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Podcast Episodes

The Juicebox Podcast is from the writer of the popular diabetes parenting blog Arden's Day and the award winning parenting memoir, 'Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad'. Hosted by Scott Benner, the show features intimate conversations of living and parenting with type I diabetes.

Filtering by Category: Loop

#313 Fox in the Loop House - part II

Scott Benner

Kenny Fox talks Loop Management

Kenny and Scott talk about DIY Loop and type 1 diabetes. part 2 of 2

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+ Click for EPISODE TRANSCRIPT


DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello, everybody, welcome to Episode 313 of the Juicebox Podcast. Today's show is part two of a two parter with Kenny Fox. Now Kenny's name might not ring in your head like, oh, Kenny Fox, is that like Michael Jordan for diabetes? Well, no. But what Kenny is, is the data of a little girl who has type one diabetes, who really dug in to the DIY loop. And he understands it in a way that I find it inspirational. Now, Kenny and I are going to walk step by step through every setting in the loop, talk about it and kind of a big picture way. If you're not into a do it yourself algorithm for insulin pumping, I get that you don't need to be I'm not telling you to be. What I am saying is listen to the episode anyway. Because it's just another way of thinking about how insulin works. This episode of The Juicebox Podcast is sponsored by Dexcom. The Contour Next One blood glucose meter, and touched by type one, you can always go to touch by type one.org Contour Next one.com or dexcom.com Ford slash juicebox. To find out more about the advertisers, there'll be a little more about them later in the show. But for now, I think we should get to it. We're going to start right at the top by saying nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please consult a physician before making any changes to your health care plan, or becoming bold with insulin. And today. Also remember that what we're talking about is an algorithm that Kenny and I downloaded from the internet. It doesn't belong to a company, you just completely do it yourself. It has not passed through the FDA. So understand that while we're talking. Now that aside, using the algorithm. And watching the data come back from it and seeing how it reacts will absolutely supercharge your understanding of how insulin is working in your body. I'm telling you to watch a an app, a computer algorithm decide about insulin, it just elevates your understanding. At least it did for me. It's taken me a while to figure looping out and I'm probably not all the way there. But I'm getting closer. And I'm going to keep having these conversations with people who are ahead of me until we're all at the same level together. Luckily, I found Kenny and Kenny understands looping. And that's why this episode is called Fox in the loop house. Part Two. So insulin model, when you have yours, even lower than mine is what's the intention of making the insulin model a shorter time period.

Kenny Fox 3:01
So whenever I try to deal with loop, I'm doing my best to represent reality. So because I know that her incident her bonuses and stuff with good bazel only last four and a half hours. That's why it's four and a half hours. It's not just to get like a performance out of it, it's because I really think that the that's how long the insulin last. The rest of the model is a little interesting. If you see that top option is always that Walsh model, it's always got the line like higher than the rest of them. That's kind of what the pumps use it. It's more like a I don't know, like a straight line steady decay of insulin or insulin is really kind of peaky, right, it's slow to start, it hits hard kind of around an hour ish hour and a half. And it stays strong for an hour or two. And then it kind of fades. And so these other models more more accurately represent like how much insulin is left, because it's kind of more initially and then less later, where that wash model stays really high. And so that's why the that's one reason, even endocrinologist know that insulin lasts longer than three or two or three hours. They like to set people at like a three hour because for most of that curve, a three hour four hour Walsh model will accurately represent how much instance on board until of course, you get to the end when you say hey, it's over after three hours, and there's still two more hours left. And so then people are like, Oh, well, why do I says no more instance on board? Why do they keep dropping? Why is my blood sugar keep dropping? Well, it's because there really is more insulin on board but your pump is lying to you. So you either got to have your pump lying to you the whole time until the very end when zero is zero, or and then you can kind of just round down or you set it shorter and then it's like kind of accurate most of the time and then at the end, you still have insulin on board left for another hour too. So it's a tricky thing.

Scott Benner 4:51
Is this a case of because insulin works in choppy like ways, not smooth ways that you're going To have to lie to yourself or lie to the pump, or have the pump lied to you, however you want to think about it one way or the other. So let's lie on the more

Kenny Fox 5:10
cautious side. Yeah, I think for a lot of NGOs, they use the instant action time of three hours to give people permission to bolus when they're high, like, hey, if it's close to zero, go ahead and correct because after three hours insulins mostly done, rather than tell people, hey, this is how long it's been last. And if you see this number, round down, a better idea would be to use a better tool. But those are limited, right? You can use nightscout has a better, like in insulin action calculator, extra spike, these other open source apps and loop their insulin models they use for how insulin hits indicators is much more accurate than what comes standard in most pumps, where it's just a matter of getting these tools.

Scott Benner 5:52
And what I would do prior to loop is, I just wouldn't pay any attention is on onboard.

Kenny Fox 5:59
Exactly. Yeah, it becomes so inaccurate that you don't trust it anymore. So no one looks at it, which is what we'll talk about, we get to base rates and stuff like that's, that's the the piece people kind of ignore they people look at it and go, Oh, wow, there's a lot of insulin on board when someone's falling, but then they don't really look at it other than that,

Scott Benner 6:15
yeah, I just think of it is, I don't know, like, it's like putting out a brush fire to me, like, I've always got to charge toes ready. But I'm not always squirting it, I turn the water on when I see the flames. And so like it just, you know, I go I put something out, I keep walking around, there's more, there's more carbs, more more insulin. Now stop again, it's just to me. Diabetes is like a common sense. Like you can use insulin in a common sense way. It's when you get out of balance or out of rhythm, that everything gets messed up. And then common sense doesn't seem to apply anymore. Which is why I always tell people like when you get when you start bouncing, the best thing to do is to get low, get down, get steady and start over. Because you're just you're trying to you're trying to grab sunlight otherwise, you know, yeah, like it's just it becomes it just becomes an endeavor. That doesn't make sense. Okay. Kenny, also, by the way, at the beginning of the podcast, we're gonna let people know, this is an algorithm that you downloaded offline. It didn't come through a company it has not by anybody except the people who wrote it, who, by the way, are really brilliant people, but are not the FDA. And that you're not a doctor by any stretch of the imagination, or am I? We have no, not even close. Right. And that none of this is advice. We're just talking through how we do it people should you know, definitely be precaution. You know, take precautions. Keep in mind that when I started the loop with my daughter, I had Jenny to talk to by text, I was able to reach out and speak to Katie, and had I not I don't think I would have made it two days. Honestly

Kenny Fox 7:54
with it. It was it's very frustrating to start to or it could be scary depending on which way you're coming from

Scott Benner 8:01
hundred percent. Okay, so what should we talk about next? Do you think basal rates?

Kenny Fox 8:05
Well, real quick on the model only thing left is that peak, you don't really see it much. But it's mostly like supposed to represent when insulin is at strongest. I use the adult one for my daughter, not the child one. So the child one has like a 65 minute insulin peaking and the adult 175 I feel like a little over an hour's when I see insulin pulling her down the best. So I went ahead and did that. You also see that if you extend the peak out and use the adult one instead of the kid one, you'll often get larger initial bolus recommendations, just because of the way the math works. So I use both a lower insulin action time and the adult peak that's a little higher. a fun thing if you want to test or kind of play with the shorter da instant action time without or peaks. without, you know, really testing it like an open loop or with your PDM or whatever is you can when you do the build. And there's a screenshot in that loop docs on how to change the insulin action time and peak, Katie had a great suggestion, just take one of the models you're not using, for example, we don't use vs. So I took the settings for Fiesta, and I changed it. So I just changed the peak to be what I wanted it to be like matching the adult one for example. And then I change the insulin action time to you know, the five hour one or the four and a half, whatever you're going to test. That way once you build your app, you can just switch between the models, and like use them for what you want to use them for. So if you want to try a five hour interaction time, and then find it's like too much, it's too aggressive or whatever it is, then you can just go into the settings and just tap and use the different model. You don't have to go back and rebuild. Sometimes building causes a lot of stress for people. So if you can do it once then you can just kind of toggle back and forth without having to do a new build. It's helpful. I guarantee you just spoke about most of the people's understanding as well. If they're getting into that Lu customisations. Yeah.

Scott Benner 10:03
Okay. sila rates is good. Yeah, rates is the next place to go. So you just said something, you know what? Maybe it's not maybe those things strategies the next place to go. So that's a cool one. Yeah. And here's why not all of you who even download loop are going to have this setting. So in very basic terms, if someone has written a program, it's an app, right? And this app is an algorithm that takes the data from the Dexcom, and sends it to your insulin pump, and makes these insulin decisions happen around it. There are other people working on additions to the idea. So there's sort of a basic one, is that called the is that always dev? Is that the one that's being constantly being developed? Or am I speaking wrong here?

Kenny Fox 10:51
Yeah, you're right. So the master one is the one that you know, is should be the most stable, it's kind of the one people would mostly download. Typically speaking, Dev is where all the is where some of the playing, there's actually like, kind of sort of a layer beyond that, like a what they call like feature testing, someone might build a little, a little change, they want to try, and they'll build that. And then once they kind of test it, it looks good. And they kind of put it into Dev, and that's where all kind of the fun stuff, the new stuff comes together, and hangs out for a while while people use it and make sure that all those new features don't just work, but they work well together. And then eventually, that gets promoted up to master after it's,

Scott Benner 11:32
everything looks good and proven out. So the very first time someone mentioned to me about an automatic bolusing. So right now, this this, this, this master branch of loop does not does not give you boluses of insulin, it manipulates your basal rates to try to try to get you to where it wants you to be. But I was somewhere a number of months ago, and some guy says to me, yo, have you seen this Auto bolusing? You know, addition to the loop? And I said no. And he told me about it and helped me check it out. And I forget if it wasn't written by a man named Ivan, maybe Ivan. Yeah. And Ivan's was cool. And you could turn it off and turn it on. But the ways to make it work were a little too detail oriented for me. So I was able to make it work pretty well. When there were carbs present in her body, it actually had a setting for like, have this work while carbs are present, or while carbs aren't present. And I couldn't make it work without carbs. And I and I could make it work with carbs. But when I tried to leave it on constantly, overnight, her blood sugar would be like, you know, 80 and all of a sudden it would like be giving her insulin. Oh my god. That's no good. So we got away from that. When an auto brand showed up. Did Pete right it? p pizza and the main steward and developer of lupia. Right. So Pete wrote this one, I gotta tell you, I've been using it for a while now. As a matter of fact, I got a note from Kenny and Kenny, he's like, yo, you seen this developer? This, uh, Audubon springs from Pete and I was like, already got it. And so yeah, you were ahead of it. I was surprised. Sometimes I sometimes I'm out the right out in the forefront. The flag I don't even have a sword. I'm just running ahead with the flag. So I'm the first guy to get shot Kenny.

Kenny Fox 13:24
Someone has to be

Scott Benner 13:25
shoot the guy with the flag first. So. So anyway, we're using that. And I have to say, it's pretty Skippy. So Am I understanding it right that when and insulin is pending, or when the you know, the loop is telling you, we think you're going to need another half of a unit soon. It will give you 40% of that.

Kenny Fox 13:48
gas. Yeah, exactly. So like the by default. So instead of increasing basal rates, it only decrease your basal rate, it will never increase. If you need more insulin, instead of ramping up your temporary basal rate, it will give you a bolus. But then just for safety, there's a a number you can actually change it to in the code, but it just uses 40% of whatever loop thinks you need. And it gives you that as a Bolus in the next five minutes. So I'll give you another 40% of that. So it kind of its slows down. So I mean, in theory, if your insulin need was the same, for let's say half an hour, because that's how long loop kind of can can give you a basal rate for it would give you it end up giving you less insulin over that half an hour because you'd never get to 100%. You know, 40% 40% 40% just gets smaller and smaller and smaller, but never really gets to zero. But it gives you a lot more up front. So Pete did some cool math was basically saying that if you had consistent insulin needs and you're going to run a single basal rate, increased basal rate for half an hour. You're basically getting 17% of what loop thinks you need every five minutes. If you just held steady for that half hour and then but With the auto bullets, you're getting 40% of it kind of right away. So you know, within the first 10 or 15 minutes, you're still way ahead in terms of like timing of the insulin, but after about 20 minutes, you're kind of about the same amount of insulin delivered. Unless you count the fact that we might change the base rate every five minutes, in which case you go back to what I mentioned before, where it starts counting over again to redeliver. So

Scott Benner 15:22
right, so using Arden's current situation, which, by the way, please believe me, no one set up just because it works perfectly during Kenny's conversation in mind right now. Like, so I want you to know, first she comes out of gym, you know, she's lost connection, Toradex calm, while she was disconnected the loop had taken her bazel away completely, so she didn't have any insulin coming in. And she gets back over finds out, hey, my blood sugar is actually you know, 60 I want you to know that we checked that with a finger stick. So she whipped out the Contour Next One meter, she checked her blood sugar, she's definitely 60 she feels fine. You know, I didn't share everything. She said in the tax. She's like, I don't feel dizzy, I feel 100% fine. She was you know, 15 or 20 minutes before that, like in the low 70s. And most of your like, the kid just went the gym class with a 70 blood sugar. But it also is because I knew that for the time prior to that she did not have a glut of even bazel running because this 85 blood sugar that was trying to drift eventually to 60 which it did over a number of hours. Loop has been taking away bazel for a while now. So I was pretty certain that even if she kind of got a little lower, it wasn't going to be a crashing low. It's just going to kind of like float down, which is exactly what happened, which is cool. But I just want to be clear we you know, I my daughter seven units of insulin based on the hope that her CGM pop back on it was right which by the way, it did pop on and it was right she it had her at 64 the the meter header at 60. You know, I'm that makes me comfortable. You might imagine the next reading drifted down to about 60 and then come back up to the meter. Yeah, we're at 60 right now. And but here's the great thing. She's now been eating for quite some time. So just like we talked about earlier with the cereal, like where you know, she looks like she's 85 or 90, but the cereals in there. Clearly, she's going up because she's eating the cereal, but the glucose monitor has not adjusted out of it yet. And we gave her some crushing amount of insulin vino for the cereal. And it still didn't help by the way Arden's coming out of that cereal, she still at one point was 171 error straight up. And the way we stopped that was by opening the loop. And hitting her with a big bolus of like three more units, she eventually had 13 units for that cereal, which, ironically, is how much I would have given her without loop. And I don't know why I didn't just do that it was because it was because I wasn't with her and nobody was around. But we stopped that cereal spike at like 185 200. And that space, it it leveled out. And as soon as it started to come back down again, we close the loop right back up. So the loop could start taking away bazel. Because those three units were too much they were enough to stop the spike. But they weren't going to be needed moving forward. And because ardens bazel rates like 2.5 an hour, I just basically I threw in an hour's worth of bazel to stop the spike, and then took away an hour's worth of bazel. And let that three units act as the bazel.

Kenny Fox 18:25
Does that mean we do something very similar. When I see a spike like that, I just don't bother to open loop because one, I can't do that from the watch. I'm not going to bother my six year old to say Come over here. Let me have your phone. And then I'll do that. But also I know exactly what you said, which is that what I'm giving ultimately is probably too much unless it's unless I miscounted the carbs. So that's one of those situations where it's like, well, if I miscounted the carbs and I'll go in and edit or add a carb entry kind of back in the past to kind of stack on top of the meal. But But even before I can even figure that out, it's just a big bullet. So you just need to stop the arrow, give it a big bolus, let Luke cut bazel I don't care if it cuts bazel or not. And if I think I miscounted the carbs then I go back and I add carbs. If I didn't miss count the carbs and just missed Pre-Bolus or whatever Miss timing, then I just let loose cut the bazel because for the same reason, she's going to go low eventually if it doesn't, so I just let it do it. That may mean you get a couple more ticks up versus open looping. But I just I let it ride. I just give a big enough Bolus to stop it in its tracks and loop cup bazel and hopefully land safer or safe safely or safer than she would have otherwise. I've done

Scott Benner 19:37
that too. I don't it's funny, isn't it like what you just said makes complete sense they but I would have been uncomfortable giving her five units to stop a one at going up. Even Yeah, even though I think you're not wrong. I think it probably would have gone the same way. So I'll try one day like I just like having the bazel back there.

Kenny Fox 19:57
Oh, it definitely helps. Yeah, it makes it makes a difference.

Scott Benner 20:00
So, so now right now at this meal, we've put in seven units for what I'm guessing is like 80 carbs. But at ardens ratio. She has more than that she needs more than that. Now I'm going to tell you right now I've seen it work enough times, going back to Pete's Auto Bolus, those things strategy to tell you that if we don't do anything else, that Auto Bolus is not going to let her go over about 170. That that's what I know is going to happen based on what because I've watched I've let the auto Bolus do its thing a number of times, so I can watch it. And so if there's a if there's a reasonable Pre-Bolus, you're starting with a lower number like this, it's going to stop her up in there, and it'll get her back down again. But the truth is, is that as soon as Arden's blood sugar adjusts, in a way that makes me comfortable that we're seeing some sort of upward mobility, you know, movement in her blood sugar, I'm going to ask her if she finished all of her food. And if she did, then she's going to put in probably three more units on her own put in the rest. Yeah, yeah, it's so it works. And I don't know, the technical side of it is lost to me. I don't know the changes that they've made in the basic Master, you know, version of this since we first started. But when we first started this, I think I've updated the master vert, you know, loop, maybe once or twice in the last nine months, the first two goes of it that I was using, were really, night and day, not nearly as good as what this is.

Kenny Fox 21:32
Yeah, yeah, it was a big, big one was how, how loop assumed that the only pod was delivering those basal rates, how it calculated when to start and stop its delivery. That was the big thing that was off a lot of the Medtronic pumps that had been used before, they instead of they just do it differently, they start, they restart the counter, but then they start a little sooner, without getting the detail to start sooner in like the Omni pod and a couple other of the Medtronic pumps so that and I think they sort of knew about it. But didn't think it was that big of a difference in the amount of insulin delivered and how much difference that would make. But with especially with littler kids like us, it made a huge difference, it would say that she'd have a larger percentage of insulin on board then than she really did, because it thought it delivered insulin and it didn't. So that that was probably the first big change. And the second big change was a the car model how loop expected the impact of carbs the hit, I thought it would be kind of steady like all those 80 carbs, we hit evenly, evenly raise the blood sugar across those two or three hours, instead of like more accurately modeling that most food hits faster sooner, and then it kind of steadily goes down. And so those were the two like significant changes that you probably experienced. And I did too, that sort of made me start to trust the system a little bit more.

Scott Benner 22:55
So let's jump to base. All right, let me ask you, for me, you heard me break Arden's Bolus into two different decision making entries? Yeah, well, actually, it's one it's so she makes an entry. So she said whatever it was, if it was 35 units, two hours, it means it says two or however much it thinks she should have, I always tell her just choose zero and enter it, then get that Yeah, put in the next one that it bundles them all together for the next one, so that you don't have to watch insulin, so that it doesn't deliver the first few units of insulin for the two hour model. And then you have to sit and wait for the to do that. So instead you deliver nothing on the two hour or whatever the first time because you're thinking and the adult delivered on the second go round. But I do that, so that Luke has a better understanding of exactly what you just said, some of these carbs are going to hit faster, some of them are going to stay with her longer. And that used to keep the bazel from going away. And it still would if I didn't have the dosing strategy of auto Bolus on. Because I have auto Bolus on it's now taken her Basal away, but it's going to try to come back with Bolus if it needs it. Whereas if we didn't have auto Bolus on that thing I just did with a two hour and three hour would have tricked the loop into keeping the bazel on.

Kenny Fox 24:15
Yeah, so like that three hour people find what those carbs is that if you put a longer absorption time, the initial impact is less you get less insulin recommended up front, typically you'll get the most insulin recommended up front on a two hour. But on a three hour let's say it's going to last longer, and it's going to the carbs have a chance of outlasting sort of the peak Enos of the insulin and Luke knows that so that it will offer more insulin later to kind of help compensate for that. So sometimes when people find themselves kind of high at the end of a meal, it may not be because there wasn't enough insulin it may just be that you needed more insulin but you needed a little bit later and you seem to totally pay This food actually is lasting longer than I thought. And it will often recommend another Bolus once you modify that absorption time. In the past like, Oh, this one, I thought it was two hours, it's probably more like three, you change it, it'll probably give you a bolus recommendation in most cases. So but doing the like, representing the food properly is isn't is important. And it's kind of a new thing I had to learn with lupus like, I don't know, how long does something take to eat night last in your system? So

Scott Benner 25:26
no, I know. It's interesting. I just, I kind of blank I do two and three hours. And it works every once in a while. If it's something like rice, like with a Chinese food, I might do two, I might do two and four hours. But it's you know, it's not always perfect. Again, I want everyone to keep in mind that Arden's a one c does not come from an 85 line that never moves. Like to be perfectly honest, like, because she was sleeping in. And you know, it all, you know, it all went well for me this weekend. But that's not normally what her it's not normally. Yeah,

Kenny Fox 25:58
it looks like for eight hours, you know, and I think that's part of the secret sauce or magic sauce of like a control IQ or some of these other algorithms is they you just enter carbs. And you don't talk about absorption time even like open APS and other systems, they have other algorithms, they tend to handle the dynamic carb things looks like a little bit better. You don't have to worry about how long the food is necessarily. I think that's that's pretty magical. But loop is, lets you kind of see all the pieces like it helps you understand, like, biologically what's happening.

Scott Benner 26:28
I think that that's really why I'm telling people about I always talk about glycemic index and glycemic load with people like you really need to understand the impact of the food. You know, it's how, how hard is it hitting? How long is it hitting? How long could it go? You know what I mean? Like, is this a? Is this a food that can only make it two rounds? Or is it going to go the full? You know, is it gonna go the full way? Is it gonna crush you? Is it gonna come out like Conor McGregor? And just like jump through the air and, you know, jam its face into yours? Or is it gonna go a little slower and you know, start more of a seductive dance with you before it starts the pummel you.

Kenny Fox 27:02
Yeah, like juice or candy or glucose tabs like I enter those 30 minute absorptions. I mean, they're probably more like an hour, but I do it as 30. So that loop doesn't try to overcorrect those. But I mean, generally speaking, like juices, kind of a hit quick and go away fast. You don't want to put a play introduces a two hour and she's just having it just for fun. Or having grapes by themselves. And that's it. Yeah, they don't last two plus hours and loop will end up making her golo kind of later that when you know because it just thinks the carbs are gonna last longer, and they don't.

Scott Benner 27:34
So let's talk about the basal rates then. And I guess we have to talk about them in two different ways. Like, do if you're using an auto Bolus pizza? And if you're not, so if all right, I don't know, though, it's funny. I have no

Kenny Fox 27:46
basal rates to just bazel Yes,

Scott Benner 27:48
I haven't changed ardens bazel rates, since we went to the auto mode, the only thing to understand is that is is how it makes up for stuff, it doesn't make up for bazel anymore, with anymore.

Kenny Fox 28:00
So I think this is where this is where I think this is where I start with most people that I end up helping out is uh, basically you know, is like switch your body needs some and you and Jenny have talked about that multiple times. So it's like if you didn't eat, or run around or whatever, and just kind of fasted all day and watch TV or something, you should be able to stay flat. Same with overnight. And so that's kind of the goal with Basal. And so but what I've found out get into like how you track it here in a second. But what I found is most people have like one bazel rate, maybe a couple but if you start with one, you end up able to see when those other changes show up. And I came to this just because on shots, Tessa was level that the basal rate and the insulin on board calculation worked all day, every day at any time. Day or night, it would always end up zero ended up being zero when she had no insulin on board. It was everything was done. So I just came from the mindset that she only had one basal rate, but I got the pump and start playing with it. And it just would mess up the math for tracking how long the insulin was working. So I just kind of stuck with one. But I found that with other people, it works pretty well to you just pick one. And then you can kind of see if you need another one. But you start with one I guess I just heard the other day that the sugar surfing guy, Dr. Ponder, I think sort of thinks the same thing. And what I think actually changes throughout the day, which we'll get to in a minute is sensitivity not bazel but when in a world of dumb pumps, all you have for automation is basal rate changes. So I think people are in one sense programmed to think oh, it's probably bazel but really what I think doctors and people are compensating for with base rates is often sensitivity changes not bazel but yeah, so Basal is is what is supposed to be but loop sees Basal as neutral as free insulin as zero doesn't track it. It trust that you said hey, I need this much insulin. Kind of as a baseline for my body. And so it doesn't really keep track of that. So if you have bazel too high, you may end up with the insulin on board number may show that you have zero or maybe even a negative number. And really, you're falling you actually have more insulin in your body than loop is aware of. But because I trusted you, I said, Hey, you said you need to this much insulin all day. So like, that's, that's what I'm giving you. So when you do an override, and you increase those bezels, it also can kind of complicate that calculation. So yeah, I think that's kind of the main thing is, is Basal is free, so you don't really track it. So what I do to test bazel, with closely if I find the search with like the tandem system as well, is you can test bazel without testing bazel in a closed loop. And it's pretty awesome, because you can look at that insulin board calculation, you know, assuming that interaction time is reasonable, anything six is a fine place to start six hours. But if you look at the insulin on board, overnight, you should get to kind of where you want to be in that correction range we talked about, and iob needs to be pretty close to zero and flat. If I obese, not zero, meaning like just bazel is all you have running at night, and you should be flat. If it's not zero, then something's wrong with your bazel. If you're constantly have positive insulin on board, like a bigger number more than zero, then your basal is probably too light, because it loop is constantly having to add more insulin to kind of push you down into your range. And if you're especially if you're above the range, you want to be insulin on board, that's a positive number, especially at night should always mean you should be falling. But if you're not, then something's not Luke doesn't know what it should know. And then the weird one that really throws people off is the negative insulin on board when you see a negative number in there.

Negative is is a deficiency of insulin, you and Jenny have talked about that a little bit before where if you turn your let's say your level when you wake up at 80, but someone wants to be at 100. When they Bolus they could turn their pump off, they could do a zero beta rate for a little while and you'll drift up. That just means your body has less insulin than it really needs just to hold you level. And that's on purpose. So negative insulin isn't a bad thing. But when you see negative insulin on board, you should always see you know, giving some room for sensor lag, you should see either right away or pretty close. Blood Sugar readings should start going up when you see a negative insulin onboard situation. If it's not going up when it's negative, then you're not representing the insulin properly in the body and loops gonna loop thinks you need more insulin you don't. So what happens oftentimes is people are falling, the blood sugar is falling and there's negative insulin on board means their bases are too strong. So as soon as you start curving up, let's say you treat a low loops like oh, yeah, I expected you to come up not knowing that you actually gave carbs. And so it's going to try and fill in that negative because what should work in this situation I talked about where you turn your pump off before breakfast, you actually can't just turn your basal back on, otherwise, you'll still keep drifting up because your body is missing the insulin, it needs to kind of maintain that balance. So loop tracks that negative amount how much you're missing. And it's going to fill it in for you to try to level you out. And then also correct for any, you know, upward momentum. So what ends up happening is you know, getting slammed back down, because you have too high of a bazel you have negative insulin on board and you're falling, and then you correct but don't tell loop about it. And then it's Oh, good, you're coming back out. Let me give you more to level you out and it's pushing you back down again. So you end up in this cycle overnight, we're constantly trying to bring someone up and lips pushing them back down because he thinks you're missing insulin, but you're really not. And that's what that negative insulin on board will tell you. And so you have to adjust your bazel. So that insulin on board is 00 means level, negative means up and positive means down, obviously, without food. And that will tell you so you can kind of scan your day and look for points in time where loops thinks you're kind of around zero and see what the behavior is of your blood sugar. And then you can know if your basal is too high or too low, and starting with a single basal rate will help with that because the insulin runs for four or five, six hours. So feel really high basal rate to catch a nighttime rise like most kids do. And then you cut it back later the insulin that you gave is still running you know until four or five in the morning and it's you're still gonna end up with this like negative iob and falling kind of situation. And it's not the not because your your little basal rates during those eight hours are are too heavy. It's because the heavier when you ran from like 10 to midnight, was probably a little bit too strong and it's just causing an impact later on the night. That was a lot but hopefully that makes sense.

Scott Benner 34:48
No, it doesn't. And I think it's important for people to understand the idea of like sensor like the CGM is reporting behind time a little bit.

Kenny Fox 34:55
A little Yeah.

Scott Benner 34:56
So by way of an example because you spoke there for A few minutes when you began speaking, Arden's Dexcom was telling me her blood sugar was 58. But it's not because she's had food in her for 35 minutes. Right. And so I'm not panicking. It's, even if it's, it's not 58. But let me jump to the end of the story, but it was stable at you know what I mean? So I know this food is now going to do what I expected to do, right? Like trust what you know is going to happen, it's going to happen as food went indoor, it's going to start impacting her as you were speaking, the Dexcom flipped over to 66. So obviously, her blood sugar didn't magically go from 58 to 66. In five minutes, it has been trending up. Like you said, it's now gotten two reports in a row to its to the text comms algorithms now gotten two reports in a row that it believes. So now it's going to start reporting it right. Exactly. Yeah. And so as soon as that happened, it took a little bit of more time for nightscout to know it. So I can kind of see it on a on a different screen, someone watching everything while we're talking for this explanation. As soon as nightscout knew her blood sugar was 66. It put her bazel right back on again. Like immediately, and now I shouldn't be right. And now in truth, this is the moment we should be bolusing that other insulin right now, whatever more insulin I believe she needs for her food. This is the time to put it in probably sooner even. But now for I can be certain with the data. I have backed it. Now's the time. But we're gonna let it go for a little bit just to see the loop does to let let it see what loop does. Now if she jumps from 66 to 90 next time or something like that. I'm bolusing right away. Oh, yeah, maybe even a little bit extra, right. But if she just drifts a little bit here, I'm going to be interested to see because the auto bolus is going to kick in because we only use seven units for something we told her that we told the loop and the loop believes needs 10 units. What's your suspend set up? 6060

Kenny Fox 36:55
Okay, yeah, so it will it could even start giving. That's why it turned the bazel back on. Okay.

Scott Benner 36:59
Right. Yeah, I used to have it at 55. But I she was getting low too much when it was 55. Where's yours? 70.

Kenny Fox 37:05
Okay, yeah, 70. Because again, bazel and curvaceous are locked into the base of the big one. And you got to make sure you you believe that loop will drop you the other big one will be sensitivity we get to but yeah, if you're, if you're not getting down where you want it to be like a lot of people will drop their suspend lower. And I think 60 or 65 is, is fine for the most part. But I find if I'm trying to push that kind of ad overnight, and lose my overcorrect a little and then I get woken up at my 70 alarm. So I just put the suspend a little higher so that mostly so I don't get woken up as often.

Scott Benner 37:38
I believe that I listen, I believe in our basal rates really well, like Arden got up this morning. 630 she didn't eat anything until, you know, just now. Right? And so and you know, she got down to 60 with Jim. So I believe in our basal rates. Perfect. Yeah. And overnight. She's, it's gorgeous overnight.

Kenny Fox 37:59
So I think what's nice about loop and that neutrally makes us all nicer people and talking about having tools is you have an insulin board calculator, right there. So you can see in nightscout, especially, but you can see on your phone too. It's called active insulin in the loop app, as you can objectively measure your basal rates, which is nice. It's not dislike, well, I think it's fine. It's you can at any point in the day, if you see zero and she's not level, then you can kind of question without the bezels right. And I think the other fun thing that comes into play is that idea of school for a lot of kids maybe makes them go up oftentimes, like stress or something maybe work for some people. Once you I'd like to try to tell people get your basal rate, like create a baseline where like to say, like weekends and not school will not work. So you know what normal life is so that you don't have to worry about crushing someone you know, on a weekday, if you can avoid it. And then you play with overrides the override feature increases your basal rate or decreases it however you set it. And use overrides for school and work that way. You can if you feel like maybe you're not as stressed at school or at work one day, and you'll end up meeting it you can just simply cancel the override and kind of go about your day and be fine. But if you need it, then it's there to use it and you don't have to keep fiddling with your settings every Sunday night or Friday night. Things like that.

Scott Benner 39:19
Okay, let's jump ahead here. So to insulin sensitivity now, yeah, it's funny. insulin sensitivity is wildly different for so many, you know, for everybody. Right? Ardennes during the day is 59. And overnight, it's more like 64. But I've spoken to people who have their sensitivity, like you know, it's 120 and so can you. I'll tell you how I think of insulin sensitivity and then please you tell me how you think of it and you know, etc. in my mind's eye, it's just sort of the amount of insulin it takes to impact me. You know, mean like just like this, what what's gonna knock me over? Like, you know, you can give me 59 and 59 will do what it's supposed to do. But if it was at 6565, wouldn't do it 65 would be like getting shoved by a six year old. But 50 nines, you know, like me pushing against somebody who's my, my weight, like, it's, it's the, and I know this is it's not it's not clear, because I'm never clear on insulin sensitivity, like, you know, I'm sure there's a really technical way to say it, I'm sure you're gonna say it in a second. But I find a lot of people get confused by it, and no more so than the idea that a lower number is more powerful.

Kenny Fox 40:39
So yeah, that's weird,

Scott Benner 40:41
right? So a lower No, it's a very basic mathematical idea. But still a lower number is more powerful. So my daughter, five 737 pounds, insulin sensitivity 59, during the day, your daughter, you know, much less. You know, wait, I would imagine

Kenny Fox 40:58
what's hers that? So she's her sensitivity during the day is about 200. And I would probably say realistically, it's probably about 225 250. So it's probably more sensitive. But I've looped dialed it down just a hair, because to make it behave a little more the way I'd like I use that as kind of a, an aggressiveness number to some degree to make loopback a little bit faster than maybe it would normally without causing so much of a low. Yeah, so sensitivity is yes, how much insulin it takes to move you a certain amount of points, your your blood sugars or how much insulin it takes to move you. So yeah, I think it's, it's, that's a good way to look at it.

Scott Benner 41:40
So how so I guess the next question is, and I want to talk about overrides more specifically, but the next question is this. Once I found we had Arden's settings close in loop, then I began to adjust them sort of like an equalizer on a 1991 rack system. Okay. Like I'm like, I don't know what treble point oh, nine is, but what happens if I push it up a little bit? Yeah. Right. Or what happens if I push this down a little bit like that? I, once I was close, then I could start fine tuning without knowledge, then I could start going correction range. Let me try 87 to 85, whoo, that was better. You know, you know, bazeley I wonder what 2.3 does versus 2.2. That kind of stuff. But starting out. You cannot adjust loop to ear? Did you know what I mean? Like it's just you have to start somewhere near? Near good. Somewhere near good. Right. And so my question is, do you know if I came to you today, and I was just like, guy on the street and I say, Kenny, hey, I really want this to work for my daughter. Do you know how to help somebody set this up? Like do you know how to go from scratch? Quick kidding. Add today, the dexcom g six continuous glucose monitor. You want to check it out. It's at dexcom.com forward slash juicebox. type that into your browser right now. If you're you know not good at typing, click on the link in your show notes. It's right there in your podcast player. There's notes in your podcast player, just find them and click last thing you could do is go to Juicebox podcast.com and click from there. All of these options are viable ways to get to the sponsors. While you're there, check out the Contour Next One blood glucose meter, go to Contour Next one.com there's a little button at the top, you can find out if you're eligible for an absolutely free meter. This meter is by far the most accurate one that my daughter has ever used in her entire time with Type One Diabetes. Lastly, if you'd like to see some lovely people doing wonderful things for people living with Type One Diabetes, check out touched by type one.org I'm doing you a favor. I'm shortening up all the ads today. You can do me a favor and click on the links dexcom.com forward slash juicebox Contour Next one.com touched by type one.org that's all I'm asking today. No big sell. Just go check them out. Look I'm done before the music it's like you owe me almost tears there's so much time left it's kind of weird, right? touched by type one.org helps people living with Type One Diabetes amazing organization. Contour Next One best blood glucose meter I've ever seen. Dexcom g six continuous glucose monitor game changing technology for Type One Diabetes there. I said I was going to tell you more about it. Weird. Do you know how to help somebody set this up? Like do you know how to go? Yeah Rach

Kenny Fox 44:44
for Yeah, so it took a while a sensitivity was a weird one to wrap my head around to so the my process is look at basal rate, subtract iob. I go back to someone's graph if they've been running it for a little while. Helps I find closed loop is helpful, more helpful than an open Id be a little harder to see it on normal graph, but you could still probably get close. But I like to find how the neg makes sure that negative means up and positive means down and that they're kind of at their range, where they're supposed to be especially overnight. And then we just try to find what I call like that one magic bazel rate. And we pick one that works mostly overnight is easiest way to observe it, run that one all day. And then make adjustments from there we carb ratios and sensitivity sensitivity. I mean, it's so hard to like, really, I'm not going to stop my six year old and doing a sensitivity test that's even longer than a bazel test. So I once we get overnight solid iob, zero means flat, everything's dialed in, I just tell people, hey, turn your sensitivity more aggressive to a stronger a lower number, until you start to see that line that's fairly flat for you start to wiggle start to go up and down and go above your the range you set. And below that range, you set it to make sure it also goes below but doesn't go below, then it's um, you might still not have a strong enough bazel. But basically turn the sensitivity too strong to where you can see that it's obviously too strong and then kind of back it off a little bit. And that's kind of what I use for daytime ISF because I find that people are more sensitive during the day than they are at night. So you find what works overnight, make it too strong and back it off a notch. And the reason why people are more sensitive during the day I think is because growth hormones exists kind of overnight for everybody, me included, were growth hormones, I was reading some studies on this trying to figure out why this rise at night happens for my daughter that just kills me. So what I said earlier is that no matter how much I bolus her during those rises is IRB of zero was still zero. So the interaction time worked well. That seemed to indicate to me that she actually only had one bazel rate or not, it's crazy, intense rise period. So what I found is growth hormones don't make you go up necessarily, but they do make you more resistant sensitivity. But that means something else must also be pushing you up, which I've kind of found a correlation between how close dinner is to sleep or how heavy dinner is to sleep. And so it's probably just this weird digestion process you have when you're sleeping, that stretches out how long the carbs last, and the carbs kind of have a more of an impact because all these growth hormones released during your REM sleep cycles during the early hours of sleep. And so you have more growth hormone in your system at the beginning. So there's just more resistance there. So the only way to really model that and loop is to make the sensitivity, lower a lower number in those first hours of sleep. And then I sort of like ladder it softer and softer or a higher number as the night goes on to sort of mimic the idea that there'll be less growth hormone in the body. And so I might start with like a 200 during the day, and go all the way down to like an 80, which is less than half of what her sensitivity is, you know what, like nine or 10 o'clock when I know she's gonna be asleep, and then ratchet it back up. So you know, 115 131 6180 and then when she wakes up, it's I usually have around 200 or so. So and I found that to be helpful and to help Luke kind of semi automate and for some people automate those nighttime rises, but it's really not a bazel change as much as we're programmed to think, Oh, that's a rise, I need to get more bazel if you use increase bazel there instead of sensitivity, you may find that negative iob and falling kind of at three or four or 5am instead of just making a loop more aggressive because that sensitivity is really only comes into play when you're out of range. Do you that's kind of the cool part about sensitivity is if you're in your range at you know nine o'clock at night, and she's asleep, and great loop doesn't do anything. So if I made the ISF too strong, it's not a big deal. She's in range. But as soon as she's out of range and loop kicks in, you know, puts the pedal to the metal a little bit more. It could be an x faster.

Scott Benner 49:05
Yeah, it could it could be but oftentimes it's not there in those first hours. So it's, it's, as you mentioned, like how much insulin has taken knock you over. So it's but I think it varies throughout the night more than the day. But that's kind of how I approach sensitivity. It's interesting that just because your child is younger and growing, you're having the exact opposite experience night today than we are. Get like Yeah, a little bit. Yeah, when Arden's asleep, she just doesn't need. She needs less sensitivity, not by a lot, by the way, like listen to what you're doing, you're going from like, you know, in the hundreds to double digits and you're bounced around, we're really only moving between, like, you know, 59 and 65. Like it's not it's a pretty

Kenny Fox 49:48
tight tolerance. But how many basal rates Do you have during the day?

Scott Benner 49:51
Just one,

Kenny Fox 49:52
just one. Okay. Yeah, yeah, one during the day one at night. Yeah, I've seen that. If someone's not really going through a growth period I've seen unit with me too. So I wore a sensor for a few weeks. And I sort of like helped prove this theory out by, you know, all for the case of science, having a lot of ice cream before I went to bed, and I could see my blood sugar rise and sort of stay up and kind of in waves like kind of matching my sleep cycles, kind of stay up a little bit longer and take longer to come back down then if I didn't eat something right before I went to sleep, so I was able to sort of mimic the same process as my daughter, but unless eXtreme Scale one because I'm not type one and two. I'm not growing like you said the volume of growth hormone in my body is probably much less than someone who's actually growing. So the sensitivity will be different.

Scott Benner 50:39
We're growing just not in the same way.

Kenny Fox 50:40
So yeah, exactly. When you're having ice cream at you know, eating like a whole bunch of ice cream at 10 o'clock at night. That's Yeah, we're definitely growing that stuff not to be questioned, I guess

Scott Benner 50:49
I am pretty certain that I'll be wearing a Dexcom Pro in a little while.

Kenny Fox 50:55
So that I well, then you should for science, eat something really yummy before bed and see how that happens. I will be

Scott Benner 51:00
Yeah, I'm gonna be wearing the same thing. Like I just I was talking to Rick Doubleday the other day. And I said to him, when we got done, I was like, I'd love to wear a sensor for a while if I could, you know, to really understand, you know, better what I'm looking at. And

Kenny Fox 51:14
so I think Neil is fun is did this and you should eat something similar to what Arden does when she eats it. And you'll see the absorption time play out in both of you. Yeah, it'll look a little different. But you'll see the food stop at kind of the same time.

Scott Benner 51:28
That's exactly the stuff I'm excited to look at.

Kenny Fox 51:31
It's amazing. Yeah, we ate uh, you know, again, for science ate a breakfast sandwich from McDonald's. And it lasted a long time on those chicken ones. And, yeah, you could see kind of the initial carbs. And you can kind of see the sustained fat and protein in both of us. And actually, in one of those cases where we tried it, her blood sugar ended up way better than mine, on average, so. But it's fun. I do think

Scott Benner 51:53
there's many times where I'm doing a better job for art, and then my body's doing for me. Yeah, so interesting enough for art. And by the way, is her sensor went to 75. And then the next adjustment was only to 79. But it did just Bolus 1.15 units a little while ago, then the 79 jumped to 94, diagonal up

Kenny Fox 52:18
high. So you're above suspend, and it's like, Hey, I know you need more for the carb ratio. So it gave it to you. And it popped

Scott Benner 52:23
on like, so I'm gonna see if I can raise her with a text. If I can, I'm not gonna bother. But if she answers this text,

Kenny Fox 52:31
I mean, just take the recommended bullet, because all you're gonna ask her to do

Scott Benner 52:34
it, ask her if there's any insulin that's being recommended right now.

Kenny Fox 52:37
And you can actually you can try it hover over the loot pill with your mouse. And you can see at the very end of that little hover box that pops up, it'll tell you if there's a recommended bolus.

Scott Benner 52:48
Well, so the little loop thing I have right now says, See, I don't even understand this, the loop has put your

Kenny Fox 52:56
mouse over that box and you should see another box pop up.

Scott Benner 52:59
I only have it on my phone,

Kenny Fox 53:00
I do with my Okay, then tap this tap on the loop pill and you shouldn't need so you can refresh that page if it doesn't pop up right away. But p tap on the thing that has the loop put the number in the squiggly line, you shouldn't get a little hover box to pop up.

I don't know I said you need somebody to refresh it.

Scott Benner 53:18
It's my fingers too fat.

Kenny Fox 53:20
That can happen to a lot of pills. They're crammed together. little boxes just says loop device loop. You should see something like on the hover it'll tell you how long ago the Temp Basal that it's currently running insulin on board carbs on board. Predicted minimum and maximum.

Scott Benner 53:36
Let me go over to my iPad. Let me see if I can make that work. Yeah. Yes.

Kenny Fox 53:51
So bring it up on your computer and you can look at it and it's easier

Scott Benner 53:54
to figure out how to do that. I got I don't Yeah, I don't even remember how to bring it up on my

Kenny Fox 53:58
computer. I'm remember her sight. Are you kidding me?

Scott Benner 54:01
Wait, isn't it at the play here it is.

Kenny Fox 54:03
Roku app.com

Scott Benner 54:14
typing, which is always the best thing to do on a podcast. Yeah, people love it. And really, they're huge fans. Oh, here she is. She said what? Okay, so I'm going to ask her is the loop recommending any 1.8 do it. There you go. There we go.

Kenny Fox 54:48
Now it takes all of it instead of auto Bolus would just give 40% of that right. And then again,

Scott Benner 54:53
which it would likely do again the next time the CGM turned over correct. Yep. So Yeah, there you go. So when, listen, I you know, we're not going to be recording when this is all said and done. I'll remember what happened. I'll tuck in at the end. But look at what happened like Arden's a Urban's blood sugar has been right around at all morning five or six hours that she has been awake. She went to lunch, or she went to the gym, her blood sugar went to 60 she just ate a bagel grapes, puzzles, a chocolate chip cookie, popcorn. And a What did I say? tangerine? Something like

Unknown Speaker 55:32
that. Clementine. Yeah, time. Right.

Scott Benner 55:34
And she ate that stuff. It's 1255. Right now here. And that conversation began. Back here.

Unknown Speaker 55:46
Noon.

Scott Benner 55:48
Yeah, two minutes after 12. So it's, it's, it's, it's almost an hour later. And we have gracefully gone from 60 to 95. And even if she makes it to 150, which I don't think she's going to normally she wouldn't be coming out of a low, we would have Pre-Bolus sooner, and this wouldn't be happening like this even. But this is astonishing for the situation. You know, but if you don't understand how this thing works, none of that's gonna matter. Like it? Yeah, for sure. It's damn near impossible. And so, but I also think that for those of you who aren't considering any kind of closed loop system, whether it be loop or tandem or horizon, when on the PI puts it out, or you know, whatever else. Understanding what Kenny and I are talking about here today will help you make better informed decisions even without a an algorithm, I think, because just watching and you heard Kenny allude to it earlier, just staring for a little bit and watching what happens is such a teaching thing. And when I watch Lupe, take bazel away, give bazel back make a small bump with now with the the automatic bolus or before the automatic bolus when it would kind of ratchet up the bazel. It was fascinating to watch loop take bazel from like 2.5 and make it seven but only for like eight minutes and then bring it back again. And like I was like, Oh my gosh, this is really I'm learning a lot from watching that, you know,

Kenny Fox 57:11
yeah. And like I said, we had slightly better numbers in terms of standard deviation and a one C and time and range. When we were on shots, because of the same principles that once I figured out how to apply it to loop. Yeah, it'll just make your life easier. Being able to track insulin on board is really kind of magical in terms of figuring out your basal rate and just knowing when, when the drop stops, you just got to know and how much to correct for and, and all that it's just it's really empowering or most people are just kind of, again, being dynamic about how you talk about in with juicebox. But like at the same time, if you kind of know when it's going to stop, you can be aggressive and be more aggressive because you know how much insulin is working? And if you overdid it, you know how much to correct for a lot more precision in that approach.

Scott Benner 57:56
I think that loop is going to represent, you know, I shouldn't even say look, I think that algorithms in general, but for everybody, but for us specifically, I think it's going to represent a mid fives a one C. Just base I think so what I've seen and what I know.

Kenny Fox 58:13
Yeah, as I tell people like if they're in the sevens now like if you can just get the settings right and moderately Pre-Bolus then, and don't learn not to overcorrect, you'll get sixes pretty easily it shouldn't be that that complicated. And that's what I'm seeing with some of these people, once we figure out especially like, people that have their kids and they get really stressed at school and just need a lot more insulin these overrides work super well for that. And then, and then they ended up having, you know, like I Oh, there's one person I'm working with now that was in kind of a seven range and is now looking trending toward kind of a 6.2. You know, and and they just have even before that before their stats changed just by making some of the changes I talked about. They just have more, it's more predictable. And now it's not as crazy, you know, at least when they're high kind of know why it happened. So. So that's pretty great.

Scott Benner 58:59
It's amazing. Last thing I want to bother you about is overrides. And I don't know that I think about them correctly. So let me just tell you how I think about them. And you correct me if I'm wrong? Sure. I, I know I don't understand exactly what they do. But when I said an override for art and whether it's a decrease like you know, instead of it 100% of, you know settings, I go to 80% of settings or 50%. That's a decrease in insulin power. Or vice versa. If you go to 120 It's a 20% increase, like that kind of thing. Is it just an across the board increase? Is it literally like the correction range stays the same? The suspend threshold stays the same. But this is an increase of bazel rate. insulin sensitivity is the heart rate show carbery show is that in

Kenny Fox 59:49
Yeah, yeah. And the kind of the tricky thing about using them is that once you turn one on any like entries like carbon trees in that time have that Change applied to them. So if you used too strong of one, and entered carbs or a low one, some people get a little too extreme and they go, Oh, they're falling. So I turn an override on, which is not the time each and an override on but they'll do like a 20% or something really small and then enter like lunch. Well, then it thinks that lunch needs 20% of the insulin, your carb ratio, like 80%, less than what you'd need. And so there's no way to really go back and fix that. So you, you'd have to basically know that that happened and add 80% more carbs to that carb entry to get something equivalent. That's a tricky part. But yeah, an override changes everything, which is good and bad. I think there's a lot of cases where you only want to change one or two things, but because bazel and insulin on board, that bazel calculation is so important. I try to tell people that the override is should only be used in cases when bazel actually changed. Otherwise, you end up throwing off the math if you use like if you're stuck high and you're frustrated, and you use a 200% override 100% more than normal, you're doubling everything. Later on, you're probably gonna end up loops gonna think you're gonna land and you're not because you actually have more insulin in your body than you told it because all of a sudden, you told that your basal rate doubled. Yeah. And so yeah, you end up with a problem where lube would have landed you if the math had been right, but you won't, because you lied to it for a little while. So

Scott Benner 1:01:24
the only time the only time I really use it is sleeping it. So like I said, Arden's like 1.4 overnight cheese 2.5 during the day, that 2.5 kicks in at 7am. So usually she's drifting, I have Arden pretty consistently drifting to 70, when she wakes up in the morning for school at seven. So if I set an override at 6am, I set it about 50. So about 50% of power, this, that's enough to get in front of the drift, so she doesn't drift to 70. And so that when 7am comes, and the insulin sensitivity goes from 64 to 59. And more importantly, I think in that situation, that bazel bazel jump up, it keeps the bazel back at overnight,

Kenny Fox 1:02:06
and yeah, 50 percents about what your nighttime is compared to your daytime, right.

Scott Benner 1:02:09
And that's and that's how I do it. Now, the longer she sleeps, the less she needs. So if she's just going to sleep till nine o'clock that works, but if at nine o'clock, she's still sleeping, it maybe has to go to 40 or 30. Like you really, because at that point really consider what's happening. She has not had food, and she's not having any like body impacts on her blood sugar. Now for sometimes eight 910 a dozen hours like in a really sleeping in situation. You keep taking it away and taking away. The key is that when you wake up, it's got to go right back on. And when you Bolus, like you said before, it's not just for the carbs. It's not it's and it's not unique to Pre-Bolus still, you're not just Pre-Bolus for the carbs. You are you're also have to replace all that deficit that comes behind because basically, it's a paper tiger at that point, right? Yeah. Like any food you take in is just going to overwhelm you because there's just no insulin happening in your body. That was just enough insulin to basically keep, you know, like, like a, you know, a corpse from blood sugar going low. It's just not a living person. Right then nothing's happening inside of her in this scenario.

Kenny Fox 1:03:18
Is Arden have a drop in the morning before she wakes up? And then like a rise after she wakes up? Typically? No, not at all.

Scott Benner 1:03:25
Okay, that's good. You see that sometimes my settings take care of all of that. Okay, yeah, um, it used to be before loop. She'd wake up in the morning at seven. When her Basal went up with Bolus in the morning with Bolus, the rise.

Kenny Fox 1:03:40
Like she does have that rise. Yeah, she

Scott Benner 1:03:42
has it but we don't see it any longer. It doesn't actually happen. Because we're basically constantly like I said, you know, we've been talking for a while, like I said a long time ago, because I'm thinking about now as before, not now for later. And yeah. So I'm, I'm a head of that I Pre-Bolus. spikes I Pre-Bolus rises, if you've heard me talk about, you know, like, extended bonuses. People talk about extended Bolus is one way the way I talk about them is Pre-Bolus in the food, and then Pre-Bolus thing, the spike. Yeah, exactly. Yeah, just always. It's a time travel movie, you know, what's going to happen in the future. You're just you're just always bettan you know, on the right team to win because you've got the almanac, and you know, who's gonna win? So

Kenny Fox 1:04:25
yeah, so when I use overrides, it's really like bazel changes. So what what's kind of fun with overrides if you have your basals dialed in, like I said, using the IP math, and typically people have the same bazel overnight as during the day but not always. If it's good, then what should happen with overrides and a lot of people don't experience when their settings especially bazel is not right. Is this doesn't work but if you can look overnight, and my daughter typically runs around 80 to 90 overnight, and if for some reason she's not if she's hovering around 100 or Hundred and 15 with some positive insulin on board, that means that her, her insulin needs have shifted maybe just for the day maybe because she's sick, I don't know. And I'll just run an override of about 1020 30% increase. So 120 or something like that. And then I'll run it. And, and I'll leave it on for breakfast and breakfast is sort of like the maker break like was this for reals or is just temporary. And if she doesn't go low from an increased override at breakfast, then I run that override all day long until I see her until I see that negative iob and blood sugar falling sort of situation again, where things sort of settled back at over. So I just roll over out of bed, look at nightscout see where she was at. If I get woken up with a 120 or 130 alarm overnight, and Luke can't keep her under that number, then I know her insulin needs have gone up a significant amount like she's probably sick. So she probably needs like a 130 or 140 or more to and then I just run that all day long. Again, checking it with breakfast. And and that's how we kind of get mostly normal days like I get ahead of it, I see the increase happen overnight, that shift sort of happens in that two to 4am timeframe, most of the time. And I just put an override on the compensate because her basal needs went up, but I don't think it's going to stick around for the next few weeks. And it usually lasts a day or two, sometimes a week if she's actually sick. But I always use that overnight as a measure to say how much more or less does she need. And use an override and I don't really mess with my base settings often because they usually work occasionally, if you get up to like 150% override, because she's sick. Sometimes the carb ratio has to be weakened a little bit because doesn't scale up quite perfectly. But I'd say 9090 plus percent of the time, it's just a 1020 30% override for the day, and then the day looks normal again. And then I watched the numbers overnight and wait for it to shift again. And then I cancel it and then we go back to normal settings. And it's it's really kind of magical to be able to see the patterns. Once you get some consistency. You can see those patterns coming and get ahead of them. Yeah,

Scott Benner 1:07:03
well, listen, I can't tell you how thrilled I am that you found the podcast and and reached out to me because I think that I listened, I edit these shows, obviously. And then I listened to them for sound. So I end up hearing them two or three times. But I'm gonna listen to this one dozen times, because this was a terrific conversation. I just I can't thank you enough. And can I can I ask you, right here, start thinking about how we could take a person who knows nothing about any of this? How do you explain this to them? Like that's the thing. That's next, right? Because you and I are involved. You know, and everyone listening, you know, is involved with their kids, hopefully, but everyone wants to not be and they don't want to burden their children with teaching them all of this like is, is an algorithm based insulin pump ever going to be? You know, I guess skinned in an app where you don't need to understand what's happening behind the pretty picture on the front. Like I hope so.

Kenny Fox 1:08:03
I think the hard part right now is the settings have to be like that's why I think control IQ seems to be working so well compared to like a Medtronic where it's trying to figure out your settings. But then control IQ just trust your settings. So you have to if you can get it close, then you'll get good results. Just like loop if you can get it close, you'll get safe and good results. But I think the real trick will be how can could that Medtronic idea of just figuring it out for you ever work? I'd love it. I'd love for that to be true.

Scott Benner 1:08:30
Yeah. Okay. All right. Okay, I'm gonna ask you to hold on for one second. I'm a thank you first and, and I'm gonna ask you because I'm gonna ask you a question. I'm not gonna let anybody hear the answer to I just like the screw with the episodes. So. Alright, guys, Kenny's done, but I'm not done with Kenny. I think it's pretty fair to say that Kenny will be back on the podcast at some point. Kenny could be Jenny loopy. loopy Jenny. Kenny could be loopy Jenny. Kenny Jenny. Kenny loopy Jenny Jenny loopy Kenny. Kenny Jenny late. I'll work on it let you know. huge thank you to Dexcom the Contour Next One blood glucose meter and touched by type one. Please go to touch by type one.org dexcom.com forward slash juicebox or Contour Next one.com. To find out more about the sponsors. Continued gratitude to the community that has put so much time and effort into the DIY loop. Talk to you again soon.


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#312 Fox in the Loop House - part I

Scott Benner

Kenny Fox talks Loop Management

Kenny and Scott talk about DIY Loop and type 1 diabetes. part 1 of 2

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon AlexaGoogle Play/Android - iHeart Radio -  Radio Public or their favorite podcast app.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello, everybody, welcome to Episode 312 of the Juicebox Podcast. Today's show is part one of a two parter with Kenny Fox. Now Kenny's name might not ring in your head like, oh, Kenny Fox says that like Brad Pitt, but for diabetes? Well, no. But what Kenny is, is the data of a little girl who has type one diabetes, who really dug in to the DIY loop. And he understands it in a way that I find it inspirational. Now, Kenny and I are going to walk step by step through every setting in the loop, talk about it and kind of a big picture way. If you're not into a do it yourself algorithm for insulin pumping, I get that you don't need to be I'm not telling you to be. What I am saying is listen to the episode anyway. Because it's just another way of thinking about how insulin works. This episode of The Juicebox Podcast is sponsored by Dexcom. The Contour Next One blood glucose meter, and touched by type one, you can always go to touch by type one.org Contour Next one.com or dexcom.com, forward slash juicebox. To find out more about the advertisers. There'll be a little more about them later in the show. But for now, I think we should get to it. We're going to start right at the top by saying nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please consult a physician before making any changes to your health care plan, or becoming bold with insulin. And today. Also remember that what we're talking about is an algorithm that Kenny and I downloaded from the internet. It doesn't belong to a company, you just completely do it yourself. It has not passed through the FDA. So understand that while we're talking. Now that aside, using the algorithm. And watching the data come back from it and seeing how it reacts will absolutely supercharge your understanding of how insulin is working in your body. I'm telling you to watch a an app a computer algorithm decide about insulin. It just elevates your understanding. At least it did for me. It's taken me a while to figure looping out and I'm probably not all the way there. But I'm getting closer. And I'm going to keep having these conversations with people who are ahead of me until we're all at the same level together. Luckily, I found Kenny and Kenny understands looping. And that's why this episode is called Fox in the loop house. Part One.

Kenny Fox 2:50
My name is Kenny and I am into computers and technology and helping people. My daughter Tessa was diagnosed with Type One Diabetes last year, about a year ago. I have four kids ages 865 and two and Tessa is the number two child she is six years old. Okay,

Scott Benner 3:11
that's a six. She's had type one for a year when she's diagnosed, how soon until you discover there's a do it yourself algorithm that helps insulin pumps talk to glucose monitors.

Kenny Fox 3:27
Well, it was kind of in the emergency room. So is when we went in for diagnosis. I spent a couple hours here there about four hours I spent the first part of it just googling and trying to figure out what diabetes was if there's any kind of cure what would work. Then I quickly realized there was no option there. So then started searching for diabetes technology and kind of found Dexcom found your podcast has mentioned somewhere in there I vaguely remember. And then I found looping and Katie's post about fine tuning settings. And that sort of oriented me to what the mechanics kind of involved might be with insulin and the body and Bazell testing and all that kind of stuff. How long after

Scott Benner 4:15
test this diagnosis? Did you end up with a CGM and a pump?

Kenny Fox 4:21
We got one, about three weeks into diagnosis probably would have been another week earlier if I had just said Yes, right away. But instead I was like, Well, how much does it cost? And you can never find out those answers until you just say well give me the prescription and we'll see how much the bill is. So yeah, I've only just just just put it on there. And then I'll, when they call me and tell him how much it is we'll figure it out. But by the time I got the call back to tell me how much it was and all that I started listening to your podcast and it was like, Well, obviously I'm doing this so just send it to me. So yeah, so we got that about three weeks in. We started pumping about six months. in I think it was like June ish to the month of June pumping with an omni pod. I think we were probably only the first few people to ask for an omni pod with our particular Kaiser, Southern California. Group and then I was just waiting for the right link because only reason we didn't start looping right away. So I got it later on July 3, I think I started and we started looping.

Scott Benner 5:22
So tell me, you said you think you're one of the only ones you mean, like in the practice, a lot of people didn't use on the pods.

Kenny Fox 5:27
Yeah, it wasn't typically approved pump get this extra exception process to go through and actually talk to Syrah and she she's the one that I think really pushed it to finally make it like they had a known process for how to get an omni pod very easily. I just asked for rather than having to fill out a bunch of extra paperwork or something.

Scott Benner 5:45
So it was an insurance thing more than

Kenny Fox 5:47
Yeah, yeah. And then our endo are. We see the nurse practitioner most of the time, she's like, wide just haven't really helped a lot of people with the Omni pod. So it's kind of up to you. Okay.

Scott Benner 5:58
We're not gonna help you. Little did you know, back then they weren't gonna help you anyway, you were just

Kenny Fox 6:01
Yeah, right.

Scott Benner 6:04
So, okay, so you're pumping chest for a month, and then you get your Reilly link, and you're off to the races with loop. How long ago was that?

Kenny Fox 6:15
Um, yeah, so it was July and it's March now.

Scott Benner 6:20
So hold on August, September, October, November, December, January, February, March, that you're saying?

Kenny Fox 6:26
Yeah, the infamous got math.

Scott Benner 6:28
All right. Gosh, it's so easy. If you have enough fingers. It's very simple. So So eight months, so you've been doing it less time than I have? Is that right? Yeah, yeah. Ah, but you're way better at it than I am, aren't you?

Kenny Fox 6:40
I don't know. Probably. Yeah.

Scott Benner 6:42
Oh, look at you. Right. That's nice. I'm so accustomed to discussing things with women. And they're, they're much more demure. Kenny like you were really like, Yeah, probably am, buddy. But, but but ladies are always sort of like, I don't know, like, it's, um, there's a whole research on that, that we're not going to get into now. But anyway, women, they say you should stick up for yourselves at your jobs more because men will stick up for themselves, even if they don't believe in themselves, even if we're wrong, right. Whereas women who do believe in themselves sometimes won't. So stick up for yourself, just like Kenny did. Now let's find out if he can back it up. To Kenny, you and I have messaged a number of times, which I feel like is a bit of an understatement. More than more than a number of times. Have we actually spoken voice to voice once?

Kenny Fox 7:27
We did once when you were heading out to a conference, I want to make sure our didn't.

Scott Benner 7:31
Yes,

Kenny Fox 7:32
leave setup was all solid. Alright, so Okay.

Scott Benner 7:35
So here's what so has your path gone through the same iterations of this software that mine has pretty much right?

Kenny Fox 7:42
Yeah, yeah. Okay. All right. So,

Scott Benner 7:45
up until now, you've heard on the podcast, Katie came on, she described what looping was, I think I had a conversation with Jenny, somewhere along the way, I've had a meltdown conversation with somebody where I was like, I don't know what I'm doing. Now, please keep in mind for everyone listening, that I just can't record every day as I'm learning something. And I really, I do want to say this here. Because sometimes these episodes get listened to, you know, not in the order, I hope they get listened to. But when you began listening to this podcast five years ago, if you did, I already had a plan in place. Like I started, you know, the podcast, when I already solidly knew what I was doing. When we decided to try any kind of, you know, an algorithm based loop. I didn't know what I was doing. And so I've been learning it. And you guys have been really cool about it. Because in the beginning, when I said, we're gonna try this loop thing, people just inundated me with, like, explained to me how to do it. I was like, I don't know how to do it. I can't explain to you, I, what I found was they were accustomed to me knowing the answer. And I was accustomed to knowing the answer sometimes, or most of the times as well. And so I've been purposefully spreading out these episodes, to give me time to learn in between them so that I'm not saying I don't know, for two years, you know what I mean? And then suddenly, no, one day, so it's a weird thing. It's not exactly a documentary of us figuring out Luke that you're listening to but so I'm a little further along. Now. I'd actually say I'm a lot more further along now than I was in the last episode, which, while you would have heard it a few weeks ago, if you're listening now, in you know, March, it was recorded six months before that. So I'm a little ahead of last time any of you heard me talk about it? I'm going to start by saying that when the Omni pod horizon comes out, we're going to try it. If I don't like the on the hot, the on the pot horizon algorithm, I'm going to try the tide pool algorithm when it comes out. And I'm going to, I'm going to devour all of it. Because this Do It Yourself experience has cemented in my mind that an algorithm based pump matched with a Dexcom transmitter and glucose monitor sensor is it's better at enough than I was with less work and the things it's not good at. I'm learning how to stop it from not being good at that. Do you feel more comfortable than that? If you describe how you use it, how do you how do you feel about it?

Kenny Fox 10:25
I think I think I would try some of the newer ones too. But I'm, I'm pretty comfortable with it as it is, it's probably has some pros beyond what we were doing. Before that we had actually better numbers, I guess, on shots, and maybe even a little bit on the PDM. Then when we started doing loop, but what kind of the goal was to make this a little bit less mentally taxing, but also allow me to let her go to school and be with grandma and grandpa or whoever, without worrying as much. So that's helped a lot to you. But then what I didn't expect the reason why I would stick with some kind of system. But why I really like loop other than the obvious like I can see everything that's happening in real time, which no other system at the moment has through nightscout. That's a big deal and watching how school goes, especially because she's only six. It's also like the overrides the things that allow us to manage and make Sick Day management easier when you really have sick days that we'd like with higher beegees until after we started loop. And our settings are fairly dialed in by the time sickness showed up this winter fall and just using the overrides intelligently, as made our sick days look a lot like our regular days, probably like 90% of the time. So to me just a lot easier. So I wouldn't, I would want a system that would do that. But I could, knowing what I know now I could probably use any system and kind of mess with profiles and things of that nature to get a similar effect. Yeah,

Scott Benner 11:57
I'm starting to feel that way through. Let's let me clear up a couple things just to be sure. Is your daughter still honeymooning?

Kenny Fox 12:03
No. So we had honeymooning on and off for probably after the three or four months, and I and I kind of found a little pattern with that, too. Like whenever honeymooning was happening, it would sort of pull her blood sugar down, but you'd mostly notice it. When she was eating, she'd just fall immediately. And he like another hundred grams of carbs just to bring her up very slowly. And I think I read an article somewhere that was talking about how the body's like neutral state is 72, sort of like where you wouldn't see any insulin or glucagon in the bloodstream. And so after I read that the next time she had a big honeymoon spell lasted almost a week, where she was just on her basal insulin, but no, nothing no Bolus thing unless something out of control was, she would just fall rapidly and then level out right around those 17 depending on how accurate the sensor was at the time. And if I just didn't treat it and just waited, she would like level out and hang out down there. She'd do it at night, you know, my alarms would be going off because she'd be showing 6869 like a blood test. And she's in the 70s I just finally had to turn my alarm down to like 65 or something after I knew the sensor was accurate. And she just cruise down there all night. And if I tried to give her honey or something to treat, she just come right back down within 1520 minutes. So we had a few honeymoon periods. And I haven't seen any for a good six months or so. It's interesting. So you saw stability to lower number during the honeymoon. And if you tried to put in carbs, you think her body was pushing it back down again? Yeah, because we had we had bazel locked in probably a week after we had probably less than a week after we had the Dexcom. We were close. So we had to back off just a hair on the lantis. But and we're having pretty stable nights. But yeah, the what I so I just trusted that the bezel was right. And if I just like waited, as after I read this article, it just Yeah, she just cruised kind of flat around the 70s it was pretty amazing to watch because you could see like a minus 15 or 10 point drops, and all of a sudden she just stopped and stay there. So it was it was pretty, a little scary at first but but once I saw it, we just wrote that whole week out like that I'd let her come down and didn't panic until she hit 60 or something like that.

Scott Benner 14:11
Nice. Arden had an illness recently that was one of those that you couldn't really see on her. You know what I mean? Like there was no huge change in how she was or how she felt or anything like that. But her blood sugar's were lower constantly for like two weeks like she didn't need the we went through about four or five days where bolusing for food was like a crapshoot, like do Is she gonna need this, how much of it like that kind of thing. And then she, you know, whatever was going on, it stopped and we're back in it. But more importantly to our conversation here. An experience just yesterday that I'm going to start by telling you about and then if it's up if it's okay with you, I'd like to walk through the settings of the loop loop algorithm and talk about each one of the settings with you and how you think about them. Sure. Cool. So the thing that happened yeah. Yesterday right? So Arden poor Arden Arden had her period. This whole this whole podcast. She's gonna listen back. Like, are you kidding me? Arden has her period right? And it got a little heavy. And so I over the weekend. Now I flew Friday morning to Atlanta to give a talk. Which by the way went great and thank you Atlanta. That was really wonderful. I got to meet Jenny in person for the very first time. And got down there Friday. Went to bed, got up, get my talk came home. Get up Sunday morning. My wife and I are going to drive two and a half hours to see my son play in his second start as a college baseball player. Now, excuse me his third start that we were going that that we were going to see it for the second time because Saturday I didn't go I was obviously in Atlanta and he was playing in Washington. So while I was speaking to a large group of people, my son got his first ever collegiate hit playing baseball, which was really interesting because my wife texted me something. I think it had a curse in it too. So I can't read it to you. But he got a double for his first hit. I read it and then got a little like weepy in front of people. for a split second, I had to pull myself down, which is very interesting. Anyway, I, you know, I finished my talk up, I got on a train, I get to the airport, I come home, I walk into my house at 10 o'clock at night, and my wife and I are going to get up at seven in the morning to drive two and a half hours to a different baseball field to see him play. But Arden's not feeling well, because of her period, she's tired, and she doesn't want to come. So luckily, there was no weirdness going on with her blood sugar's like there had been prior weeks, it's been incredibly steady. And I set an override and a temporary target. And I set that out, like for forever thinking that way she could sleep as long as she wanted. And you know, least nothing there would shut off or go back to the you know, normal settings. And I figured she'll get up later in the morning and she'll know, she'll text me and I'll tell her what to shut off and she'll be fine. And she'll go about her day and she's gonna do homework and hang out around the house. So this is damn near embarrassing, and hopefully she'll hear this years later and actually be a little embarrassed by it. But at 430 in the afternoon yesterday, Arden sent me a text and said, I'm up. Like what? So turns out she was sick to her stomach the night before and didn't go to bed till like three in the morning. And still she slept over 12 hours, which is insane. But, you know, at least it's a little better than had she gone to bed at 11 and slept till four. But No kidding. I am going to pull this up. I scraped because I had been watching the entire time I was going I want everyone to keep in mind. There were telephones in Arden's room that I could have bled to wake her up. I could have sent you know, Find My iPhone to wake her up. My neighbor knew Arden was by herself here, you know, like we didn't just like abandon her in her bed, like kind of a thing. You know, both sides of my house are being watched by my different neighbors. But I am going to admit I didn't think she'd sleep till 430. But I am looking at this graph. 24 hours I left the house and her blood sugar was

Unknown Speaker 18:17
at

Scott Benner 18:18
and it never went over 110 it never went under at the entire time. She slept from 8am till 430. And I'm going to tell you right now, Kenny, I used to be really good. And I still am really good at using insulin with a pump and a CGM. But I could not have done that.

Kenny Fox 18:37
That's pretty, it's pretty unreal. I wish my kids would sleep 12 hours and keep their blood sugar in range

Scott Benner 18:41
just to leave you alone. Right. But I could not have accomplished that. Without that algorithm. There's no way she would have had to gotten up. I mean, not that that would have been the biggest thing in the world. But my point is, is that that she could not have slept, but ended up honestly being eight hours with us not in the house without any intervention whatsoever. And that's the loop. That's what me understanding the loop is what made that happen.

Kenny Fox 19:05
What kind of override Did you set a higher or lower one?

Scott Benner 19:08
Lower, I took insulin away. So her so Arden's daytime settings are more aggressive than her overnight settings, mainly her basal rate, and her insulin sensitivities are stronger during the day than they are overnight.

Kenny Fox 19:25
School and weekends are just

Scott Benner 19:27
Well, this weekend. It's just for school. And excuse me school and weekends while she's awake. The problem is during the weekend if she sleeps in her daytime settings that begin at like 7am are viciously too aggressive for her to be asleep with. Gotcha. Alright, so inside of the settings of the loop, and for clarity, we're using the Omni pod with the Dexcom gs six you are as well. Yes. Okay. There are there's a setting for correction range, suspend threshold bazel rates, delivery limits. Insulin model dosing strategy carb ratios, insulin sensitivity. And Kenny and I are going to go through all of them now. Exciting. Yeah, I it is actually kind of exciting because I think you know way more about this than I do because your brain works more technically than mine does. But I'm hoping I'm hoping for today you're going to be the technical side. And I'm going to be the, the blue collar side, you're basically Jenny for this looping episode. Okay. Okay. So let's just start at the top correction range. When I got loop initially, what was told to me was, you know, this is the bottom and the top of, you know, like it, it was, it was explained to me as target. So, you know, I'm shooting for between 80 and 100, for example, or from between 90 and three, I don't care if it was a target range. But as time passed, and as people came onto the podcast and spoke with me and I met people privately, I began to think of correction range as when the when I want the insulin to turn on and turn off, its its aggressiveness, its corrections. Somehow, that tiny difference in language was a big deal for me, because I wanted Arden's blood sugar to be no lower than 70. And no higher than 95. Like That was my you know, like, that was my pie in the sky hope, right? But it didn't work that way. And I'm going to tell you what I ended up changing it to, but tell me what yours is and how you think about it.

Kenny Fox 21:37
It's, it's still like a target, but it's where it's where the blood sugar should land after the time insulins all done. So when it expires, when the insulin action time is over. So that's the unfortunate part about that is it's doesn't, doesn't try to keep you in a range at the moment, it's more concerned about where you're going to end up. And that's a little frustrating, I think, for, you know, probably juicebox folks, like when we were on shots, we would her carb ratio, I use Tesla's carb ratio stronger than probably what it needed to be because a carb ratio, strictly speaking, is you start at one number you eat, and then you end up at the same number eventually, which would be when insulins done, you know, a long time in the future. But I'm not happy with the spiked comes with that even with a proper Pre-Bolus. So we always dosed a little bit heavy, knowing that she'd probably be eating in three, three and a half hours, no big deal. And so that's, we were always thinking in blocks of more like, three or four hours, not five or six hours, which is how long loop says, at the instant. And the last. So having a target way out there six hours is, can be a little tricky. So I still use the target country correction range as where I want her to end up because that's, like, overnight, that's really applies. But you have to get used to reading the prediction line, and then figuring out how to tell loop everything that you know, so that where you end up even in the middle of that is sort of where you want to be and still try to shoot for a landing. That makes sense.

Scott Benner 23:09
So this is super interesting, because I'm gonna learn something here from you for sure. Because I've come to ignore, ignore the prediction line completely. I act like it's not there. And it's telling me nothing, but you're getting a lot out of it. So this is this is gonna be terrific.

Kenny Fox 23:23
Yeah, I had to get a lot out of it. But eventually, I figured I couldn't have the same experience that you and I were both dealing with when we started which is sort of yelling at loop and fighting with it. So I did figure out how I could tell loop what I knew. So that prediction on looked reasonable that I mostly agreed with it. And if I didn't agree with it, then I needed to figure out why. Either I didn't agree with it, and why loop thought otherwise. And eventually, some of those things, you know, mostly if it's around food, once you get most of settings close. It sort of helps me figure out how do I change things in the moment when things aren't working the way I want to, to get that line to look right and not not be too wrong.

Scott Benner 24:02
While I was in Atlanta, I was talking through something with with Kelly Arden just came through a she's a lower number. She was like 65 as they were going to food. And so putting in, you know, the the carbs, the accurate carbs. This thing didn't want to give her insulin right away. Oh, yeah. Right. So I told Kelly, like, just you know, we're gonna, you're just gonna manually bolus enough insulin now. And you know, so there's at least a Pre-Bolus going on, then come back around and check the pending insulin in a little while she starts going up and then you can put the rest in. But I used the sentence. The Loop thinks, and that's where Kelly was. Wait, what? Yeah, I said so. So I said, there's what you know is going to happen from your history with insulin. But at the moment, the loop doesn't know that. It's not, you know, it's not a it's not a living, breathing thing. It's an algorithm. And it's taking these settings, and it's taking what you've told it. And it's saying, based on what my settings aren't what you said, you just took in as carbs. This is what's going to happen. You don't need this insulin right now. But, you know, differently, you know, you know, something it doesn't know. But this is what loop thinks. And I was like, now here's how to tell it something to make it think what's true, instead of what it thinks.

Kenny Fox 25:26
Yeah, exactly. Meant to think like that.

Scott Benner 25:29
It's so funny, because you said, Yeah, exactly. And my wife was like, this thing is bullshit. What? So we two different conversations. And I said, No, no, I swear to you, I'm being as clear as I can be about this right now. This is as clearly as I know how to speak about it right now. So so. So for clarity, where do you have your correction set for your daughter,

Kenny Fox 25:53
usually around 85 to 100, during the day, overnight, 80 to 90, I think right now, I just changed it to 8585. Since we're on the United spoken about this route using the feature testing branch for call automatic bolusing. And that helps keeps us I can give her like a single number target and sort of try to shoot for 85 overnight, for example. And it does a pretty good job. But she has such low basal rates we can get into later. But with a traditional loop, but the bazel modulation, it just doesn't, it's too slow to act, because her basal rates are so slow, so low that it would take you know, 2030 minutes to give her a little tick of insulin from the Omni pod over over 20 or 30 minutes that it's I prefer the auto bullets like Oh, she needs it. She needs it now. So I couldn't give it to her. So I can, I've now changed it from a range of, you know, 1520 points to five points or so

Scott Benner 26:49
yeah, so Arden's right now is set it at seven to 95 during the day. And that started with me just like going alright, I, when I have it at 85, she gets a little low, sometimes I make it at six, she's getting a little low last time, let me make it at seven, then I'm starting to like feel like I'm fine tuning it. But I believe that after this conversation with you, I'm going to decide that there's a different setting I should be looking at instead of this correction range, but but we'll get to that. So. So for clarity, if you set your range at whatever, you set it at 90 and 150, you think I want to live between 90 and 150. That's not how this thing is thinking this thing is thinking that often the future based on everything that's going on right now, eventually, I want to keep you from going under 90. And it could be talking about hours from now is that right?

Kenny Fox 27:43
It might even be not even under 90, but it might usually what happens after you've done your initial bowl. So usually when you set up carbs, it initially tries to say, okay, you want to end up at the bottom to the middle or the bottom of that range you've set when it's choosing how much insulin to give you. But once you're past that, it's mostly shooting for either the middle or the top of that range. So if he's at 90 to 150, and you end up at like 180, it's really only a target to bring you down by the time the insulins done kind of around 151 3140, probably in that range. So if you prefer to be more like a 100, but you use 150 as your top range, you're more likely going to be sitting especially overnight, let's say around that upper line. So if you were to enter, it's a prediction or to enter into that range, it's not going to take any action, it's like it's fine, as long as you're going to land somewhere in here. Now you don't 150 it's cool with that, if you're going to under 90, and it tries to back off, if you're going to get over 150, it thinks then it's going to add some more. But if you're gonna land anywhere in that range, it's not going to take a whole lot of action. So if you want help to get lower into the 110 100, somewhere in there, instead of 150 you should probably have your target market where you'd ideally like to be but balancing like you mentioned, the risk of kind of going low if you shoot too low.

Scott Benner 29:02
Well tell me why you wouldn't just make the correction range 85 and 85. My top and bottom goals are 85 and 85.

Kenny Fox 29:10
Why would Yeah. So normally, it's just the amount of like, back and forth the amount of work I guess Luke puts into it. So if it's if the correction if the prediction kind of moves up or down a couple points away from that line, it's going to try to do something so it's going to change the basal rate temporary basal rates using and what the Omni pod. This is the issue we both struggle with early on was every time that bazel rate changes every time Luke makes a change the timer that the Omnipod uses to start delivering on that rate sort of resets. So if you need a couple of you know, deliveries point 05 within a certain hour, let's say then that amount, how fast that's going to tick. That counter starts over every time it changes. So it's like hey, if you need five in an hour I'm going to spread it out

every 12 minutes, and then the loop changes

Scott Benner 30:05
the Yeah, easily again, and then it starts all over again. So you're never really getting as much of it through that model is through the Basal model,

Kenny Fox 30:13
not as quickly Yeah, so what will happen is if it changes again, so if you need like five in an hour, it'll do every 12 minutes or so, let me just start over as is okay, and 12 more minutes, I'm going to give you something more than in five minutes sleep makes a change again, then it's the counter starts over. And once that calculation for how often that happens was fixed, at least what would happen is in five more minutes, it'll probably pick an even higher rate. And if five more minutes, they'll pick an even higher rate. But for someone with a lower insulin need, whether your basal rates are higher or low, but you don't need very much, it may take three, four or five cycles before that first delivery is fast enough that it actually gets in there, if it keeps changing every five minutes. So if you pick a range, it's more like it's less likely to have to change, if you're going to land somewhere in the range you picked. It's like, Okay, I'm good, I'm just gonna stick with this one, for a little while, that's kind of most of the reason otherwise, it's more, I just don't care if I'm 100. Or if I'm at five, I'm fine with either, so then you would just leave it there.

Scott Benner 31:12
So we're gonna jump around in the settings a little bit like the next setting in the, you know, when you look at it would be suspend threshold. But yeah, I'm gonna skip over that for now. Because I think that what we're talking about leads into insulin model. And if you disagree, then obviously, I don't know what the hell I'm talking about,

Kenny Fox 31:28
well suspend, suspend is easy enough suspend is in that situation you gave with Kelly loop is really concerned with you not going low. So if 60 whatever it was below, your suspend, that's why it wasn't giving insulin, it doesn't care that if she doesn't have a Pre-Bolus, the prediction, you might even show she's gonna go to 200 loops, not worried about that, I just worried about the fact that she's currently low, so I shouldn't be giving more insulin, which is a little frustrating. So that's, that's really where suspend is, if any part of that prediction line is going to go below suspend, then you should probably, it's going to stop giving insulin so you want to make sure you're not seeing lines dropping that you don't agree with you don't think she's gonna this year she was gonna go low, then you probably need to fix some settings. Otherwise, that suspend threshold is gonna like banging your head against the wall. Why is it cutting insulin when it shouldn't be?

Scott Benner 32:19
Quick hitting ads today, the dexcom g six continuous glucose monitor, you want to check it out. It's at dexcom.com forward slash juice box. type that into your browser right now. If you're not good at typing, click on the link in your show notes. It's right there in your podcast player. There's notes in your podcast player, just find them and click last thing you could do is go to Juicebox podcast.com. And click from there. All of these options are viable ways to get to the sponsors. While you're there, check out the Contour Next One blood glucose meter, go to Contour Next one.com there's a little button at the top, you can find out if you're eligible for an absolutely free meter. This meter is by far the most accurate one that my daughter has ever used in her entire time with Type One Diabetes. Lastly, if you'd like to see some lovely people doing wonderful things for people living with Type One Diabetes, check out touched by type one.org. I'm doing you a favor. I'm shortening up all the ads today. You can do me a favor and click on the links dexcom.com forward slash juicebox. Contour Next one.com touched by type one.org. That's all I'm asking today. No big sell. Just go check them out. book I'm done before the music. It's like you owe me almost how there's so much time left. It's kind of weird, right? touched by type one.org helps people living with Type One Diabetes, amazing organization. Contour. Next One best blood glucose meter I've ever seen Dexcom g six continuous glucose monitor game changing technology for type one diabetes. There I said I wasn't gonna tell you more about there's just weird. What I was gonna jump to next is insulin model. So yeah, so that's, I guess for conventional pumpers. That's insulin on board measurement. The idea that insulin lasts in your body for X number of hours. It's it's based in that idea, but not really like good. So this is more about the pump. I've come to think of it as the window of time that the pump considers the insulin for like, like if you Bolus and your model said it six hours, which I think is the default, right in the, in the in the algorithm. You know if that's a scenario, it's thinking, Oh, you definitely won't be high six hours now because we put in enough insulin right now. But if your settings are wrong or the foods you know, whatever, you're dehydrated, all the other things variables that the the algorithm can consider. That's not going to work for you. And so that's why you see some people with the loop. They're like, Well, my blood sugar went up to 180. And it sat there for like, five hours. And then it but it did finally come back down. And you hear them say that, like, that's some sort of a win, which I think for a lot of people, quite honestly, is a win. But for you, and I'm probably most of the people listening to this podcast, like, I don't want my budget to be 174 or five hours. And Kenny was the first person to say this to me, because steadfastly, everyone I spoke to said, don't touch the insulin model. Six hours, leave it at six hours, leave it at six hours. And Kenny was first starting to say to me, like, yo, mine's not at six hours. And this works a lot better for me. So mine is set. ardens is set at five hours and 15 minutes, I think. And yours is five, is that right?

Kenny Fox 35:52
Yeah, so hopefully I don't get in trouble.

Scott Benner 35:57
First of all, this Kenny's not in any way related to the to the the looping, like the people writing these algorithms. You're just the person using it.

Kenny Fox 36:05
Right? I am. And I would love to meet the people that are Katie and Kate and others. So um, yeah. So mindset at four and a half hours. And I'll tell you how I got there. So before? Really?

Scott Benner 36:17
Good. Tell me.

Kenny Fox 36:18
Yeah. So when we were on shots, I found apps like extra up and some others that would let me track insulin on board, I just found this cool app. And honestly, I was too cheap to buy a phone that would be useful with the approved dex comm app for my daughter. So I just grabbed my old android phone down next trip and said, Okay, well, that means I have to build a nightscout site. So I've built a nightscout site. So we put extra bond extra put all these like cool knobs and levers I had to Google about every time I was trying to figure out what these different pieces mean, and one of them was insulin duration. So what I did is I just once we got the bazel locked in, on my daughter, I would just watch, obsessively every day, when the insulin onboard time when the heard line would stop moving even just one point, like just nice and flat. And so it was between four hours, and like 15 minutes and four and a half hours somewhere in there. You know, we had to give some sensor lag and other variables, some sway there. But I ended up just dialing up from four to about four and a half on extra nightscout. And so I could with confidence know, when she would level out. So like, you know, if she didn't have a snack between lunch and dinner, she would level out right around five or six, and I could watch the iob number go down down down to zero. And sure enough, she'd be flat, I wouldn't treat no matter how fast she was falling zero would be, she was fine. It was fine. Basal was fine. Everything's happy, she's nice and level. The other benefit to that was I was always tracking how long it would last. But then it also allowed us to do things like treat and I know how much to treat for so I'd look at how much insulin was on board. If she was starting to go lower than I wanted to, you know, at that kind of three, four hour mark, knowing that I give him too much insulin most likely for that meal. And then I would just turn that insulin on board number into a carb ratio, and say here have this many carbs, and then she would level out. And you know, once the insulin board time was done, when it was zero, she would turn off level out. So that kind of predictability was important and comforting. And also, let me have the confidence to change the duration of insulin action in a loop. But I didn't do it initially, I really wanted to give lupus as a chance to kind of prove itself and say, Well, maybe six is right. And I read Katie's post about why messing with the insulin reaction time is could be bad. But frame that conversation she's having around the fact that pretty much every endo will have you set your pump insulin action time to something like two and a half, three, three and a half hours, which is obviously not right. So when they when you get into the loop group and you read the docs and people are really hard about Hey, you got to stick with six hours. It's because people are convinced over you know, years of time that insulin only last two or three hours and that's not the case. So and six is definitely safer than say five or four and a half it would safer to over represent how much insulin is in your body while annoying and possibly keeping you high. If it's not actually how long it lasts. It's still safer than under representing the insulin so and for some people I've helped out five and a half, six hours is about right so we don't really mess with it. But there's still a chunk of people that five is probably like a really good number that gets it pretty close. So I was just watching all that's all I could watch on shots and so I knew that number going in or most people don't really have a sense for that. What that number should be so you can test for it. But yeah, I changed mine to four and a half.

Scott Benner 39:44
So I think that it's it's pretty obvious. If you listen to the podcast that my concept is I try very hard to break the wall between the the time I don't know how to put this, let me get up to give me a second Kenny. So obviously, everything about insulin you do now is for later insulin doesn't always work exactly the way you want it to in the moment you put it in your body, right, it always takes time to build momentum or power, it peaks sometimes, you know, it's always, it's always about later about later. But I feel like this is gonna be a ham fisted explanation, because it's still something I've been mulling over my head for a while, I don't think I've ever said it out loud. But I think of the management of insulin, like the momentum of a car climbing a really steep mountain, you need to get to a pace and stay at that pace. And it's going to become more and more difficult as you go. But if you just keep this pace up, you'll make it to the top. And so I like the idea of there being active insulin all the time when it's needed. And it's so that so that the food or your body function can never really overpower the insulin that's active. And that so that the insulin is not overpowering the body function, I don't want anybody low all the time. Not saying that. I'm just saying that when you accelerate, and then take your foot off the gas, you drift back, and then it takes more effort to get going again. And so you know, instead just put your foot at one spot on the accelerator and head up the mountain. And I know that's not 100% clear. But that's the background way I think about using insulin, it's the closest thing to creating constant insulin action so that what's happening now with food is being in real time impacted by insulin because there's always insulin coming from the past to help you now. So instead of putting in insulin now for later, I think of it as putting in insulin later before for now.

Kenny Fox 41:52
Constantly, that makes sense. Yeah, it's way I have a really old big RV. And so driving up a hill, yeah, if you back off just a little bit, someone cuts you off or something you're, you're now Don't slow the whole time up the hill just to make it up. So you get to keep your momentum going to stay ahead of it. Wait, I found with diabetes, you always have to be kind of looking ahead a little bit always planning ahead and looking ahead, like if you know you're going to eat, you might as well give some insulin, but getting looped to kind of agree with you on that. Or, or to know when to how to use loop to be bold, so that you can keep the insulin moving when you need it just takes a little bit of practice.

Scott Benner 42:27
Yeah, it's just sort of this. It's tough because I try to say things a lot of different ways so that it eventually hits everyone. But I'm always talking about insulin for now is for later. And I know this is gonna sound like the same thing. But it's not if you just kind of like, you know, just microdose a mushroom right now and listen to what I'm saying for a second, okay? insulin for now is for later, but insulin before is for now. And that's probably more how I think about it than how I teach it. I teach now for later, but I think before for now. And so the minute you start taking away insulin now, you're just gonna be getting, you're just gonna get high later. And and I hope that makes sense.

Kenny Fox 43:19
It did to you, which is in the same way, in the same way, if driving my big vehicle, you take away the speed at the bottom of the hill, it's gonna affect how easily I can make it up to the Hill, right? I just don't have the power of momentum to push me up an hour.

Scott Benner 43:33
Or if you don't have that momentum going. The minute you come up on a speed bump or a branch to drive around, yeah, you're gonna lose your, your momentum. And now all of a sudden, the detour wins. Like, right, like, all of a sudden the meal wins or the you know, the spike in your adrenaline wins, that thing wins. Because you're it's the same reason why at the end of the story that I just, you know, I told you the beginning Arden's blood sugar, no lie 8am till 4:30pm while she slept right in that tight range, but when she woke up, she says to me, Hey, I'm gonna get a bowl of cereal. And all I told her was this, that's fine, your blood sugar is going to get high. Here's our goal. I'd like to try to keep it under 180 get it back down without you getting low. Now keep in mind, I'm not there. My daughter's about to have Froot Loops. She's not going to measure them. I'm not asking her to okay. And so I told her, you're going to get high. And she said on Pre-Bolus. And I said, Yeah, not gonna matter. Because you've been living on a deficit of basal insulin for the last eight hours, right? The before is not strong enough to handle the now and you were going to Pre-Bolus and we're gonna smash most of it. But unless you're willing, but you're at so I can't have you wait 30 minutes. I can't tell her to put in you know, 11 units of insulin and wait a half an hour because if she doesn't eat that cereal the exact right time, and God knows what that is that insulin is going to crush her. And I'm going to come home to a puddle of a kid on the ground, right? Or at the very least my neighbor is going to be handling something I'm pretty sure he didn't think he was going to be doing on Sunday. So I said, Look, we're gonna deal with it, there's gonna be a spike, right? So we're going to, you're going to go downstairs. The first thing I asked you to do, Kenny, I don't know what other people think of in this situation, like you would think Pre-Bolus thing. I said, Go make sure the cereal is not stale, because you don't need it all the time. And make sure the milk is fresh. Because the last thing we need is 10 units of insulin going in you and then you saying this milk doesn't smell right. Because I don't know how to eat that fast. You know what I mean? So, um, so she checks all the food, all the foods, right? I'm like, I cool. You know, go ahead and put in, you know, this, I think we use a massive amount of carbs, like 80 carbs or something like that. And it wanted to give her 10 units ish, like, right in that space. And I was like, Yeah, go ahead and do it. And I said, try to wait 1015 minutes if you can, and but I don't want you to wait much longer because we're there. And she did. She ate and it held on for a while. Right that Bolus thought for a little while but all of a sudden 15 I think no fifth is longer that 3530 ish minutes later, we got the dreaded 126 diagonal up now I know everybody's different. But 126 diagonal off means to me they penciled in their

Kenny Fox 46:37
index column showing a diagonal year you're having a problem Next comes arrow changes after two readings that are equivalent to like a diagonal so like if more than five like six to 10 points every reading it needs to have those in a row before it changes the reading hundred percent to a Yeah, which is way too slow. I like using extra power I get to see the plus and minus that. Reading the reading and I don't have to worry about the stupid next Camaro so while

Scott Benner 47:03
that super stiff line is still there, right on a second Arden's talking to me here. While that's super stiff line is there at 105 or 95, or whatever. I'm like, That's not right. There's no way that that cereal This Pre-Bolus has not been alive in here long enough to to hold back Froot Loops and milk, even for 15 minutes. So I'm like it's gonna go up. Oh, wait, I'm gonna go to lunch right now. Excuse me for a second Kenny. You guys is interesting artists coming out of gym. Then how are we gonna do this? With the carbs and like this. I'll talk you guys through this Hold on one second. I can finally talk about a loop thing about a lunch. Arden's leaving gym right now. And she was away from her CGM. So her blood sugar went from like 75 to 60. While she was in gym, she feels fine. She's going to eat that's not an issue. I'm not worried about that. So we're going to tell the loop that she's going to have 35 carbs. We're going to tell the loop to consider those carbs as a two hour impact. And then we're going to tell it 40 carbs and consider that as a three hour impact. So Arden has Zell's and a chocolate chip cookie, a half of a bagel, a pretty big bag of grapes. A Clementine a bag of popcorn? I can try to guess those carbs for everybody if you want. I'm gonna guess the actual test hitting carbs. Yes, I'm guessing the bagel at 25 I'm putting the putting the grapes at 15 to 18 now we're at 35 or 40 the cookies are gonna be another five for the chocolate chip. I'm at 45 the puzzles are probably 10 more I'm at 55 the tangerines like 12 or 15 I'm at 6570 I don't know popcorns 10 at ardens. Carberry shows 7.42 to one now as soon as it tells her that it says Of course not to give her insulin because their blood sugar 60 Yep. So I'm gonna say when are you going to eat? Do when do you begin eating?

Kenny Fox 49:32
So have you tried not giving Pre-Bolus in the situation since you're on the automatic Bolus will give a fair amount pretty quickly and then just text her and say hey, give the rest later.

Scott Benner 49:41
So I think of it just like that. But opposite. So if she tells me she's going to start eating right now. Like right now right now we're going to Bolus

Kenny Fox 49:51
Oh, yeah, that

Scott Benner 49:52
would just give it Yeah, sure. We're gonna put in probably like, I'm gonna guess like five or six units right now. And then I'll let the auto Bolus do its thing a little bit or will check for pending insulin and just do the whole thing,

Kenny Fox 50:05
if that makes sense. Well, the wonderful thing about the auto bolus is that since it loop doesn't use increased Temp Basal at all, there's not going to be a whole lot of pending unless, I mean for three hour, I guess there technically might be some pending, but there's almost never any pending, it's always recommended Bolus. So she can always just tap her watch her her phone and just hit the bullet screen, it should just have a recommendation. So if an even more insulin, there's always a recommendation with the auto Bolus branch, which I really love, because my six year old, I can just say, Hey, Bolus, and she just turns the watch over tops to Bolus green. If there's something there, she takes it. And then nightscout I can see if there is a recommendation before it would, you know, increase the Temp Basal rates? And it would it would loops like I got it, don't worry about it, I'll, I'll take care of it. I'm like, yeah, you'll take care of it eventually. But I don't, it's not fast enough. But I can't tell my daughter to pull it put this much in and trust that she'll hit the right number, using the watch or her phone. So now there's always a recommendation if she needs more. So I can say hey, I think you need all of it right now. So just just hit your watch. And she handles it just fine.

Scott Benner 51:10
So what I ended up saying is she said, I meeting like right now I'll be putting food in my mouth in three minutes. So I said seven units. Eat as soon as possible. Let's talk again in 15 minutes. But you just said you can see you can see recommended insulin on nightscout. I need to let you I need to let you dig around in my nightscout apparently I don't think I see that.

Kenny Fox 51:32
Well you have that loop pill right underneath the time underneath the clock.

Scott Benner 51:37
Right. Okay, let me

Kenny Fox 51:38
think. So if you hover over that loot pill with your mouse or if you use it on your phone, you just kind of tap on it. You should get like a list of information in that hover area. And one of the things you should see at the very end of it. It only shows up when there's a recommendation below you'll see the last things are listed in that list of all kinds of crazy information. So is a recommended Bolus

Scott Benner 51:58
I see the loot pill so right now I have four minutes ago squiggly squiggly line 103 what is squiggly line 123 mean?

Kenny Fox 52:06
The I forget that icon squiggly line I think means everything's Oh squiggly line 103 got it. Sorry, five minutes ago or four minutes ago, a squiggly line means eventually. 103. So the the end of the prediction line is 103 at the moment.

Scott Benner 52:20
It is I'll be

Kenny Fox 52:21
Yeah. All right. And but that will only update you know she's updating it on her phone so you won't see the next update until you know the next sleep cycle till next time it uploads night to night scout. So even though her prediction line probably doesn't look like that because she's put in, you know, seven units. You'll get the update eventually and you'll see the the eventual number will update.

Scott Benner 52:42
Okay, so Arden's all squared away. Let's go back a little bit here. So insulin model, when you have yours, even lower than mine is what's the intention of making the insulin model a shorter time period. And that's where we're going to pick up in part two, which will be out in just a couple of days, it's going to give you enough time to absorb this, maybe go back and listen to it again. And then we're gonna get through the rest of the settings list on loop. Hope you found this interesting. I just think Kenny speaks so wonderfully about loop. He's very clear. He understands exactly what he's saying. And he's helping me a lot to bring things into focus. If you agree, definitely check out part two. Coming up, I think Thursday night. Thank you very much to the sponsors. dexcom. Contour Next One blood glucose meter and touched by type one. Check them at a touch by type one.org dexcom.com forward slash juicebox. Contour Next one.com. Of course, there's always going to be links in the show notes of your podcast player. And at Juicebox podcast.com. I appreciate you supporting the sponsors.

If you're looking for more episodes about loop, check out Episode 227 diabetes concierge. Episode 252. A loopy few months Episode 304. loop de loop.

It bears repeating that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. A huge thanks to all of the people. Most of whose names I'm sure I don't know, who have put their blood sweat, tears time, effort, heart and soul into this algorithm. It's hugely, hugely, hugely appreciated by me and I'm sure by everyone else


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#304 Loop de Loop

Scott Benner

Like a Melody in my Head

Melody and Scott talk about DIY Loop and type 1 diabetes. 

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon AlexaGoogle Play/Android - iHeart Radio -  Radio Public or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT


DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello everyone and welcome to Episode 304 of the Juicebox Podcast. Today's show is super sized. And because it is super sized We will also give it a super sponsor, how bout touched by type one.org used to be dancing for diabetes. Same great organization new name, check them out touched by type one.org. And who else should be the sponsor of today's show? That Contour Next One blood glucose meter. If you don't know about ardens meter, the Contour Next One, check them out at Contour Next one.com. You can even click on links in your podcast player, the ones that are available at Juicebox podcast.com. We're at your next endocrinologist appointment, just ask your doctor to switch you to the Contour Next One.

So far, I've done two episodes dedicated to looping. If you don't know what looping is, you should go back to Episode 227. And listen to that one called diabetes concierge. And then jump to Episode 252. A loopy few months. Diabetes concierge will explain to you what looping is in detail with Katy de Simone. And then in 252, it's a 14 week follow up to Arden's time looping. Today's episode is me trying in vain to figure out looping. By having a conversation with a mom, who is also looping, I want you to keep in mind that as I speak these words, it is six months past when this episode was recorded. My goal here is for you to be able to take this journey with me as I learned algorithm based pumping. But for me to be far enough ahead in real life, that when you get through listening to it, I'm able to already start talking about it. So this is going to be the last episode of me being like looping, I don't understand. And the ones that will come in the future will be a little more about what worked and what continues to work. Because I believe that algorithms are a future, treat them well and let them lead the way. Please remember this. Very, very important in this episode. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. Remember the algorithm that we are talking about here today is do it yourself. It is not from a company. It was downloaded from the interweb it's not even FDA approved. If this all sounds confusing, Do you seriously, go back to Episode 227. Then listen to 252 then come back to this one.

Unknown Speaker 2:36
Hi, I'm Melody.

Melody 2:43
Melody. Would you like me to introduce you? Sure.

Scott Benner 2:48
Okay, a lot of pressure, saying who you are. Then the rest of this should go

Unknown Speaker 2:55
really early.

Scott Benner 2:57
So melody is someone I asked to come on the show because she is the overseer of people's looping. And she understands it in different ways. So who do I reach out to that I reach out to Pete? Yeah, okay. And Pete works at tide pool and your husband works with, with Pete that tide pool, and then pizza to your husband.

Unknown Speaker 3:19
Pete sent an email and said, Hey, would you be interested in doing this? And Matt said, Melody would

Scott Benner 3:25
see how easy this was to say who you are.

Unknown Speaker 3:28
So many people passing the buck in that situation. So

Scott Benner 3:32
melody is Matt's wife or the way melody prefers to think of it Matt is Melody's husband. And Matt works with Pete and Pete works at tide pool and tide pool is taking the DIY loop app and trying to get it through the FDA. Did I say all that right? Yes. All right, look at me. Now. My goal was I've had two looping episodes so far right? At first I had Katie on and Katie really explained looping to me and brought me in from the ground up, because I really did not know what it was or what I was talking about. I was pressed by a listener to find out more about it. And I was completely happy with my daughter's care. And I didn't want to loop I was waiting for Omni pod to come out with whatever horizon is gonna be and I was gonna try that. So I got pressed into it by a listener and I thought, you know what, True enough. This is going to be the future. And I should understand it so I'll jump in sooner and try to wrap my head around it. So Katie came on she explained it to me Katie was really cool. She sent me her Riley link. an extra one we trot got set up and tried it. I hated loop. In the first three days, I almost quit. In the second three days. I really almost quit. I've almost using it a million times two weeks ago, I almost stopped using it. But nevertheless, I persist, which I believe I believe is a famous quote that I'm taking out of context and one yeah, so I had another episode on looper Jenny Smith came on. And she and I just went over what I thought of Luca. Here's the funny thing when it was over, I thought, Oh, I'm gonna hear back from a lot of angry loopers who are like, Oh, you, you know, don't understand or Let's all instead, all I got back was a lot of people going, yo man right on, like, that's exactly what happened. Oh geez. So my next goal was to have someone on who's doing it with success and has been doing it much longer than me. So that we can really just interview you about what it's like to use it, taking my experience out of it. So that's what I'm hoping to do today. Does that make no pressure at all? No, I mean, you're just gonna screw up the entire movement. If you get this wrong melody. That's all

Unknown Speaker 5:40
right. Like,

Scott Benner 5:42
your husband doesn't need that job, does he?

Unknown Speaker 5:45
We're fine.

Unknown Speaker 5:47
We don't need insurance or anything.

Scott Benner 5:49
Exactly. So let's get a little background on your first how many kids do you have? How many of them have diabetes? Who else has diabetes? What's the deal?

Unknown Speaker 5:57
We have three daughters. And our youngest, Hazel is the only one with diabetes. She's the only person we we knew no one with type one when she was diagnosed. It's not a family thing. totally out of the blue. kind of situation. And she was 18 months old when she was diagnosed. I was the person who diagnosed or our pediatrician kept brushing or brushing us off. And eventually, I just took her to urgent care and said, okay, pediatrician, we'll just do this urgent care thing. Um, and urgent care sent us to the ER. And while we're waiting for room in the ER, Matt started Googling, like type one things. Like we're both doing, like, we're both talking to family and like keeping people informed and all this kind of thing. But he started Googling and came across the we're not waiting movement, the like less than four hours into diagnosis. And so he was like, This is great. And I was like, I'm not in a place to hear this right now. Talk to me later.

Scott Benner 7:10
18 month old has diabetes, you found some well meaning idiots on the internet and you want us to hand their care over. I'm not really

Unknown Speaker 7:18
wasn't quite there yet. It was just, it was just here's something that gives me hope that this won't be as terrible as we thought. And so that got a back burner. And over the next couple of weeks while we were trying to figure out what we were doing. Yeah. And before we left the hospital, I asked the doctor for a CGM and a pump. And he was like, sure, what pump do you want? I was like, I don't know, you know more about these things than I do. And so we started out with an animus Ping. Um, that's what the, it was a teaching hospital and, and the fellows and the residents, they conferred quickly on the round and was like, probably the NSP? Yeah, yeah, enemas. And so about six weeks after diagnosis, because insurance is slow. We started her on both the Dexcom and the Animus. And once we kind of got settled into those, it took about a month. Um, Matt started reading more about the, the looping and the open APS, which they're two slightly different systems.

Unknown Speaker 8:33
And

Unknown Speaker 8:36
it, we had an HMO at the time. And I know a lot of people struggle with insurance, but it's so hard to get supplies sometimes. Like I was doing the primary, I had the primary role of like fighting with the insurance company and saying, Do you really need another prior authorization? kind of thing?

Scott Benner 8:58
You need me to send you another piece of paper that says she has diabetes? Because I've done this already? Yeah. Could you could we all just agree, you're trying to put me off for a couple of wait a couple of months, then you can send this stuff over without even

Unknown Speaker 9:10
Yeah. And so. So Matt started saying, I think we should do this looping thing, but we need to do, but it has to be an old Medtronic pump. And I was like, Okay, I'm spending all my energy getting the supplies that we need for this pump. If you get the pump and you figure out how to get the supplies for it, I'm on board,

Scott Benner 9:27
leave me out otherwise.

Unknown Speaker 9:30
But I can't handle trying to secure supplies for two different pumps from two different supply chains. And, and so he did, he posted a link on a post on Facebook with a cute picture of Hazel and said, Hey, anybody have old pumps that they're not using anymore, and we got two or three. One of them worked for looping with the old Medtronic pumps and so about six months after we We started her on the Animus Ping. We started looping.

Scott Benner 10:03
How long ago was this? Like? What year was it?

Unknown Speaker 10:06
It'll be two years next month.

Unknown Speaker 10:08
Wow. So we're,

Unknown Speaker 10:10
we're about, we're about to hit our loop. aversary.

Scott Benner 10:14
Okay, so so that your daughter Hazel's had diabetes for two years. And in that time, yeah, yeah. You've just sped completely through all of this process to the point where your husband now works that type of what did he do before? Please don't tell me he was like a butcher before? What did he do prior?

Unknown Speaker 10:31
No, no, he was an auto mechanic. Just kidding.

Unknown Speaker 10:35
Um, he was developing mobile apps for higher ed. Okay.

Scott Benner 10:42
Okay, so is he right now as best as you're allowed to say? Is he helping to refine the loop app for typo or what?

Unknown Speaker 10:50
He's a product designer? So he's not doing any of the technical stuff. He's doing the make it look pretty pretty and be usable?

Scott Benner 10:58
I gotcha. All right. Well, that's simple. That's more, it's not more important than how well it works. But, but it's it. But it's incredibly important. Because if it's not intuitive, then then people will be put off very quickly, and then maybe never come back to it. So

Unknown Speaker 11:11
that's exactly what we have way too many conversations about. So does this make sense to the user does this?

Scott Benner 11:19
So melody? Are you good at answering those questions, honestly? Or is the DIY loop from tide pool just going to be exactly the way you want it?

Unknown Speaker 11:29
Well, Matt is not the only product designer, so he's one of a team.

Scott Benner 11:33
They have wives, too. I think he right now, there are four ladies who have children with Type One Diabetes, who are gonna be different, not just joking, but

Unknown Speaker 11:41
well, and some of them have husbands.

Scott Benner 11:44
Or vice versa. Of course, I'm a sexist, I didn't understand. Trying to get through the conversation quickly, but I appreciate that. No, no, I'm okay. But good.

Unknown Speaker 11:52
And, um, they The cool thing about tide pool is almost everyone who's working on this project has either has type one themselves, or is the parent or married to someone with type one. So it's very much I'm close to everyone working on the project, a personal connection? Yeah. Okay. So all right. Let's dig in. So so let's assume I'm going to make some assumptions here, that mat set the loop up originally, like you weren't digging around in the code. And he did that. That's our division of labor. He did all of the build, and technical support. And I'm the one who generally does setting changes and such.

Scott Benner 12:33
So let's go back in time to when you strapped it on the first time. What What was your Do you remember your initial experiences and what the first roadblocks were and how you got over them?

Unknown Speaker 12:44
Oh, I remember, we started out in open loop. Which means that, excuse me, we weren't letting the system make any, any bazel change decisions. It was running just her schedule. bazel. And we were both listening through the phone though. Um, and we were trying, we actually we ran it for a day without it connected to her. I don't remember how we got the CGM data, but like ran it for a day watching what it would do just with the pump, tubing hanging off the end of the couch.

Scott Benner 13:19
That's interesting. So So were you genuinely afraid at that point to just hook it to your kid and be like, Oh, I hope this works.

Unknown Speaker 13:26
I don't think we were afraid. I think we were cautious because she had just turned two. And she was 25 pounds. And this is a DIY thing. Right. And so I think being cautious is warranted.

Scott Benner 13:42
100% Listen, you you you got a you got a used insulin pump off the internet that downloaded some code from some nice people. And I think I think it would have been reasonable if you would have looked into a pig first. But I get what you're saying.

Unknown Speaker 13:54
pata pigs and maybe our older daughters were not willing to be guinea pigs

Scott Benner 13:59
for money.

Unknown Speaker 14:02
Although one of them probably would have done it for LEGO sets. But we didn't go there.

Scott Benner 14:06
Well, that's really, first of all, that's smart. So you basically just watched how this thing administered. And so just to make sure it worked.

Unknown Speaker 14:13
Yeah, and just to see if we can understand the decisions it was making, if there was going to be like any glaringly obvious things that we needed to change in the settings or things like that. Um, and then I remember, we put it on her and the Medtronic pump use the same infusion set as the Animus. So it was really easy to just switch it over. We put it on her and we were running in an open loop. And we went to do pony rides that day, we were watching this open loop and like pushing the button every five minutes because it will give you a base of recommendation and you can push this button say yes, I agree with that. And I got tired of pushing the button and I was like, Man Can we just close the loop is it makes sense what it's doing? And he was like, are you sure we're ready to do that? And so like that this was your idea.

Scott Benner 15:07
You said, you're not sure.

Unknown Speaker 15:11
If he was going with the cautious approach, which I appreciate, and

Scott Benner 15:14
he's being a guy, I do this stuff to my wife all the time, I push us to the brink of like something that I'm like, are you sure we should be doing this? She's like you said to? Yeah, that I see what you say he's trying to take away anyway, go ahead. I know.

Unknown Speaker 15:29
Eventually, it was, she had just gone to bed. And her blood glucose was pretty stable. And we decided to close the loop. Because closing the loop meant it would automatically suspend Basal if she started to go low. And I remember very clearly, we had nightscout setup, which is another monitoring to third party monitoring. app. Yeah. So we had that set up. And we literally sat on our bed and watched the night Scout, every five minutes, like her bazel would slightly change, or, and there were tears involved, because we're like, this system is doing all the work that we've been doing for the last six months, which isn't as long as some people have been doing all this work, I realize, but it was just this gratitude and happiness that there was finally something that was helping us keep our kids safer.

Scott Benner 16:24
Can you looking back now Do you know how many people approximately were using it when you started using it?

Unknown Speaker 16:30
Um, I think it was less than 1000. I

Unknown Speaker 16:37
remember, I have the number 400 in my head. And I don't know if it was 1400 or 400. ish.

Scott Benner 16:43
Yeah. Well, one way or the other, not a lot of people. And these aren't even people you can quantify are using it. Right? They're just they had downloaded the bottle. Right? Right. Right. So first of all, you're really great parents. And I'm not joking. I'm not joking, you should be lauded. It's really amazing when I put the loop on art, and she said, Is this thing going to kill me? And I? I responded? Probably not. So then she looked at me like, Are you serious? I'm like, it'll be fine. And then we walked away from each other. So

Unknown Speaker 17:15
the risk aren't the risk are not inherently in the loop system, the risk are in diabetes, right? If something's going to kill them, it's going to be diabetes, right?

Scott Benner 17:23
Because the loop does not say the loop doesn't go, Oh, I'm gonna give you 10 more units of insulin. It's you can you can make your settings so that stuff like that can't happen. And, and I was mostly joking with her. There was part of me it was like, I mean, I don't know maybe, but it doesn't seem like just a lot of people using it. They haven't died. Let's give it a try. Which I think is the pioneering spirit if you ask me. But she laughed and and we went along our way. And and it was terrific. How soon into the process. Did you first want to quit looping? Or was your experience before looping so much worse than looping? And not that looping is bad? I'm just trying to set up an idea in your head. Because let me give you my thought. We were doing incredibly well without looping. My daughter's a one c 5226245 years. no appreciable lows, no highs, anything over 140 was a little unheard of in our house, and eating whatever she wanted. Yeah, then I go to looping. And I'm gonna be honest with you. It's still not that good. In the loop still can't do what I was doing prior. Now. It does do things that I couldn't do. Here's one of them. It you alluded to it a second ago. It can do things while I'm sleeping. And I can't so last night. Perfect example. didn't feel well. When I was going to sleep. I was like, Huh, little tickle in my throat. Gonna really need some sleep tonight. Right? I don't want to get sick. Arden's blood sugar was a little low. This is around 11 o'clock. She's up studying really late. we bumped her blood sugar back up. I closed my eyes never thought of it. And she woke up this morning. She was 106 Beautiful. That is what the loop does that I can't do it can it can it can make decisions in the wee hours of the morning without dropping dead. I can't I can't do that.

Unknown Speaker 19:07
We call it our robot nanny.

Scott Benner 19:09
Yeah, yeah. It's fantastic. So So every time I hit a roadblock about loop, I just think I can figure this out. And and I'm doing something and I hope people don't think of it as hard headed. It really is about me and how I learned and about the podcast too, because I want to be able to explain loop to people in the future. And these algorithms in general, I do not go to other people to ask about the loop. I help I let people help me set it up. And since then, I do not ask anyone's help I look at what that thing does. And I try to imagine how to get the result I want and I'll give you an example. Right now. I'm doing what I consider to be an extended bolus with loop right so if Arden's meal is 70 carbs out, tell it I don't know 30 carbs at a two hour absorption rate, and then 30 carbs at a three hour absorption rate and 10 carbs at a four hour absorption. Right? And that way I trick it into leaving the bazelon. Right, I'm so thrilled with myself when I have no idea.

Unknown Speaker 20:18
I think that we came into it a little bit differently because we didn't have a really long traditional pump therapy experience. And, and so, instead of learning all the tricks on a regular pump, we were learning them in loop. And so I think that changed our experience. I don't think I ever thought about quitting. And when, when the Omnipod caught code was released, we switched Hazel to Omni pod. Um, that was May I think,

Scott Benner 21:00
you just recently that's got to be you. And I have probably been doing it about the same amount of time. Is it on Wi Fi?

Unknown Speaker 21:05
Yeah. And the Omni pod Kenya's going into different angle than the steel ones we were using. And it was a really hard transition. And I don't think I ever felt like quitting. But I felt like a failure a lot. I was like, Why can I not get this right?

Scott Benner 21:25
And how right was it going for you prior to that, like so, if I might, if I may, and if you're willing to. I saw I shared with you. We didn't see anything over 140 frequently I never Arden's blood sugar never languishes in the 160s or the 170s prior to loot, but now it does. Right, right. And yesterday, she had a big after school snack that we totally missed on and it might have taken us four hours to get her blood sugar breaking come Wow. Right so and I'm talking about going outside like opening the loop up injecting insulin like doing like doing all of this stuff. And when I finally broke that's why she was a little low before bed because yeah, we had to put so much into make it go like, I don't those things did not happen to me before. But so what what do you Well, first of all, I guess the question is, is your is your child? Is she eating like a normal? Not like reasonably carb meals? Like it's not a little existence? That's

Unknown Speaker 22:25
her favorite meal of spaghetti and meatballs?

Scott Benner 22:27
Not low carb. Okay, then, and, and what goal? What's your goal for her blood sugar range?

Unknown Speaker 22:34
Um, my goal is for it not to affect how she feels.

Scott Benner 22:39
Okay, so what number do you attach to that idea?

Unknown Speaker 22:42
Um, bought the range I have set is in between 70 and 140. And because she's she's four now, and she commonly doesn't let us Pre-Bolus Okay, because she's four and impatient. We do see spikes when she first starts to eat regularly, depending on what it is and how we like, for example, one day we went to the playground and I packed a lunch for us thinking that we she would play for a while and then we would eat and I would just Bolus or a few minutes before it went out. We were going to eat. Um, but she had other ideas. We got to the playground, and she pulled out a container of grapes and said I'm ready for this now. And it was great. And

Scott Benner 23:32
look over there is that Elvis? Elvis Presley, Peppa Pig would be a little bit more that would get her more than they think probably. Yeah, I mean, Elvis is supposed to be dead. You don't think she'd find that? shocking?

Unknown Speaker 23:45
Yeah, I don't know. I don't think she knows who Elvis is.

Scott Benner 23:51
So So what is that? So what happens then? Right. she's she's throwing you off your schedule. Here's the grapes, Mommy, I want these grapes. You're a nice person. I'm going to give you the grapes. What do you do? Do you do Bolus more than the carbs for the grapes? Or how do you control the spike then,

Unknown Speaker 24:04
um, I

Unknown Speaker 24:07
sometimes that sometimes I do the what they call a super bolus where you give it like, I knew that the grapes were 15 grams of carbs and I might enter like 18 and know that if she needed a little bit more I had a whole bag of food because I never go anywhere without without a whole bag of food.

Unknown Speaker 24:25
And

Unknown Speaker 24:27
and then we is when I talk a lot about um insulin and glucose being the tortoise and the hare in like the old fable. And so as she starts to eat the grapes and like I say, it's I'm giving you the insulin for these but you remember insolent is a tortoise and those grapes are a hair so try to eat them slowly so that they don't win the race. Yeah, because she's for how she learned to give you the finger yet or

Scott Benner 24:57
that not yet.

Unknown Speaker 25:00
He has to learn to roll her eyes because he has a 14 year old sister. But, um, she has not learned much profanity or gestures.

Scott Benner 25:12
Well, she'll get to school in a year or so. And that'll all just show me one terrible little kid. And that'll be the end of it. But no, no, but so does she listen, then does she does she slow walk the grapes when you tell her that?

Unknown Speaker 25:22
Sometimes, but usually not. But we're also at the playground that day. So she ate them and then started running and playing. And so I think she might have spiked up to maybe 180 and then come right back down. So it wasn't terrible.

Scott Benner 25:37
Gotcha. By now you know that dancing for diabetes has changed their name to touch by type one. Here's why they did it.

Unknown Speaker 25:44
For nearly two decades, dancing for diabetes has been spreading awareness about type one, raising funds to find a cure and inspiring those with Type One Diabetes to thrive. Our organizations incredible growth over the last 10 years has pushed us to challenge ourselves and reflect on how we can impact more people to better identify with our community. To properly explain who we are and increase our reach. We are rebranding and becoming touch by type one. rebranding will allow us to continue all of our career programs, as well as expanding grows, then we can reach more people and change more lives. We are ecstatic for this new journey for rediscovering who we are and what we can accomplish for our global community. Together, we enter our 20th year as who we've always been, and who will continue to be touched by type one, check us out a touched by type one.org,

Scott Benner 26:44
check out touched by type one.org. Now type it into your browser, use the links at Juicebox Podcast comm or look right there. In your podcast player. There's show notes. There's a link. All right back to melody. And this thing is just going to start going I am gonna like lose my mind at some point. While I'm talking to melody. Here's a good time to tell you, I found this conversation that I had with melody, incredibly therapeutic. And I have an aha moment. At the end, I know this one's a lot longer than most of them. But this episode ended up being like a therapy conversation for me about looping. So you're really listening to me, kind of hammering my way through it. melody is very generous with how she uh, let's say puts up with me. Alright, let's get back to it. spiked to 180 came back down how long between giving her the first insulin and back down?

Unknown Speaker 27:47
I'm less than an hour, less than an hour. Okay. Yeah, so it's like,

Unknown Speaker 27:53
if she influenced us in this right, then a lot of times, she doesn't spend too high. If she's like, she doesn't spend too high. But that's if the insulin dosing is right. And being a tiny person, getting that right is difficult. So I also learned not to be a perfectionist with a toddler with diabetes, because it was making me crazy.

Unknown Speaker 28:21
And

Unknown Speaker 28:24
the, we have fairly flatlines at night. Because she's not eating, she's not running around. growth hormones always mess that up. And that she sold her other hormones will mess that up too. But, um, but for the most part we have good night. And then in the day, she's she's in range around 60 to 80% of the time most days. And, and on the 60% there's usually something going on we watch for patterns, and then we figure out what it is correct and move on. Yeah.

Scott Benner 29:00
Well, first of all, I agree with you. I am not despite I guess the podcasts that I do. I am not a person who gets upset if a blood sugars not in a flatline and it's 85 I don't feel that way. And I don't I don't try for that. Also in our house when my wife says this is making me crazy, one of a stop one of a stop, sir. And we qualify and go crazier.

But but but interestingly, I also think you're in it. You're I mean, you're obviously I mean she's four, right, four years old, right? So, and it's great that you see it too, because I do also see people online who have pre pubescent kids were like, look at these lines. They go on for days and I'm like, yeah, there's no real hormones like you know, like there's, they have variables but they don't even know yet that the variables that are going to hit them when their kids get older, or the ones that adults have to put up with. You know what I mean? Like they're, you don't realize your kids pretty much an amoeba still Just sort of just floating through life going, Oh, this is great grapes swings. This lady comes with me. You know, that's sort of the deal, right? I don't mind that, like if Arden's blood sugar. If Arden's lunch today would have popped the 140 and come back, I wouldn't have thought anything of it. But here's what happened with Arden's long shot. And it's a bit of a blend of yesterday and today. So yesterday, with a very similar lunch, we had a little spike that happened, and it kind of leveled off around 150. And it came back. So later I was like, Oh, my God loop. We know what we're doing great. Yay. Then I am pack your lunch bag later, the half a sandwich I sent with her she didn't touch. So so 30 of the carbs of her meal she didn't need and it's still missed. So now I'm thinking, Oh, god, what if I would have like, What if she would have eaten that sandwich? Right? Yeah. So today, I when we text about her lunch, she's like, hey, it's lunchtime. I'm going to Pre-Bolus down on the cool. Are you hungry? And she goes, not really. And I was like, Ah, okay, so then we did a slightly smaller bolus. So instead, I think we did something like ended up being about eight and a half units, which I think it was like 30 carbs at two hours and 30 carbs at three hours, something like that, right. And her blood sugar was 106. Wow. Oh, starting out. Starting out. Starting out at 106. We put in this insulin, probably 15 or 20 minutes later, she's eating lunch. And for the next half an hour, 45 minutes, her blood sugar is just it's just bopping along, like 103 95. And we're winners. And then. And then suddenly, it just went 128 diagonal up. And there's a bend in the Dexcom line. Anybody listen to podcasts knows what that band looks like, this is me, I type right into the text message. It's trying to run. And so that's that's our code, right? Like it's trying to run. She says, What should I do? And I'm like, open the loop and Bolus three and a half minutes. And then and then I was like, Did you eat everything she was? Yeah, you know, I ended up being much hungrier than I thought it was. That's great. So So the three and a half probably still wasn't enough. But I was just like, open the loop Bolus three and a half units. That's my new code for smack in the face. And so she's 128 diagonal up after almost an hour of the insulin being in and I am just like, there's a, I see it now. And I'm like, I now know what to do. If I over if I can bolus enough insulin to crush the number and keep it and bring it back. Now I'm learning how to stare at that like not stare. But I know when the graph tells me to turn the loop back on, like yeah, right so that I can catch a low later because I'm putting way too much insulated in this moment. And then if I put the loop back on a little cuddalore away that is something I've taught myself through all this though, keep in mind please while your daughter's that delightful small child buying around with some grapes aren't had half of a peanut butter and jelly sandwich, like those little Oreo flats, that you can spread the cream on yourself a small grab bag of potato chips, a large bag of grapes, ask me how many grapes I have no idea because I would never count a grape and a yogurt.

Unknown Speaker 33:09
So we don't want to count every grape that goes into your teenage daughter's lunch. I

Scott Benner 33:13
have never counted food in my life. That's why this podcast mainly exists. I didn't want to count carbs, it's like I have to figure out how to do this without counting carbs, because I'm not going to do that. And they end up killing her. So what would have happened prior to lube is that I would have made this kind of crazy, bigger bolus, that I also would have included in a large Temp Basal increase along with and then that way when I could tell on the line where we were and and take away the Temp Basal increase if it was necessary, leave it on if it was and I sort of create these two different blankets of insolent with the Bolus bazel where a loop makes me want to curse, spit and and burn something to the ground is it I get this bolus, right? It's perfect. And the loop goes, Hey, you know what we should do here? Let's shut off the bazel. And

Unknown Speaker 34:05
it's all the information you're feeding into the system. And so

Unknown Speaker 34:08
Luke said too much.

Unknown Speaker 34:11
We've only had the information you give it and so Lupe said she's had enough insulin for this for the amount of carbs. So we're going to shut off the insulin because we don't want her to go low. But Luke doesn't actually think because it's a machine. It's an algorithm.

Unknown Speaker 34:29
And, and there is no

Unknown Speaker 34:32
machine learning involved in this. Just clarifying that.

Scott Benner 34:34
Yep, I bring sure to bring that up every time like because you know, people think this thing's gonna see it three times and fix it. It's Yeah, it's not Skynet. So yeah. Oh, God, please. Oh,

Unknown Speaker 34:46
yeah, you know that she needed more insulin. You saw from her graph that she needed more insulin. What I generally do when I see that the insulin that I gave Hazel for male is not enough. I'll go back and retro Add carbs to the meal. Yeah. And then it will continue to it will give more insulin and then add bazel. And

Scott Benner 35:11
so when you do that it gives more insulin but in the form of bazel.

Unknown Speaker 35:15
Um, a lot of times if you enter more carbs into a previous meal, then it'll recommend the Bolus to

Scott Benner 35:21
Yes. Now here's where. And please, I always want to be careful whenever I'm talking about loot because I genuinely mean what I'm about to say. It's amazing. Any any person who put any effort into getting it to this point in the world is amazing. I am not disparaging it in any way whatsoever. But here's where it sucks, because I hear what you're saying. Because like, it's like, oh, pending insulin, but like you got to go into a screen to see that it's not like it pops up and it goes yellow man bolus. It's not It's not like that, right? You have to go figure it out and

Unknown Speaker 35:52
you add carbs. Like if you add carbs retroactively, even then it will pop up. recommendable.

Scott Benner 35:58
It doesn't do that for me, like I know It must be because and as I'm sitting here talking about it with you Arden's some of ardens meals are incredibly carb heavy, right? So even when you're like, Okay, well, let's call it 20 more, I still, it's like, dude, that's not enough for me. And I think I need to be telling it more. But what do I want to say here about that? I it, huh? I'm lost a little bit because this is what this is what Luke does to me. It makes me it makes me lose my thoughts. I want to be able to tell it more. And I do and a lot of times I'll bolus pending insulin because that's a trick that Jenny Smith taught me. She's like, if it's, if it's saying pending insulin, she's like, just Bolus it. And I was like, okay, because it can only steal it away with bazel later that I love. But it's the it's the heavier carb stuff. What I wanted to say was that everything I do for a meal that's not particularly carb heavy, you know, like the like, the night before Arden had a big like sort of just house salad that I made for her. And she ate I think a cheeseburger with it and maybe a couple of other things. She's very interesting the way she she has a an interesting collection of food when she eats us like

Unknown Speaker 37:11
I have a 14 year old

Scott Benner 37:13
you know what I'm saying? Like I should have with this burger a salad I'm like, Yeah, absolutely. Here you go. Why not? And no lie the loop handle that meal perfectly. Now I think had I had it gotten more karbi then it that's when it just I don't know. Like it can't. The bazel can't get ahead of it enough. It tries and and I've and you know I've tried. I know that people warn against like not having your max bazel up too high because you don't want them to be making too many decisions. The bezel? I'm telling you that away from food right now we have the loop working. It's not It's not like my settings are way off. It is a bit of a pain because as soon as she becomes premenstrual then the settings aren't right. And then you have to go in and kind of bump sensitivity.

Unknown Speaker 38:02
I know people who use overrides for periods and pre periods.

Scott Benner 38:07
I have the override setup and I have to tell you, I can't make positive overrides help me I can make negative overrides helped me but not positive. I don't know why I'm still figuring it all out. It's a freeze. Really. It's like I'm in a snowstorm without glasses on I just I look around. I'm like so much swirling whiteness. I don't know which way to walk.

Unknown Speaker 38:28
So many Dexcom dot.

Scott Benner 38:30
Yeah, like what's happening. So So can we pick through the settings a little bit? I would love. I would love your opinion, because I don't know. So when variables kick up, and let's just say that insulin needs are more do I? Do I need to move the bazel the Max bazel the bazel rate and the insulin sensitivity? Do they all need to become more powerful?

Unknown Speaker 38:55
Um, it depends on why like, if you're saying she's great without food, then your Basal is good. Okay. Then

Unknown Speaker 39:07
if she's eating and steady for an hour, and then going up, she needs more insulin for that meal.

Scott Benner 39:14
Yeah, right, right. Right. But what setting is that

Unknown Speaker 39:19
high ratio.

Scott Benner 39:21
That can't possibly be right though, because Arden's carb ratio is like six carbs to a unit. If I make her carb ratio any higher, she's gonna like that won't that that doesn't make any sense to me, because we're

Unknown Speaker 39:31
getting on what what the food is like, there's Hazel, and I go to Starbucks once a week, and we have breakfast there and there's the sandwich that she loves. And it's taken me about the amount of time that we've been going to Starbucks, like two years to figure out how to dose the sandwich and on the menu or on the nutritional information that says it's 28 grams of carbs in this bacon cheese

Unknown Speaker 40:01
egg sandwich thing. Um, I've learned that I have to almost double that,

Scott Benner 40:07
probably because of the bacon and the cheese.

Unknown Speaker 40:09
And, and because it's processed, like, the more processed the food is, the more infinite takes, I don't understand why there may be like some food chemist or something, you can help me figure that out. But like the carb count for fruit is going to always be like, I can give Hazel 50 grams of strawberries, and that's four grams of 50 grams of strawberries and weight, which is four grams of carbs, and give her the infinite loop says it will be fine. I can give her the same amount of like

Unknown Speaker 40:46
something that's been processed, like I'm assuming something. And, and she needs more insulin, yeah. Then the carb count says,

Scott Benner 40:55
I'm assuming you probably have imagined this too, but that your body just can't break it down as well, when it's been processed as it can when it's just an organic sort of singular food that yeah, it's in there. And so it stays in it. Yeah, probably stays in their stomach longer takes longer to break down, gives off its carbs slower over a longer period of time plus the fat and the from the bacon in the morning. I'll spread it out. But that's cool. So you figured it out. But now, but do you say to 28 grams, and you did say 28 grams for 28 grams sandwich? You've doubled it to 56? Don't I paused in there for you to be impressed by math. But you'd have 256 But that can't be all right. You don't just put 56 in and let her eat you spread it out somehow did did you change

Unknown Speaker 41:38
I put it over four hours generally. Like in the him. I pushed the hamburger icon. Okay. And I commonly, I commonly it'll recommend, so Hazel's on diluted and fluentu, which is another fun factor. Um, so the way I think of units, when I say that, I give her five units for this. It's not it would four per units is one regular unit. So

Scott Benner 42:04
right. So if you gave her five real units of that insulin, she would just follow like that. Yeah, gotcha. So how long? How long have you been doing it? obviously been doing that the whole time. But have you? Like, are you gonna Is there a moment when you'll be able to get away from it or waiting for some,

Unknown Speaker 42:21
I hate diluting the insulin, we do it ourselves. And it's a tedious process that if you get wrong, it has major consequences. And so I would love to stop. But, um, we just get better control with the diluted insulin because you can give smaller doses basically.

Scott Benner 42:41
Right? Good for you. I think whatever works is, is the right thing.

Unknown Speaker 42:45
And it's standard is the center of care in our clinic. Like I'm all small children start out on diluted influence. And I don't know why it's not everywhere, but it's not.

Scott Benner 42:56
No, yeah, I don't meet many people at all who use it, honestly. And I talk to a lot of people and, and so it's not something that commonly comes up actually, I'm gonna say to harden right now, to close the loop. See how long it takes me to see that? Wow. Okay, so all right. So you're so how do you think about it? Like, I'm gonna break down some of these settings and tell me how your brain thinks about them. Okay, let's go with let's start with I think insulin sensitivity. I'll start with where do you see what is that setting, say to you? Let's see what happens when I type in the phrase Contour. Next one.com into my browser. Now? I don't think it should be any surprise. I'm on the webpage for the Contour. Next One blood glucose meter, the same exact blood glucose meter who's sponsoring this episode? Are you surprised you probably shouldn't be top of the page, yellow button to get a free Contour. Next One meter. I click on it. It does explain that not everybody's eligible. But it's pretty easy to find out who is email address, your name, birthdate, phone number, address, city state. I mean, it's pretty much that do you have diabetes? What type of diabetes do you have? It's that kind of Zynga. You don't mean and then you click Finish. Boom. Come on. You don't want to go find out if you can get a free Contour. Next One blood glucose meter. You don't want to know if you can have the blood glucose meter that Arden is using that I have been telling you about for a while now that Arden has been using for quite some time. That is in fact, the most accurate blood glucose meter I have ever used with my daughter. Ever. Not only that, the thing is, um, it's handy. You know what I mean? Not too big, not too small. Got a little you get that little light on it. There you click click at night. You can see where you're shooting. And of course, second tried test trips. So if you hit it once, don't get it right, you go back into that blood drop one more time without wasting a test trip. All these are great reasons for you to go to Contour Next one.com honestly, it's even a better reason for you to click on my link in the show notes or Juicebox podcast.com. Cuz that way they'll know you came from the podcast, check it out. I think insulin sensitivity I'll start with where do you see what does that setting say to you?

Unknown Speaker 45:30
That's the golf score. Because like golf scores are, the lower it is, the better it is or stronger. So I always think of it in terms of golf.

Scott Benner 45:43
Strange. So the lower the number, the lower the number is, the more powerful it is.

Unknown Speaker 45:47
Right? And so, I SF, if you're seeing a lot of roller coastering when there's like your, your Dexcom line looks like I'm doing the hand motion, but you can't see that it looks like a sharp waves or peaks, and then you probably need to change your ISF. Um, the ISF is tricky because if it's too strong, like too low of a number, you can get the if it's too strong of a number, you generally get the ups and downs. If it's too weak of a number, then loop has a hard time bringing it back down. But a lot of people compensate for a weak ISF with something else, like higher bezels.

Scott Benner 46:38
So sometimes people make their their ISF too weak, but they jacked their bazel up, which is not the really the correct way for the algorithm to be doing what it's trying to do. What's the telltale of that? Do you see the bezels open and close a lot when you have that wrong?

Unknown Speaker 46:51
Um,

Unknown Speaker 46:56
the telltale would be if

Unknown Speaker 47:00
if so,

Unknown Speaker 47:03
if you have a two week ISF, I'm gonna get this wrong and people are gonna yell at me. No one's impressed. They can't find you. They don't know. You're fine. Don't worry, you told them where my husband works.

Scott Benner 47:14
Oh, please, they figured that out. By the way. In the time you've been talking, I've now written closed loop or you will die. Hey, close the loop. And I finally got an Okay, so we're all good. Now.

Unknown Speaker 47:24
I love waiting for teams to text back. My favorite thing

Scott Benner 47:26
fairness, she's in class but, and she got back to me within a couple of minutes. It's just I like so I'm looking at nightscout off to the side. While you and I are talking. Right? I saw the flatten out. I saw the drop. And then I saw the the arrows stay the same, but the number change and that's when I was like, ooh, close the loop. Because it's gonna start falling. And then she jumped like from like, she jumped like 10 points in five minutes. I was like, hey, just let's close the loop now. Only because she's not in danger. I just don't want her to drink a juice. I'm trying to keep her low later. So anyway, alright, so don't say anything you're not comfortable with. I'm really looking for like your, like what do you do when you see those scenarios?

Unknown Speaker 48:09
So when I see the up in the quick up and down um, I haven't changed my stuff in a while, but I'm making the ISF a bigger number. makes it less roller coaster.

Scott Benner 48:24
Okay, so a weaker sensitivity factor or a higher number and God bless whoever said like that. And so what takes away so if your roller coaster and just those gentle kind of like ups and downs and ups and downs, that's because probably your ISF is too powerful. And, and and you're and so it's pushing you down, and then the basal is cutting back and then it's popping back up, and then it pushes back down again. Okay, see, that's, that's really valuable. I appreciate that. And what about Max bazel? So where do you see it set like are ardens in bazel and sounds really interesting on loop. So she's like 2.6 during waking hours, 2.6 units an hour during waking hours. For perspective, even though it doesn't matter. Anybody she's 15 she weighs about 130 pounds, she's like five, seven? overnight, she's 1.1 or 1.2. But her bazel is very that much overnight to being awake but her sensitivity factor overnight isn't that much different were weaker than it is during the day and I don't know off the top my head it's only it's a few points off. Yeah, and and when she sleeps in and everything kicks in for like waking hours. That's when I I have a lot of luck with an override I do a minus 30% override and that keeps her stable. So my assumption is is that her nighttime ISF is about 30% lower than her daytime, but that also, but but that doesn't but 30. But but it's more than 50% lower during the night for bazel than it is during the day. So even that 30% doesn't work. I just somehow I've randomly. I've literally lucked into an override that lets her sleep in.

Unknown Speaker 50:17
Oh, that's the first thing in the morning. It's one of the hardest times for me because

Unknown Speaker 50:24
Hazel doesn't go to school yet. And she doesn't always wake up at the same time. And so

Unknown Speaker 50:33
like, as soon as she wakes up her blood glucose is going to start to rise. But not until the minute she wakes up. And so getting the basal set right there is so hard. I'm hoping that will be one thing that's easier when she starts school and in a very routinized

Scott Benner 50:54
I what we do on school days, Arden wakes up. She's usually like this morning, she was one of six but a lot of times she's around 85 or 90 when she wakes up. And I could see if it wasn't for loop. I could just bolus right then I would without compunction bullets a year and a half of insulin when she woke up, just blind Bolus, I would do it. But I can't because if I do that in the loop takes away all the Basal. Like you messed up, buddy. And I'm here. And I don't want to and I don't want to like I try not to like hard like fake carb lie because that messes things up too, right? So I have to wait for a blood sugar to start drifting off. Then when she gets the 128 depending on pops on. It's like, yo, you should be bolusing. And I always want to look at it. Yeah, I know. And then. And so she does that usually on the ride to school. And it'll catch her around 135 or so and bring her back.

Unknown Speaker 51:46
So if she used, you know that she needs like a unit unit a half somewhere like that, something like that.

Scott Benner 51:52
Is that what you said? Yes, absolutely. So should I jacker bazel for an hour right before she wakes up? Probably Yeah, right. Except I always like I'm not killing your kid you make. I'm not giving clinical advice here. Melody, listen at the beginning of the podcast in a very deep voice. I will remind everybody that you and I are not giving anybody advice. I mean, honestly, they're hearing us talk there's no way they would take advice from us anyway. So you were outsmarted by a kid with grapes earlier this Congress.

Unknown Speaker 52:25
It's one of my kids regularly.

Scott Benner 52:29
So So okay, so I think about that, but then I get to the idea of well, then Saturday I'll come and then that's going to be way too much. And what if I don't wake up that early? I'll tell you, I said this with Jenny the other day, on one of the episodes and I'll say it with you. Pump companies or if you know tide pools listening or whoever. You have to give people weekday and weekend. Can Trump Yeah, don't make me remember to get up at six in the morning to stop something that works Monday through Friday.

Unknown Speaker 52:59
Um, what I've heard other people doing is Friday night before they go to bed. They just changed the time on the bazel

Scott Benner 53:07
hundred percent that's still bullish. Yeah, I don't want to have to do that. Like, like, this is such a simple thing. There should be I should be able to set something up for weekdays that started, you know, Sunday night at midnight or something like that. And that, you know, and

Unknown Speaker 53:22
I should be able to read the alarm on the clock that set and then just start kicking the bazel in like an hour prior to that when the alarm goes off. That's

Scott Benner 53:30
genius. I know. Yeah. They really,

Unknown Speaker 53:33
I should be the one designing these things.

Scott Benner 53:35
Yeah. What's what this guy did that he was just making Apps for Education stuff. He doesn't know what he's doing. How did he get this job? Just kidding. I'm sure he knows what he said typo was obviously, you know, doing that stuff. And you and I are having you're having an amazing idea right now, which obviously we can't really implement. But in a perfect world. Imagine that. Imagine if the app said Oh, her alarm set for seven today we should start pushing her but to her bazel insulin up at 630 or six o'clock. I mean, obviously there's that's fraught with pitfalls, but it's in a perfect world scenario. What a genius idea.

Unknown Speaker 54:12
Your phone already has all this information.

Scott Benner 54:14
It knows when you start moving. It knows when you start breaking REM sleep and everything. And you know, it's it definitely knows what you're doing on Facebook.

Unknown Speaker 54:22
That's the whole the whole concept behind the we're not waiting movement. They're like they they were like we have the CGM. We have this pump. Why can't they talk to each other? Yeah. So now we have this phone. And we have and it has all this personal information about it. Why can't it inform the decisions of our insulin delivery?

Scott Benner 54:40
Even a little bit? Yeah, just even just even cuz it's funny as you say that even if ardens bazel rate would move up by 30% an hour before she woke up in the morning. That would be enough to stop that. That initial rise that life rise. You know what I mean? When you open your eyes, you're like I'm awake I through school and everything starts hitting you and you're rushing around and irritated that you're feel tired and it starts pushing your blood sugar up? And yeah, I mean, listen, Something's got to give because, you know, parents, parents are the ones who do it. Normally, I know so many people who set an alarm and get up an hour before their kids to get their kids blood sugar's ready for when they wake up in the morning. And then poor adults don't have that luxury of their mom still sitting behind, you know, at the foot of their bed, trying to wake them up helping them with their health. And so they're putting a completely different problem. So when it's a kid, even if you outsmart it, and there are a million ways to outsmart this stuff, those ways still entail effort and time. And I know it's hard to think of in the moment mount, you know, melody, but that effort that you and I are and other people are putting into things. It beats you up over time, you know what I mean? Like, I am not the same fresh faced, young man, I was before my daughter got diabetes, and there is part of me who wonders what I would look like if diabetes didn't exist, you know, they mean, like, would I go for a walk once in a while? Like, what kind of energy and and you know, like, what would life be without that stress? And that extra stuff to do? And what don't you get accomplished in your life? Because you're thinking about it? And you know, and how can these things help you with that? I listen, I like to, you know, I can play in while I'm talking. That's part of my, my charm. But I love loop. And I think it's stunning. I can't wait for tide pool to get their thing through the FDA. I can't wait for, you know, horizon to come out from Omnipod. I can't wait to see it all. You know, I'm super excited.

Unknown Speaker 56:33
So when, when we were looking at loop for Hazel way, two years ago, there were no other systems on the market. I think the 630 g was available for adults at that time, maybe. But there was nothing. I talked to the Medtronic people in detail. And they're like, there is no way we're going to put a two year old on our pump. At this point, it is not approved.

Unknown Speaker 56:58
Yeah. Yeah. Like, right, it's gonna happen. Our system that's not approved.

Unknown Speaker 57:05
But it's exciting that there's like, tandem and Omni pod and there's so many more that are coming out and and loop works well for us. Different things work for different people. And different things make more sense and in different lifestyles and such, right?

Scott Benner 57:26
Oh, absolutely. Yeah, you got to find what works for you. You can't just I mean, Arden uses a Piedra nobody uses a feature. it you know, as its own. It works so perfectly for her. You know, and so I didn't get to that we use no blog. Just go doctor gave us no log. I was like, yeah, sure, whatever. This is insulin. And then one day someone's like, you know, the problems you're describing. Have you ever considered trying a pager? And I was like, I don't even know what you're talking about? You know, and I tried it. I was like, Oh, this is way better for her. So and I know people have tried it, and it hasn't worked for them.

Unknown Speaker 58:01
Yeah, um, But to answer your question of, like, 10 minutes ago,

Unknown Speaker 58:07
we have our max bazel set at three times what her?

Unknown Speaker 58:13
Normal, highest bazel is okay.

Scott Benner 58:17
And so what is your highest? bazel?

Unknown Speaker 58:20
Um, remember, she's on your 25 deleted in fun. Price. bazel I think is point eight.

Unknown Speaker 58:29
Which would be point two,

Scott Benner 58:33
if it's not, right. So

Unknown Speaker 58:36
her highest basal hurt the periods where she has the highest basal is right when she goes to sleep, and right when she wakes up.

Scott Benner 58:47
Okay, so if you have it because of the because delidded you have it at point eight. So so your max is?

Unknown Speaker 58:56
I think it was right around three, three. Okay. We,

Unknown Speaker 59:00
when when we first started Omni pod, we upped our bezels considerably because like, this isn't working. She needs more insulin with this system. And then I think part of it was the craziness of our summer. And then and so her Max bazel at one point, the her the highest bazel setting she had at one point, I think was one and that's when I moved it up to three and I just haven't lowered it again.

Scott Benner 59:28
Gotcha. And and by not and by not lowering it, lowering it It hasn't hasn't had bad effects on anything. So actually, your Mac your max bazel rate is significantly higher than three times higher than her normal base. Right?

Unknown Speaker 59:41
Like half a unit.

Scott Benner 59:43
Okay, okay. Gotcha. Well, yeah, but it point to a half seems like a lot to me appointed.

Unknown Speaker 59:48
Yeah. But good, but it's diluted half unit,

Scott Benner 59:53
which is really more like hardly anything.

Unknown Speaker 59:56
Yeah, like 1.5 or something. I don't know. Nothing. Hard.

Scott Benner 1:00:00
Kidding, please. That's another reason why I have this podcast because I'm not I don't like the math, and why the loop makes me upset. Because it all it all seems like math.

Unknown Speaker 1:00:11
It is. And

Unknown Speaker 1:00:14
I love that. Diabetes has made me have a slightly different relationship with math than I did before. Like I remember shortly after she was diagnosed, I wanted to write a letter to my high school math teacher and say, and say, remember, when we all ask you when we would need this in life? Now I use it to keep my kid alive. So I guess thanks.

Scott Benner 1:00:36
Appreciate it. Really glad you understood everything. And you taught it to us so well. I still so you know the way I do it before loop. The way I would handle all this had no math in it whatsoever. It was all just vibe and feel and it works. So well. I mentioned it when I talked to Jenny about loop. But Arden said to me earnestly she's like, I don't understand why we're using this loop. You and I are so much better at this. And I was like No, I know. But we need to figure it out. And ironically her Awan sees not changing. You know, even though she's seeing higher blood sugars we're not seeing but that's because we're like purposefully like smashing them. I think if being honest, if I would not readdress spikes, I think Arden's agency would have gone from where it was, which I think was 5.5. When we started, I think it would be seven by now. Well, and now what I'm trying to say is, is that I also think that there are scads of human beings on the planet, who would be incredibly happy with a 781 say, and not just happy, but it would be an incredible improvement for their health.

Unknown Speaker 1:01:45
Yeah, I'm happy with the seven, like six months in. Yeah. And that sounded really condescending. Like, I remember being happy about a seven. Because it our doctor, our endo said with a condition we want her below 8.5. And so the seven was great. Yeah, you're like, I'm one

Scott Benner 1:02:03
and a half under the best, you know, yeah, I see that. I listened. And I don't think people take that as kind of I think people with a nine wish they had a seven I think people who were told eight and a half would be thrilled with a seven. And now you're lower than that. You think I remember a time when I was thrilled with seven? Don't you know? Yeah, I hear what you're saying. You're not hurt anybody's feelings story. People listen to the show are tough. They can take it, they listen to me. So they got a really thick skin. I don't know what we've done here. Naughty. I really don't like what I you know, what I really realized as we were talking. So if I may summarize or pull this together for a second, just to kind of make a bigger point. Your kid is little, and you're doing a terrific job Hurry, when C is great. Her variability is really amazing. All this stuff is going really well. And yet, when I said to you, hey, in this scenario, what would you do to that setting? You were still like, um, well, it right?

Unknown Speaker 1:03:01
I need a little bit more information than right. What we do, what I do is, I look at patterns. If she if she goes slow once at a certain time, then then it could be because I just feel wrong or because she was wearing her sparkly shoes. And she thinks that her sparkly shoes mean that she needs to run more or any other variable, but if she goes low in the same place two or three times, then I'm changing a setting. And so I look for patterns.

Scott Benner 1:03:34
And so the interesting thing to me is that you're charting a course right like you, you're thinking about loop and and your settings, like you're standing on the shore of New York, and you're trying to get to Europe. And so you're plotting and charting and making everything, like decisions ahead of time what I was doing before loop was I got in the boat, and I and I started rowing, okay, and then if there was a storm up front, I would just go around the storm. And then if a pirate ship came, I'd hide. And then like, you know, like I just went and I got over there. The same way you got over there. Like we're both standing in Europe now going, huh? Your Way worked and my way work. My way was more like fluid and kind of flexible and blue. Can't do that loop needs to know. settings it needs to understand. These are the numbers I'm working with. And those numbers need to be right. And if those numbers are wrong, it doesn't just stand up like Oh, no worries. We'll hide from the pirate ship. Now it does. Yeah, yeah.

Unknown Speaker 1:04:34
It's a system that needs the correct information to go forward. Whereas you're human and you're able to bob and

Scott Benner 1:04:42
weave. Yeah, yeah. So do you know anybody that closed loops at night and open loops all day?

Unknown Speaker 1:04:49
I'm sure there are people. I've heard of parents doing that with school. Some

Unknown Speaker 1:04:56
I don't know anyone particular who does that regularly.

Scott Benner 1:05:00
I'll tell you I, in my mind, that would be the best answer for us with the exception of the fact of that when you put loop, when you re close the loop after a day of it being open, it immediately looks and goes, Oh, you've used way more insulin than we need, and then shut your base forever. And it's just like you mother, then. So he, so everything I tried to trick it with.

Unknown Speaker 1:05:24
I'm hearing that live causes you to curse.

Scott Benner 1:05:27
I curse aside of loop. But a loop makes me want to curse more than than normal. It just because every time I feel like I have it outsmarted

Unknown Speaker 1:05:37
it, I'm wrong. Yeah. And I think that, that trying to outsmart it is is maybe counterintuitive. Where you're going wrong? Yeah, but because. But you have to figure out how to work with it. But you've been doing this other system for so long. Yeah. And working so well, that it's kind of like trying to learn to ride a unicycle after you've been riding a bicycle or something. I don't know if that's a bad analogy. But

Scott Benner 1:06:07
all analogies are fun. I think that what I would love to do is put you and that kid in a time machine and send you forward 10 years. And then let you live a week with loop and ask you these questions again. I feel like you'd be like, Oh my god, Scott. Right, huh? Yeah, because with hormones, you mean hormones, and big, bigger appetites? Like like that, like that kind of thing? Because right now, like, I mean, like, honestly, like in carbs, what's the biggest meal? She might eat?

Unknown Speaker 1:06:41
Um, we were at a pool party the other night, and there was pizza and corn on the cob and cookies. And it gave me a slight anxiety attack. And I think it was over 100 grams.

Unknown Speaker 1:06:54
Wow, how did that go? Um,

Unknown Speaker 1:06:59
it. So she ended up having a second cookie, because I wasn't familiar with the kind of pizza that was. Um, yeah. And so I ended up giving too much up front. And then she went low, and ate a second cookie, and then eventually stabilized and was okay through the night. But it was it was rough.

Scott Benner 1:07:22
Yeah. Can I add context? what's, what number is low in your mind?

Unknown Speaker 1:07:26
Um,

Unknown Speaker 1:07:29
well, we needed to drive home and I don't like to put her in the car if she's, if she's below 70. Okay, because I don't like to drive and try to, like, throw candy back at four year old,

Scott Benner 1:07:42
open your mouth stop moving.

Unknown Speaker 1:07:45
And we live in in the Los Angeles area. And so it's not just like, you can pull over on a side street. It's like, one time I was navigating a difficult like going from the five to the 210. I don't know, some numbers. And and I hear the Dexcom alarm. And I'm like, Why is she low? She shouldn't be low right now. And then I look back and she's asleep. And kids fall asleep in the car all the time. And I'm like, Is she asleep? Because she's low? Is she asleep? Because she's didn't take a nap today. And and then I'm like, trying to navigate this highway transition and yelling at her trying to make sure she she will wake up.

Scott Benner 1:08:26
By the way, anyone who's listening who is not imagining melody, whipping candy at her daughter's face trying to hit her open mouth is not allowed to listen anymore. Just shut off. You're not allowed to listen. Because you have to be picturing that right now. She's just got these like little gummy bears. And she loved them. What

Unknown Speaker 1:08:42
is it? dum dums are it's my candy of choice for the car because I can hold the stick and hand it back and mostly reach her

Scott Benner 1:08:50
cuz the lollipop makes it longer. Exactly. Oh my god. Now you all have to be considering this. Also, if none of you have ever driven in Los Angeles don't it's a terrible, awful. Yeah. But Oh, wow. You have painted a picture that I will live with for the rest of my life. Molly, thank you so much. It's you trying to negotiate five lanes of traffic

Unknown Speaker 1:09:11
and can't

Scott Benner 1:09:13
afford four year old in the face with a lollipop. It's great. Anyway, so she got lowered. And then yeah, how high did she end up at that picnic ever?

Unknown Speaker 1:09:27
Um, well, it was time to go and she was in the 60s and so I didn't want to get in the car again. She had a ton of insulin on board because of all the corn on the cob and the pizza. And the pizza was thicker crust than we usually eat and so I think it was hitting slower. So with another cookie, I got her up above 70 and we got home and I don't remember. I'm I think she probably went high later in the night. Then I went back and entered the grant. Like I didn't enter the cookie initially because I didn't want it. I didn't want if she went up high enough, I didn't want loot pushing her back down while we were in the car. And so I went back into the cookie, and got it all leveled out eventually. But it was, this was a birthday party. It was just a pool party in the summer

Scott Benner 1:10:20
party. Is it a good time? It was great. There was a party that was just like, we should have stayed home. I we could have splashed water on the kids, it would have been so much like, Look, guys enter the year. Yay, I go back in your room.

Unknown Speaker 1:10:33
birthday parties are the hardest, especially when there's a pool involved. And pizza. There's always pizza. There's always sweet things. And it's always things that are unfamiliar to me. And so, like, there's so many things. Like we go to blaze all the time, because there's one right beside our house. And I know how to do that pizza.

Scott Benner 1:10:56
blazes a pizza place because when you said California Blaze, I just thought that's where you guys go to smoke weed. Is that not right?

Unknown Speaker 1:11:02
That is legal here. But no.

Unknown Speaker 1:11:06
Blaze is a pizza place. It's like super thin crust. And so it's really easy. Yeah, and, um, but we haven't had enough experience with all the foods of the world for me to know how to dose everything. And even with bloop it's a learning experience worse

Scott Benner 1:11:22
not lesson it's all a learning, I'm not gonna lie to you, I get some meals so incredibly right? With loop that I'm just like, if she would just eat this all the time. I I'd be golden. You know, it's, and I'll tell you what messes me up more than anything right now. It's the, it's the bolusing process and loop. So you know, I told I told you earlier we did like 30 carbs to our start. So she does 30 carbs two hours then doesn't deliver anything. Right? And then bangs back in says 30 carbs, you know, three hours and then it it gives the it gives the suggestion for the entirety of 30 carbs, two hours and 30 carbs throughout? The problem is right in that moment. I want to be able to say to her, how much is it suggesting to you? But we don't have that kind of time. And we're texting, right? Think prior to that, I would say hey, I think we're going to use this much insulin, then I would know what goes in. And so I don't know how much is in her. Because had like today is an example. She would have said to me it once like eight and a half units. And I would have said that's not nearly enough. Right? We should use more. But I can't see that. And because of the way the process. Can you

Unknown Speaker 1:12:28
see it on nightscout when she enters it, like when the Bolus goes through?

Scott Benner 1:12:31
Yes. But it's it's there's a lag. Right, right. And then by the time it pops up, you're like, Alright, well, I here's what I do. I am that might not to the people listening, you might not believe this. I'm an incredibly optimistic person. I seriously Am I believe, and I trust and I really am a hopeful person. And so when I do it, I think well, these carbs are right. And this thing says it, I'm going to let it go and see what happens. And then when 45 minutes later, her blood sugar is like 96. I'm like, you know what? See, I'm being rewarded here for being optimistic and hopeful. And then her blood sugar shoots up and I'm like, why don't I trust that stupid. And so that's sort of my roller coaster ride for my own personal thing. But I really am. You know, when it's working so well for all these hours in a row and it gets a meal. Great. When the next meal comes up, you want to be able to say, All right, let me see what it does here. But I still have that unreasonable expectation in the back of my mind that it's going to fight with bazel. It just doesn't that like you said, the minute it thinks she's got the right amount of insulin for a meal, it takes the bazel completely away. Every time I look, I think if it would just leave that bazel then this would be okay. I've tried temp basals from nightscout.

Unknown Speaker 1:13:49
But the targets are template override.

Scott Benner 1:13:53
Let me pull it out. So I say the right thing. It is type Temp Basal start. And then I try to pick a duration. Right that I want it to go on for, say 30 minutes and I want a jacket way up and I jacket way up. And I do that because I think well if I only do it for 30 minutes, and I double or bazel she's only getting like these 30 minutes, bah bah, bah. And I do all that. And then at some point, it seems like the sometimes the loop just decides, you know what, no, we shouldn't be doing that. And it just shuts. I'm like, Wait, what? Why did I Why can I override it? If you can override me, this feels like being married. Like I feel like I'm an adult I should get to make a decision. But then there's this other thing in my life that's allowed to tell me no, you're stupid, you're wrong. And it's over. And then I don't get to say anything in return. So it won't let me outsmart it. And so opening the loop is the only thing that comes close. But then like I said, when you re close the loop, a lot of times you get high after that. So there's no winning. I have to stop I have to stop using this thing. I've got

Unknown Speaker 1:14:59
yeah or

Unknown Speaker 1:15:01
You, it takes a lot of experimentation to figure out.

Scott Benner 1:15:05
Okay, so good question. How long do I have to be at this before I feel better about this?

Unknown Speaker 1:15:10
Um

Unknown Speaker 1:15:14
How long did it take you to feel good about regular pump therapy?

Scott Benner 1:15:17
Oh, like six years?

Unknown Speaker 1:15:20
About six years? No, I

Scott Benner 1:15:27
think so. So so I am I'm obviously I'm a bit of a different breed in this scenario, right. So I can describe to you that when Arden was first on a pump, like Arden got a pump first, her a one seemed like eight and a half, and I was like, oh, we're gonna get an insulin pump. Everything's gonna be great. So, so her blood sugar went from like her, her he wants he's much like eight and a half like 7.9. I was like, Well, that was not the decrease. I was thinking. decrease. Yeah, so good, whatever.

Unknown Speaker 1:15:57
How old was he when she got a pump?

Scott Benner 1:15:59
Just four and a half. Okay, right. And so then Okay, so then we get to CGM a couple years later. Excuse me while I get a drink. We get to CGM a couple of years later. And I like go from like, languishing in the high sevens to like, all of a sudden, like, you know, lower sevens. And I was like, Oh, look at six point, you know, 7.2, like, really fancy. And at that time, the ideas that I've been blogging about started to kind of coalesce for me, I was like, Oh, my God, all these things are like, in line, like, there was a moment I was like, I have a system. You know what I mean? Like, so I started putting the system into practice a little more, so paying more attention to it. And that was it. Once I put those ideas, the ones I talked about on the podcast into play, 72686765646 boom, just kept falling. Like I couldn't stop her agency from going down. Without without loads, like I was just like, Oh, my God, I figured it out. And so I just sort of started turning up the power on my ideas until I got our agency to where I wanted it to be. I was like, Okay, these steps at this power equal 5.5. Just that that's it. I know what to do. And I went on to describe it to people on the podcast, and then it started working for them. Yeah, and then I'm gonna tell you like, no lie. I started talking to a family last Saturday, so not just this past couple days. So it's been about eight or nine days. And their son's teenage sons graph was a disaster. And at this point, now, it's amazing. It's really stunning. It just from talking to them, she helped me with something. So I helped her with this. Right. So we traded we traded it was like the barter system in the in the Old West. She She got me a water from her well, and I brought over my my cows for milk. And so we traded. And I, I fixed our kids blood sugar and eight days. Well, it's it's amazing, you should say. And so I know that thing so well. That this is just very infuriating. It just it really is. But I see the reason to understand it. Like I know I need to understand this. And so I'm not going to give up. But everyone I talked to, it's like I'm in a bad movie. That's a road. It's like a road trip movie. Like I meet Katie on the Hey, Katie Hill. Now Katie is like the queen of this. And then Katie tells me stuff like, that didn't really help me that much. And then I sit down with Jenny and Jenny tells me some stuff and I go back a little better. And then I was talking to him, like melody is gonna have the ends. No one has the I'm just walking through this road show movie and people I got Yeah, it's over that way. Like what? Yeah, just walked towards that, then.

Unknown Speaker 1:18:41
I think it's a more of a movie of self discovery, where you have to figure out the answers for yourself and no one's gonna hand them to you.

Scott Benner 1:18:46
Yeah, no, I don't. Yeah, I know. But you don't expect them to be handed. But I guess, I guess where my confusion comes in, or irritation? I don't know what you want to call it is that I was able to hand what I was doing to someone else. Right. And I want to meet the person who can hand loop to something. Right, and I haven't found that person yet. Ah.

Unknown Speaker 1:19:11
Um, so your lunch problem where you entered? You knew that she needed more insulin. Right. Right. So in the same way that you learn to, to bolus meals before loop you can learn to bolus meals with loop were like okay, last time we did this, and we put it in as 32 hours 33 hours and the insulin ran out before the carbs did so she needs more insulin. And so you entered is more carbs. Like I learned with the Starbucks sandwich that's it has to be a lot more carbs than I thought it was going to be.

Scott Benner 1:19:55
So I need so I should have lied to this thing about her meal today. And just lied to it about the amount of carbs until I was comfortable with how much insulin she got.

Unknown Speaker 1:20:05
I wouldn't call it line as much as

Unknown Speaker 1:20:09
like there's the face value carbs, and then the how the what the carbs actually do to her blood glucose.

Scott Benner 1:20:19
So I have to consider glycemic load and glycemic index. Yeah, I can't do that.

Unknown Speaker 1:20:25
Yeah.

Scott Benner 1:20:26
Why can't it do that? I'm just kidding. I know why.

Unknown Speaker 1:20:31
elimination technology.

Scott Benner 1:20:34
I understand why I can't. I yeah. So I guess here's, you know, what, maybe now that you, as you say it like that. And I am be trying to be a little introspective. I think the problem is, is that the idea of loop infers the idea of less effort, which I know it doesn't, yeah, like, but it does. It doesn't it doesn't.

Unknown Speaker 1:20:54
Right,

Scott Benner 1:20:55
right. Yeah. Like, how is it? Right, right. You know what it's like, it's like, if it's like, if 12 hours of the day, I had a really great spouse who loved me. And we had this great relationship, and then the other 12 hours a day,

Unknown Speaker 1:21:08
Jen, when the sun came up, yeah.

Scott Benner 1:21:10
Like she was just running around having sex for money. It makes sense, because, because in my 12 hours, whether she's, I think that's it like I think it lulls me into a sense of comfort, overnight, that doesn't exist during the day. And then I have trouble switching gears and going from, I don't have to pay much attention to diabetes to I do have to pay more attention to diabetes. You should be a therapist.

Unknown Speaker 1:21:40
Um, that is an interesting career choice I might consider.

Scott Benner 1:21:45
But no, seriously, you really helped me just now because I that that really is what happens is like, you just keep getting lulled into like, Oh, it's gonna be okay. I don't need to do this anymore. It works. I figured out my settings, like everybody tells me it's about the settings and settings, right? Look how good everything it's like your brain. It's you know what it is? It really is my hopeful nature. It's screwing me. Right? Because I see it work for 610, eight, you know, 12 hours in a row. And I'm like, Oh, yeah, loop works. It's great. I have my settings, right. Trust the settings, do the thing. And then I and then I don't realize that this is this is Jekyll and Hyde. Like it's one thing overnight, it's another thing during the day.

Unknown Speaker 1:22:26
Yeah, the the food is difficult. And yeah. And when it's working, it works so well. And when the food is not entered correctly, or I mean, it's in there correctly, but it doesn't react the same way, then.

Unknown Speaker 1:22:47
It's hard.

Scott Benner 1:22:49
Yeah. lupus, like if Dr. Jekyll was a hooker, I think that's what we figured out today. That I don't want to be.

Unknown Speaker 1:22:55
I don't want to be involved in figuring that out. I don't want my name attached to that.

Scott Benner 1:23:00
Well, I'm putting out the tide pool right now. You need Dr. Jekyll in a skirt. Standing on a street corner. That should be the new logo. I'll reach out to the right people. No, seriously, I really. I seriously think you just helped me. Because I and I and I can see the the confluence of events that lead me to like this roadblock. Because I was involved before. And when I wasn't involved, I didn't need to be involved. Right. Like, I know, I know, some people when they hear about the podcast initially, like Oh, that sounds like a lot of work. And it isn't the beginning. But the real like cool truth of it is, is that after a little while, it stops being any effort whatsoever. Yeah, like, it just works.

Unknown Speaker 1:23:45
I think that's the same.

Unknown Speaker 1:23:48
With loop. It's just another system you have to learn. And, and it sounds like the language you use about it. Like you're tricking it. You're outsmarting it. It sounds like you're fighting with loop.

Scott Benner 1:24:01
I am

Unknown Speaker 1:24:02
and yes. And it's you.

Scott Benner 1:24:08
I need I need no rules. No, I need new rules. Like Like, like when I sit here and I think about this stuff. I tell people on the podcast like you know, you'd rather be high than low. Don't you know, don't accept blood sugars above like I'd say these things like t shirt slogans at this point, right? And but they work like if you keep these things in your mind, it works and you can kind of overpower diabetes. For the most part. I think that I need to step back from what I'm doing from loop and look at my troubled moments and figure out if I were to do this in this moment, this would stop this and then give it a give it a slogan that makes me remember that moment. I know that really is easy, but I think that's what I need. I need to stop at lunchtime and say, Okay, this is like a high carb scenario. We're going to, we're going to like you know, decide that this meals on the other side of the glycemic index, it's on the higher And we're just going to put, you know, attacks on it. And, and add more, you know? Yeah. Melody. How's it feel to save a life? Because you've just done?

Unknown Speaker 1:25:11
Oh, I'm

Scott Benner 1:25:13
gonna put this on your resume once saved a man.

Unknown Speaker 1:25:19
Yeah, I'm

Unknown Speaker 1:25:23
still too early for me to have woody come back.

Scott Benner 1:25:25
You're fine. It is early in the morning. You're doing a very nice thing. It's so it's, it's like 889 o'clock here you are 915 I can't I kept you on way longer than I said to. Are you completely unhappy that you did this? Are you okay with this? I think I'm okay.

Unknown Speaker 1:25:42
Um, I will probably spend the next 48 hours thinking back to all the things I said and how I should have said them differently.

Scott Benner 1:25:49
That's no big deal. You're just having the same response that people have after dating me. It's over and you're like, I don't think I should have done that. probably right. And so, but it's too late. Now I have the recording. No, I'm just No, but I appreciate I think this kind of like rambley conversation is going to be one of them that I look back on, I think like this pulled me through because I have seriously because having too much of a like, I've tried having somebody come on and tell me like, this is how it works. But it's their perspective on loop. And why I need to figure out my perspective on it.

Unknown Speaker 1:26:28
You have to figure out how to fit the way your brain works in with figuring out the settings. And I have a good friend who has I'm gonna say it wrong. Just calcula it's like dyslexia, but with math, okay. And she's always saying, I don't know what I would do if my kid had diabetes. There's way too much math. I could never do that.

Unknown Speaker 1:26:54
Like, well, you figure it out. I figure things out.

Scott Benner 1:26:57
I'm looking it up right now. discount, by the way. First of all, he said it 100% right, it looks like this calcula severe difficulty and making arithmetic metathetical that Earth pathetical. What the heck calculations as a result of a brain disorder?

Unknown Speaker 1:27:13
Hmm. It's like dyslexia, generally, except for with numbers instead of numbers.

Scott Benner 1:27:19
Yeah, that that person's kid can't get diabetes. Oh, she'll have to return the kid. If that happens.

Unknown Speaker 1:27:26
You just know you can figure it out. I mean,

Unknown Speaker 1:27:31
I think everybody I think so. I think with accommodations, you can figure things out. It's like,

Scott Benner 1:27:37
yeah, I can tell you, your friend who I you know, I don't wish any bad on her family at all. I think that she is a she is the kind of person who hears my podcast and goes, this makes complete sense to me.

Unknown Speaker 1:27:50
Because it's not about the numbers. Right?

Scott Benner 1:27:52
Right. Yeah, see? She'd be fine. All right, I take it back. She'd be okay. Thank you very much for doing this. I want you to know that it doesn't go up right away. So you can you can, you know,

Unknown Speaker 1:28:05
cried about it for longer

Scott Benner 1:28:06
or no, just let me know that you really feel like you said something stupid. At one point. You're like, I really wish that wasn't in there. But I feel like you did a great job. When I edited I listened very closely to what's going back. You know, don't let anybody make a fool of themselves or anything like that. No, of course, but what am I trying to do? I'm trying to help people with diabetes, not not embarrass you. I'm embarrassing myself. I think that's enough embarrassment for the whole situation. I but I seriously think you really helped me just now. And I hope to be able to report back to you soon that I figured out a way to work more harmoniously with loop.

Unknown Speaker 1:28:40
Oh, I hope so. And

Unknown Speaker 1:28:44
yeah, and for for Arden sake. How does she feel about it? Oh,

Scott Benner 1:28:49
Arden doesn't want to do it. But Arden spoiled. Arden lived the life where she didn't really have diabetes.

Unknown Speaker 1:28:57
When and you were just doing everything? Well, like off camera.

Scott Benner 1:28:59
Yeah, we know we do it together. But that's such a small part of our day. So it really is I do believe true that most of the people who hear the podcast but don't follow along with trying it themselves, probably really don't believe me. But I don't think that prior to loop I thought about diabetes more than about six or eight minutes in total every 24 hours.

Unknown Speaker 1:29:20
Like you're recording a podcast about diabetes.

Scott Benner 1:29:22
Yes, that's a different thing. I take that out. But yeah, but so I really like she and I spent no time thinking about it now. With loop. I've been irritated and thinking about loop for the last two hours. I put more thought into diabetes today than I would have in a week without loop.

Unknown Speaker 1:29:37
Yeah. And so Matt always says that when when you start a new job, there's like six months of feeling like you're completely out of your element because you're learning new system new everything. And I think when learning a new diabetes management system is kind of the same because It makes you feel like all the things you already knew are not working in the situation.

Scott Benner 1:30:09
Yeah, yeah. It's everything I thought was right about the world I'm wrong about now. And that's it. Like, I just everything I thought was right is wrong, but I can learn this. And that is where I feel like that's where I'm at right now. I know I can. I know I can learn it. And I do have a little extra pressure because I feel like I need to learn it in a way where I can explain it. But I know I can learn it. I and I know that my time with it isn't as long as it probably feels. Although it's, you know, May, June, July, August, September. I'm getting there at six months now. But But the truth is, I'm way better at it today than I was three months ago. So it's coming. It just, it just is really a it's frustrating. To feel like it's fighting with you.

Unknown Speaker 1:30:51
Yeah, you know?

Unknown Speaker 1:30:54
Yeah, there are many moments where, where I'm, I'm not going to curse, but I do. And I'm like, What are you doing, Lou? And then I look and say, Oh, I didn't introduce carbs correctly, right? Or, Oh, I forgot to include the sugar in that car. pout, gotcha.

Scott Benner 1:31:14
I'm still very bad at the, you know, when you when you you know, tell it Hey, it's this is 20 carbs. And then later, it doesn't agree. Yeah, like, I still don't completely have that. I can't wrap that around. Like whatever it is, I need to wrap it around so I can understand it. Like if I tell it 20 and it says no. 17. Does that mean that at some point, it had to cut away more insulin because it didn't hit like 20 carbs? Or? Like you don't mean like we're What about when I tell it? 20 it says no, it was 30? Like I just I don't know. I don't know why it seems simple yet. When I look at it, I can't make sense of it. Um,

Unknown Speaker 1:31:55
yeah, then

Unknown Speaker 1:31:59
I

Unknown Speaker 1:32:02
I got a text in the middle of that from our nanny with Hazel.

Unknown Speaker 1:32:08
I'm good. But I missed the last half of your Senate.

Scott Benner 1:32:11
What I was gonna say what I'm saying is, is that when you tell some tell the loop Hey, this is 20 carbs. And later it tells you Oh, yeah, what was really 15? Right? Oh, my God, what does it mean when it says that?

Unknown Speaker 1:32:23
But the way your body absorbed it and the amount of insulin that was needed, matched 15 as opposed to 20?

Scott Benner 1:32:31
And what about the opposite? What if it says no 25?

Unknown Speaker 1:32:35
Then

Unknown Speaker 1:32:38
it's like saying, we used enough that your blood glucose data shows that you needed 25 grams worth of insulin.

Scott Benner 1:32:46
But you said 20

Unknown Speaker 1:32:47
Yeah, so it absorbs and, and so that's a really good thing to look at when you're when you're retrospectively looking at meals to see, okay, we just this is this, but it says, I don't this is 30. But it says that it absorbed like 45. So the next time she has this meal, he should do that. Do 45 gotcha. And, and it tells how long like the amount of time to. So that's honestly how we figured out our favorite pizza. Yeah. And now we eat pizza probably too often, partially because it's delicious. And partially because we know exactly how to Bolus and I know, I'm not going to be correcting this if we pizza. Nice.

Scott Benner 1:33:30
No, I mean, I would think I as you were saying that I thought I should be using that as a way to like measure load, like the load of the glycine, because I'm getting the Listen, I don't count carbs, but I can I can swag carbs pretty well. So I'm not like 30 carbs off when I make a decision, but that there is the impact that I'm off on sometimes. So I have to come up with a scenario where I understand what, how much extra carbs, covers impact of more carb, heavy food, or more dense food with more of a load. Okay. All right. I'm gonna let you off the hook. Now. You've done a lot for me today. I appreciate it. I don't know if anybody listening will get anything out of it. But I've gotten a lot out of it. So thank you very much. I really appreciate you walk away. It's kind of fun. Hey, you had fun. That's great. I can't tell because you're so West Coast and I'm east coast. I can't tell if you hate me or you were having a good

Unknown Speaker 1:34:25
Oh, mostly a good time.

Scott Benner 1:34:28
Ironically. I don't care. I just I can't tell. I'm just kidding. You were really terrific. Thank you so much for doing this.

Unknown Speaker 1:34:34
Thank you Have a good day. That's a

Scott Benner 1:34:37
huge thanks to melody for coming on the show and sharing what she's learned about the loop algorithm right. She helped me immensely as you heard. Today, I am much more adept at using loop. And it is very important to say that when this conversation was recorded, there was a difference. version of loop available. It has been updated since then. And the update has been a piece of how I've gotten to where you're going to hear next. You know, the next time I talk about looping, when I'm all like, yeah, I'm so good at this. It'll be because of what melody helped me with all the things I learned before all the people who helped me the time that we put into figuring it out, and of course, the hard work of the people who work on the algorithm. I want to thank very much the Contour Next One blood glucose meter, please go to Contour Next one.com click on the links in the show notes, click on the links at Juicebox podcast.com. And go get yourself a Contour. Next One blood glucose meter the thing just flat out rocks, and of course, touched by type one.org. Check them out today. Take a minute touched by type one.org go look at what they're doing. I don't usually give a heads up about future episodes. But later this week, another after dark episode is coming up. It's lovely. It is just really amazing. I am stunned by the open and honest nature of some of the people who come on this podcast. So there'll be another after dark episode coming up this week. And it's about trauma and addiction. You really should not miss it.


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