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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.

#146 Leo's Dad is not a Doctor

Scott Benner

D-Dad Daniel dishes about diabetes...

Daniel is the father of a young son living with type 1 diabetes. On this episode he and Scott chat about T1d issues, ideas and more.

You can also listen to the Juicebox Podcast on: Apple Podcasts/iOS - google play/android - iheart radio -  or your favorite podcast app. Now on Spotify.

+ 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, and welcome to Episode 146 of the Juicebox Podcast. Today's episode is sponsored by Dexcom. And on the pod in this episode of the podcast, I'm going to speak with Daniel who is Leo's Father, we have a really great kind of conversational episode together, it did strike me about halfway through that I don't think we ever spoke about one thing we meant to speak about, but I still really enjoyed it. As I was going back and editing and listening, I just found this one to be incredibly interesting. And I go into a bit of a rant in the 40 or 50 minute mark, which, you know, could happen sometimes. Anyway, Dan's a great guy, and a really good dad, he's just very interested in the ideas that are going to help his son live better with type one diabetes, and those are the things we end up talking about. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before being bold with insulin.

Daniel 1:12
All right, my name is Daniel. I am a father of a four year old type one diabetic who was diagnosed in January of 17.

Scott Benner 1:21
And so it is still 2017 It's October. Yes. Almost October, she you're only nine months in you're Yeah, you're really new. Wow. How did and do? Are we gonna say your son's name?

Daniel 1:33
Yes. My son's name is Leo. Okay. No,

Scott Benner 1:36
don't be sorry. I just, I just want I just want to be sure you want it to?

Unknown Speaker 1:39
Yeah, I'm fine with it.

Scott Benner 1:41
So Leo is was he for at diagnosis? Or he turned four since then?

Daniel 1:45
He was he turned four in November. I was diagnosed in January.

Scott Benner 1:50
Oh, wow. Okay. Yes. It's a big birthday celebration for you.

Daniel 1:54
Yes. Yes, it was. I know. You always ask what was the typical diagnosis, we were on vacation. And the four of us I have another child, we're down to Mexico. And we towards the last couple days, we noticed a lot of bathroom breaks, that we probably wouldn't have noticed if we are at home because he wouldn't have asked he would have just gone and then our flight home from Mexico to Cincinnati on the three plus hour flight. I think I had to get them taken to the bathroom. On a minimum of seven times. Not including before not including in the Mexican airport and the Cincinnati Ohio airport.

Scott Benner 2:29
So no, we didn't say this at the onset. But your position, right? No, no, I'm

Daniel 2:35
not. I'm not that that email address is just, it's gotten in plenty of places, but it is my initials.

Scott Benner 2:43
Just always assumed that that's not no not why I had you on the podcast, so don't worry about that. Yeah, yeah. So okay, so anyway, Daniel's got a misleading email address. So So doesn't matter.

Daniel 3:01
Say I know you so when my wife and I were younger, and we lived in Chicago, we lived in between two bars right by Wrigley Field. And the one bar next door used to always dump like nasty stinking mop water in the alley like in the park in our parking spot. Yeah. And I emailed the older man in Chicago. I'm not sure how you the alternate situation. But it's real shady, obviously in Chicago is by email the alderman and they were like, Dr. Webber, we'll get this taken care of right away. And I was like, thank you. Yeah.

Scott Benner 3:33
Yeah, just cracked me up. Because I had a whole thought process and where I was going, and then you know, when I went, Oh, okay, hold on. Anyway, forget that part. What? What about the urination? Like, what? Where did that take you to? Like, I

Daniel 3:46
never really asked that specific question your kid urinates nine times in three hours. What does it make you do next? We at first thought it was nervous or something like that flying I mean, the kid have drank a ton of you know virgin daiquiris and pina coladas all weekend long and there all week long. And we just kind of chalked it up to that. And then we came home, and probably like the eighth and ninth of January, he was just like, he still wears a pull up. Not anymore, thank goodness, but he was still wearing a pull up. And he was just soaking through the pull up in the bed. And after two days of that, my brother in law is a pediatrician. So my brother in law here in Cincinnati, my wife called him and said, You know, I think there's, I think there's something wrong and and he called me immediately after getting on the phone with her and he's like, you know, is this is this Melissa being Melissa? Or do you really think there's something wrong? And I said, It's me. I said I was working on I told her to call I think there's something wrong, you know that it doesn't seem right. And obviously, in this day and age, you go down the Google hole and you read everything you want. And we had a pretty good idea, but my brother and I kept saying there's no way there's no way. And you know, we I was supposed to fly out to Chicago like that afternoon or something like that. And he said, Bring him in on my lunch break and I'll have them go in a cup and he went to cup and Leah and I were just kind sitting in the front of the office, and I saw him like kind of frantically running around and I was like, we know what this is. And then you know, they prick his finger and it just says hi. And, you know, we spend the next few days at Children's Hospital.

Scott Benner 5:12
didn't I? I'm sorry, the most The best part of this I interview a lot of ladies mostly. But so far my favorite part of this is, is it's the part where your, your wife calls her brother to get medical advice, then he circumvents her to check with you to make sure she's not being hysterical. Right. Right.

Daniel 5:32
Well, and it was, yeah, I mean, it was definitely It was definitely a shock to us. But it was like, you know, you you kind of deal with the cards that are dealt you and you play the cards that are dealt you and we went from there. Right? And yeah, well, so

Scott Benner 5:46
tell me that. Then having a it's interesting. So now your your your pediatrician is related to you. It's different. It's close. What does he have you do immediately. I mean, he sent you right to the hospital or he,

Daniel 5:59
I mean, he called the hospital because he knows people, his you know, his family's been pediatricians in this in this area for a long time. So he calls Children's Hospital here in Cincinnati, which we're lucky to have a great Children's Hospital. And they told them you know, we don't have any beds right now. And he's not in decay or anything like that. His number is not too high. So you know, we'll have open beds at six o'clock. So just go home pack a bag, do what you're gonna do and bring him over tonight. And we did okay.

Scott Benner 6:22
Yeah, well, listen, Cincinnati's got all that extra. I mean, they don't put any effort into that football team. So you can put it somewhere else. Correct. Exactly, exactly. children's hospitals and things like that, which is probably Yeah, better serve, by the way.

Unknown Speaker 6:34
Yes. Yeah, exactly.

Scott Benner 6:36
I saw my son brought me his phone the other day. And he's, I don't know when your children get older if Twitter will still be a thing. But I do a lot of interacting with my 17 year old son where he goes, Hey, look at this. And he throws a phone up in my face. Right. And it was, it was about it was about kin It was about North Korea, and the and the bangles and it said like what is North Korea and the Cincinnati Bengals have in common? I'm always hearing about all the weapons they have. But something I don't know the rest of it. It was it made me laugh though.

Daniel 7:06
I'm not I'm not a native cincinnatian. But living here. We've been here for three years. My wife was born and raised here. And like, the love for the bangles baffles me people just love them and they're just not good. And like they they fired the who did they fire they fire the offensive coordinator yesterday or something like that, like for the first time and offensive coordinator have been fired during the season. But Marvin Lewis has been the coach for like 12 years, and they've done nothing. Like you know,

Unknown Speaker 7:34
it might be a really nice guy.

Daniel 7:36
Yeah, right. Well,

Scott Benner 7:38
I'm sorry to hear that your wife dragged you to Cincinnati. Yeah, yeah. So So you said, you were getting ready to go on a plane. But you did. You stayed back when when your son was diagnosed and stayed home? Or did you?

Daniel 7:50
Yeah, yeah. I mean, I luckily I traveled for work. And I work for a kind of family company based out of Chicago. They're not family anymore, but. And they just kind of understand everything. So I just said, I can't go on this trip. And I and I think I had to go on a sales meeting with the customer. And I just called someone else on my team and said, Hey, can you fly out there and do this for me? They said, Yeah, no problem. And we spent three days like I said, at Children's Hospital here.

Scott Benner 8:13
So what's the advice you get? Now, since you have sort of a backdoor through your through your brother in law? What's the like? I don't know what Leo uses right now. Does he have a pump?

Daniel 8:23
He's on an omni pod into Dexcom.

Scott Benner 8:25
Okay. And so what gets you to that? Like, how do you get to that? Is it something you see something you find online, something your brother in law says to you how does that work, though?

Daniel 8:34
I mean, my brother in law is a great pediatrician, but he really has nothing to do with the diabetes care, because that's just you know, he's just a pediatrician. So, he, he, he, I think he came to children's hospital that night with us and kind of just dropped us off and dealt with that just to meet the people that he knew. And then there was a fantastic nutritionist at Children's Hospital who was just Dexcom Dexcom Dexcom. All she would talk about is how great the next comment is. And what I've learned to see through the T Wendy community is that like, there's so many like connections involved, you know, I feel like 90% of the nurses or the or the, or the nutritionist at Children's Hospital, either had diabetes, or had a kid who had diabetes or grew up with a sibling had diabetes, they're all just so connected to it. So this this nutritionist was just talking about Dexcom you know, all she could like she just kept talking about it. So we didn't really talk with the doctors about it then but then I came home we came home on 13th I think and I just asked my brother in law I said can you call this into Kroger and he called it into Kroger and we we put it on the first time blindly without any any lessons and that was probably the easiest that went on for the first two months and then we struck out about 100 times the next couple times he tried to do it. But Kroger the funniest part about it was Kroger kept calling me asking me Are you sure you want this? Are you sure you want this? it's gonna cost this much money and I was like Fill the prescription. I'll be there now to pick it up. You know, like,

Scott Benner 10:03
and so what? So that's interesting. So did you. Do you have insurance? That? Yeah, yeah. And so it's they're talking about your, your portion of it. Yeah. And yet they tried to make they try to try to talk you out of it. Yeah,

Daniel 10:18
they basically were like, I mean, it was January 13. So we have, we're on a high deductible plan. And we were paying everything out of pocket until we hit that deductible, you know, which was hit on I think, January 17. But that's okay. So, you know, they kept just they called, they called Melissa my life saying, you know, is this is this accurate? And she's like, fill it and they called me, I was like, fill it. And, you know, we obviously I would love to use Kroger, but we switched to mail order.

Scott Benner 10:44
Yeah. Interesting, though, isn't it funny that I mean, it's because that happens to us too. It's, you know, you have the the calendar flips, you need to make your deductible. And inevitably, it's time to buy some stuff and re decide instead of getting hit $100 here and $100. There, you're all of a sudden, like, Okay, this is just one big thousands of dollars bill comes you're like, Okay,

Daniel 11:05
I just I've been joking with with my wife recently. I was like, I wish I knew at first I could just write you know, your health care check. Here you go. Just because we're, we don't we have since the 14th. We paid like zero like absolutely nothing. Right. Right. Yeah. So all the equipment comes my pumps come this time that comment? It's like, here you go. Okay. All right.

Scott Benner 11:25
So you had a Dexcom before an insulin pump? We did. Okay, and what did what did that? So that's interesting. So what, what did you what feedback were you getting from your CGM that told you that my next step is an insulin pump.

Daniel 11:40
I think I mean, this is gonna sound really funny, but like Leo is an eater and kind of like a grazer. And we would have to go, you know, that route that says, like, like, you know, you can have it, but then you need a shot, and like, we would begin to feel bad about it. And so we went around and started talking to children about when we can get a pump, when we did all the pump classes, and it was just kind of made sense. You know, like, it is honestly made our life much easier minus that email I sent you the other day, which we can talk about later. But like, just the fact that like, you know, we walked through Costco and he wants to have a sample. And instead of having to say, we'll take it home, he did I just say do do, and he can eat whatever it is. I think that like my wife, and I got a pretty good grasp of diabetes, right from the start, like, we just kind of looked at it and said, You know, this is what we need to do, and we're going to do it and we're going to get it done, you know, and for the first couple of months, probably like, five, six months, we tried to like control it as much as we could. And as soon as we realized that we can't really have all that control that we can do the best that we can, right. You know, that's when things became a little easier for us until we started. We started Omni pod in.

Scott Benner 12:45
Okay, Major. Okay, so that's really quick, which I like, I like hearing that people got to things like that, like quickly, like without having to, you know, struggle, or I just just saw I mean, it's 2017, almost into 2017. I saw a person this morning online, say, I asked my kids PDF are my kids, endo, we want to Dexcom? And they said, No, we're not ready for that yet. I was like, what does that mean? Exactly. And so you're a person who took it. You didn't speak to anyone about it, you know, slapped it on, he

Daniel 13:19
started going, and I'm pretty sure that Children's Hospital here was like, I remember I called in to say, we have a deck calm. Can you put that in our file? And can you can you go Can you call the center prescription into opt in or whatever the heck fills it now? And they said you have a lot and I said we have a dexcom and they're like, Where did you get it? And I was like my brother in law's pediatrician. He wrote the prescription for me, like, that's just me, you know, it was a weekend and we wanted it, you know, like, I think that we wanted our goal for Leo is to make sure that his life is not any different. You know, we want to make sure that he went with us, he was diagnosed on the 10th I think it was maybe a Wednesday, he was back to school on Monday or preschool on Monday. Like we wanted to make sure that he could go back to school. He goes to a small Montessori School, and you know, they don't have a nurse. So we wanted to be able to track it wherever he was, and know that we needed to do something. And so it was just like a no brainer for us.

Scott Benner 14:11
Yeah, yeah, that's really excellent. Actually, it just, it I think what it shows more than anything, is that that kind of old paradigm idea of you should have diabetes for months and years. Once you really understand how to, you know, once you really understand how to build a fire with sticks and hay in the sun and a broken piece of glass after you get that will give you a lighter, right and you know, maybe, you know, well why don't we just skip ahead? A little bit at least like there's no reason. I can't fathom a reason why you wouldn't let allow somebody to try a CGM.

Daniel 14:48
I mean, I think that like there could be a little bit of a data overload but I like it. You know, I like to be able to look at it. I like to be able to track it. I think I was joking with my wife this morning because like, I went in, he was like, What 143 at like, 5am, and I was like, ooh, got a crack that, you know, like, maybe they never CGM, I sleep a little better. But, you know, I don't know that it's worth it.

Scott Benner 15:12
It's an interesting concept to the idea that, you know, so you just said something that I just made me think of just an odd analogy. But if I had a fire alarm going off in a far reach of my house, but the house wasn't burning down, I don't know, if I'd be like, I would just write one I wander down in the basement, find out why that thing's beeping. And, and, and maybe I get down there, and it's beeping, because the battery's dead. And maybe I get down there, and it's beeping, because, you know, my, my heater is making a little smell or something I don't exactly know, but at least I know what's happening now. Right? Right. It's an interesting concept, with a health issue, an interesting concept to think that there's, there's something happening, but because it's not killing me, right, this second, just gonna ignore it. And that's just an oddity to me, like I get it is,

Daniel 16:03
I mean, we obviously follow groups and read things and some of the things I read where I'm just like, and obviously, we're nine months, I know, whatever that is, and I you know, I think we're doing a pretty good job. But I look at it and I'm like, well, I'll just let him eat it. And I'll correct it when the time. Yeah. Like, really? That's, yeah, that's

Unknown Speaker 16:23
good. Yeah.

Daniel 16:24
And I understand that not and I've heard you talk about it before, you know, you could meet smart CEOs who just can't get a grasp of diabetes and couldn't understand it, you know, like, but, you know, some things I feel like you should be able

Scott Benner 16:36
to think that's, I think, in that specific, you know, situation, I think it's fear to like, I think it's the idea that the, you know, I really for, because think about it, if you think hey, there's going to be food here, in what you've only been with diabetes for nine months, if you ever seen food not need insulin? No, right? Because that would be not having diabetes. So right, you can say, well, maybe I had a bolus longer ago, and maybe it was too much. And you know, there might be some insulin leftover you can maybe yourself to death. But that's fear. That's the idea of I don't have the unknown not wanting to breach the unknown, where and so in a strange way, getting a high blood sugar that you can later correct down is at least an understood quantity. You're right. And so if you're if you are operating from a fearful position, I almost get that I get the idea of why don't we Why don't we just let them get high? Because I know how to take care of that. And that doesn't seem like it's going to cause them to have a seizure. Right, essentially. So you know, but I'm, I'm the opposite. I'm, you know, I didn't had some pretty Arden had some fairly spectacular lows this summer. And they were overnight. And they required a lot of intervention and a lot, a lot of effort and not a lot of sleeping at some points. Right. But it never occurred to me to let her blood sugar be 200 when she went to bed to know that that it never I never considered that. So

Daniel 18:09
yeah, I mean, I think we we try to, you know, play, not play but use insulin as much as possible and take care of it. And there's always a juice box, or, you know, if I gave Leo juice box, he's so little, he would just skyrocket so there's always a quarter of a juice box or something like that, that can take care of it. And I think at the start, we tried to deal with it more like healthy, you know, here's an Africa here's this, you know, and now we're like, here's a Skittle here's an area, you know, they work much quicker and you don't bite me for him. So

Scott Benner 18:38
put your head back while I put the sugar shaker in your face. Seriously, listen, if it makes you feel better, I did something last night that I I hardly ever do and wouldn't really recommend because it is not good for your teeth. But our didn't hit this blood sugar. And last night I don't know if it was one o'clock in the morning maybe and she just kind of went to a spot and I was like you've got to be kidding me. And I and there was no insulin happening. So I thought I know what we'll do. I know what's gonna take her right back to 90 and leave her there. So in her she's, she's asleep. And I whispered to her, Hey, I'm really sorry, I need you to eat these fruits next. And so her mouth like she lays back and I just take two fruit snacks at a time bump them on her lip. she opens her mouth she chews them up when I'm sure she's done. I must have given her I don't seven of them. And then I had her drink a little water and rinse your mouth out a little bit. And and then she went back to sleep this morning. This by the way worked perfect for the budget. Right and and this morning, she comes into my room and she it's dark. You know it's early. Right as dad did I have fruit snacks in my sleep last night. And I said Yeah, why? And she goes there's one stuck in my hair.

Daniel 19:53
I'm amazed with with Leo like he'll he doesn't wake up for a thing like I'll grab it. His hand and he'll stick a finger out. All you know, if he's just falling asleep, it's hard to get him to take like a we were we were shying away from glucose tabs, but they're just so easy that we're now just like, here you go use them. So he'll like you just put it to his left, he puts it any choose, it doesn't remember a thing like it's fantastic. Yeah,

Scott Benner 20:19
I think some people have a question in their mind about how much information is too much information, and how much involvement is too much involvement. When they're talking about their type one diabetes, you're trying to make life easier, not more complicated. And I think sometimes if you don't completely understand what on the pot and Dexcom bring to your life with these devices bring it can sound like they're bringing you work more, I want you to try to imagine that that's completely opposite of the truth. When you get this data back, you can see I put a bullet in here, and this is what happened. I cut off my bazel here for half an hour. And this is what happened. When you get that information back, you start making these decisions that are so kind of precise and intuitive, that the alarms don't happen anymore, your involvement with diabetes actually goes down. The more you understand up front, the less you have to do later. So I'm giving you a combination ad today, this is for Dexcom. And on the pot, because I want to talk about them both. I don't think this is what they paid me for. And they might be mad if they heard it. But darn it, this is the right way to talk about this today. If your Dexcom tells you your blood sugar's 120, and it's starting to creep up, you can give yourself a tiny little bolus and fix that if your blood sugar sitting at 80. And you're worried that it's going to get lower, but it doesn't seem to quite be moving, you can take your Omnipod and just shut your bazel off for a little while. And then that'll allow your blood sugar to drift back up. shutting off your Basal is not going to stop a crashing low. But it could make that little bump and that little bump could be the difference between just bringing in an ad back to a 90 or feeding an ad and then having it be 200 this is a really important aspect of type one diabetes management once you start understanding these concepts, everything just gets so much easier. And when things get easier. alarms happened last. Arden stacks calm. She's at school now it's like 12 o'clock in the afternoon hasn't been once all day. Not once. So Arden's blood sugar has been between 70 and 120 since she's been at school, the last thing I said to her on the way out the door was, hey, we're going to do a little bit of insulin here. I think we both like a point seven for a blood sugar that was 120 diagonal up but she was leaving. It came right back down. She was 110 before lunch. With all this knowledge in this data, I was able to bolus Arden's insulin 15 minutes before she even left her class to go to lunch. So now she has a healthy Pre-Bolus going for a really fun kid meal. I don't know what you're sending to your kids for lunch. But today Arden had a bagel and cupcakes and cheese. It's and I don't know what else up a bunch of stuff. Stuff You don't normally think about being able to give a kid with diabetes and keeping their blood sugar at 110. But again, it's the data it's the information that comes back from the Omni pod and the dex comm This is where this is where the genius lies. Once you have a few experiences, and you can believe that what these devices are telling you is true, the whole world opens up for you. So I want you to go to my omnipod.com Ford slash juice box and ask for a demo pod today they are free and they have no obligation. I'll take you two minutes to get one. And then I want you to go to dexcom.com forward slash juice box and start learning about the Dexcom continuous glucose monitor. These are important steps and ads in the future I'll do more the way the companies want me to do them. But for today, you guys really need to understand this is how I do what you hear me talking about. If you're listening to this podcast and you want to get these things accomplished. I do them with Omnipod and Dexcom I think you could tell right I'm never not amazed by the waking up in the morning and her walking downstairs with a banana peel in her hand going bananas Yeah, all the data in your sleep

Unknown Speaker 24:13
I got

Scott Benner 24:15
no no no I was just gonna say it's fascinating I can't imagine if I walked up to my wife tomorrow night while she was sleeping and I don't know a handful of food my hand and I was like hey here eat this that she would that in the morning she wouldn't look at me and go Are you out of your mind did

Unknown Speaker 24:30
you want to know

Scott Benner 24:33
you know or whatever it ends up being but but I it's just I don't know I don't even know how to explain it to be perfectly honest. It's

Daniel 24:39
faster Yeah, I just think it's it's truly like I just don't know how he doesn't. Did I wake up last night did I do this? Did I do that? And now we've mixed in the whole thing where I told him he was no longer worrying pull up so I waking him up at midnight to pee doesn't remember that either. Like I got I just don't get it.

Scott Benner 24:55
I'll tell you that sounds fantastic to be perfectly because I remember every time I paid last night, yeah, exactly, exactly. Wandering to the bathroom, just being like, I can't believe I got older.

Daniel 25:09
I'll walk into Leo's room and do the quietest thing. And he doesn't move. And we have a 14 or 15 month old, who is the room next door? I opened the door and that guy's crying like, it's ridiculous.

Scott Benner 25:21
Well, so anyway, Daniel, how did we end up together on the podcast? I know, we're pretty much 25 minutes into this and I forget why you're coming on, tell

Daniel 25:30
me. I sent an email and I said, I love your podcast. And if you're looking to talk to a, you know, a newly diagnosed Father, I guess I'm not gonna be diagnosed that my son was newly diagnosed. I said, you know, I'd love to chat. You know, there's questions I may have. There's questions you may want to know about my thoughts and ask some of those, you know, and I think one of the ones that I'm more shocked about that I, like I said, emailed you today was more crazy about is that we went in so confidently to his last visit. And then he went, he was up. Yeah. And that was just crazy to me. Yeah, there's

Scott Benner 26:00
this there's this thing that I don't know if I've ever I don't think I've never said it willfully. or not, but it's, it so falls into the, into the auspice of advice that I guess it's just not something I say a lot. And I have no way to quantify it. It's something I it's something I heard on the internet that I that I tried and work. Yeah, and and so Danny will say here that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. But if you are using an omni pod PDM as your meter, and you're using the freestyle test strips that are coded as 16. On the test strips, there are people who might tell you that you should set the code on the PDM at 18. Some people use 17, I use 18. When I did that, it helped my daughters they want to go down. So you can absolutely take that for whatever you want to take it for I'm not even making any assertions about it. What I will say is that device manufacturers are in an interesting situation where they go to the FDA, they make a claim about this device that they've created, the FDA verifies that claim, and then they are allowed to sell it to you. If they want to change that claim, they have to go back to the FDA, it takes a very long time and invalidates their device. So a lot of companies can't do that. It just doesn't work. reasons that I don't understand in any way, shape, or form, technically or otherwise, when I have ardens PDM when I tell ardens PDM that her test strips are code 18. When they're really code 16, we get much better, more accurate. Blood Sugar checks that more closely agree with her Dexcom. And I'm assuming because of that, we're able to make decisions like so basically, if you're in a situation where you're like, hey, my blood sugar is 110 I'm happy with that. But it's actually I don't know, 140 then your a one c may come back higher than you expect. And it's harder to deal. Like when I'm trying to deal in a world where I want a blood sugar to be at. I need to know it's really 80 I can't write you know what I mean? It can't be it can't be higher or lower because I'm I'm working with small tolerances. So anyway, if you have a on the pod PDM maybe give it a try. Maybe don't I'm certainly not telling you what to do. But Dan here had an issue with Leo where he has a one seat was higher than his blood test indicated it might be. And that was the that was the sage like wisdom that I passed to him that had been passed to me years and years and years ago by some nice person on the internet. So So what happened that you went in and you thought we're gonna be at what what do you want see where you like, this is what we thought we were going to be in the low sixes right?

Daniel 28:58
So he wasn't that he was 771 diagnosed, he wasn't that high. Okay, we immediately dropped to six something, I think six seven then six, six. And we thought we were trending in the lower lower sixes and it came back in the lower lower sevens and we were like what, and endocrinologist couldn't speak to it and was giving us round about answers and none of it made sense. And you know, I think that if you were sitting in the room as a fly on the wall, you could see how frustrated I was with it. And then you know, we fell down that Google rabbit hole like he talked about and we looked and then we we saw it the only variable in the two was he started a pump in May which was two weeks after after last one see. So we went to a totally different meter. So um, since then we are testing on three different meters now but only using only using one cu update.com obviously,

Scott Benner 30:01
you could probably stop doing that, but I get it. But I want to congratulate you on being serious. you're checking, I want to congratulate you for being so rational about it and looking and saying what's different in our lives? Because you went to something that most common sense would tell you well, getting a pump would have helped not right. And in getting the pump didn't hurt. It was this one specific tiny aspect of it. You you I think you knew when you asked me to be perfectly honest,

Unknown Speaker 30:28
right? Yeah, right. Yeah.

Daniel 30:30
I mean, yeah, I read all over the internet, but I just, you know, wanted to hear it from other people. And it's some of it I even called Omni pod. And they're like, no, ours is perfect. And Omni pod is great. Don't get me wrong.

Scott Benner 30:40
No, but they're there listen to listen on, the pod is on the pod is stuck doing what the FDA has told them. They're allowed to say about their products. Right? I listen, I privately have conversations with people at Dexcom a number of times a year where I say to them, hey, you give people this, I always put it like this. I'm like you give people a bazooka, then you teach them how to kill a fly with it. I said, right. Like, why don't we Why don't we learn how to blow up a tank with it? You know, like, right, I think that's what it's for. except they're not legally allowed to say certain things about what their product does. Because it's because if they spent that much time going after all that from the FDA, if they, they never would have got the product on the market, right. But they proved out everything they wanted to prove out like here's one look, I'll say this. Absolutely. Without a doubt. The lower you put your higher threshold on your Dexcom CGM, the lower you make that line when it tells you Hey, your blood sugar's on the way up, the lower you put that the lower your a one C is going to be I can absolutely unequivocably tell you that that is true Dexcom would be happy to tell you that's true. Except they weren't able to ask that of the FDA before they got the thing thing. So they can't actually come out and say it like, right.

Daniel 31:53
I mean, I think one of the other crazy parts of us was is that we were showing we like I literally like had all this data printed out obviously. I showed the doctor I was like we came in at our last checkup and he was averaging a 144 on Dexcom, which is fantastic where this many months in and there's a one C was like, perfectly spot on match to that. And now we're three months later, he's averaging a 130 something. And Aria once he's way off, like what's going on, he's like, well, the a one c score and the blood glucose aren't the same. And I was like, you're grasping at straws here, man, like I understand you don't have the answer.

Scott Benner 32:26
But stop saying random things. Right? Right. Exactly. You have to when you go back down, you have to stop yourself from just looking at him going. You don't know what you're saying. I thought about going on

Daniel 32:38
like the patient portal and being like, we did some research. And here we are. We'll talk in three months and see what happens. You know,

Scott Benner 32:45
let me say this at Arden's last Arden's last. A one C was a couple weeks ago. So her last point was a couple weeks ago. And there's something going on with Arden that I don't not really ready to talk about yet because I don't completely understand that. And, and but but I'm in there asking questions, right? The answers I'm getting back, it's the same thing. It's it's like, you know, you ask the question, you felt like the answer. They were like, have you considered that? It's because the sky is blue? I'm like, No, I hadn't considered. It doesn't make any sense. And you know, so they're just, well, what about this? What about this? And then it comes to they're like, well, let's just wait. And I went home and I was talking to my wife and I'm like, I'm not comfortable waiting, like, why are we waiting? This doesn't make any sense. And we we pressed the doctor and said, No, we're not gonna wait. We didn't wait and it's a week later and I think we found the answer now it takes I can't just start coming on the podcast and telling you stuff like that yet because I don't I don't know for sure. And I don't want to put information out that's not that's not accurate. But but that's exactly what happened was like, why am I waiting? You just I just sat in front of a person for 45 minutes who said nothing to me. They spoke a lot of words didn't say anything. I left going well, this was a waste of an hour. And and on top of that Arden's a one c went up. So I was already bummed out, it was six, which I'm not complaining about, but right she had so many lows in the past three months that we were just, you know, it ended up not it wasn't as stable and when it's not as stable then it's harder to hold lower numbers because the variabilities you know, right. I'm not literally not complaining a sixes phenomenon, right? But we were 5.6 the time before and so you can you can see the difference. It's just a tiny bit of variability caused the half a point move imagine what happens when you're at 150 all the time, or you know, that's how you get two points higher. Anyway,

Daniel 34:36
yeah, and I kept like a cleaner wife. I was like, No, we have really good control like you can see we have good control of it but our numbers not right, like so. I mean, I was I was expecting him like I was complaining enough that I thought he was gonna say let's rerun the test and he did not do that. And I ordered home a one T one test a one t test on Amazon, but I didn't use them. If I do You don't work because I

Scott Benner 35:01
it's something I wouldn't occur to me to do, because it just seems like it wouldn't work. But

Daniel 35:05
um, yeah, I mean, they have them. And I was like, I'm willing to try it just to see if I get the same. And then once we thought about it more logically and realize, you know, here's the variable. I'm like, okay, I don't need to spend the $50. And I returned them.

Scott Benner 35:15
Right? Good for you. So I just had this whole picture in my head where you're explaining to your wife, no, you don't understand we have the numbers. This isn't right. And just in my mind, the thought bubbles over her head, or I, my mom was right, I should have married this guy babbling about numbers. And he's clearly he's clearly wrong. And I'm gonna have to start cheating soon.

Unknown Speaker 35:38
Like I just said the whole thing rolling through her head. But

Daniel 35:41
he was almost he was just as upset as I was. We were just like, I just don't understand. I mean, we do a really good job of like, sharing the responsibilities. And I traveled for work. So she's, she's on top of it a ton of the time as well. But like, we were both just like, what are we going to do? And I think she from the start, she was more like, we need to get that number lower. We need to get that number lower. And I was like, I wasn't there with her yet. I was like, let's just get this under control. You know, it's new to us. And now I'm like, No, get like give them into Lenny's do I

Scott Benner 36:11
140 What are we doing? Yeah, national tragedy in your home. Yeah. look sad lays down doesn't get up for an hour's like how the boys at? Leo went to 141. Yeah, exactly. We covered all the windows are sitting. But listen, I think that's By the way, do you find that easier? I find it easier to keep blood sugar's lower than I do to chase them around when I'm chasing them around. I get I'm exasperated all the time.

Daniel 36:40
I think I definitely I mean, I think you said it last week, you'd rather flat up or down last week, obviously a long time ago now. But you said you'd rather battle a 67 than a 267 or something like that. I'm 100. We both are 100%. in that in that campus thought, you know, we want to battle not that low. Obviously. I think it's really hard to have that. What am I trying to say? The Children's Hospital does not agree. I think the tech is way behind, or the hospital's way behind where the tech is. And obviously, I think that the hospital and the doctors have to deal with, with the average, not with the people that understand it, or the people that can afford cgms and whatnot. You know, like, every time I'm in there, they're like, you know, this is rad. I'm like, it was 75 you know, like, when he turns when he turns five, you're gonna tell me a 70s. Okay, right. So why are we even talking about it? And I always say to him, I said, I have to imagine that. With with people having seen cgms the the risk of extreme lows has to go down. So we need to talk more about that, you know, like, obviously, we were going to lunch the other day, and he was 71 and straight across. And I was like, Okay, I think I can Pre-Bolus. And before we get there, so I Pre-Bolus them. And then literally we pulled out of the garage and he went double arrows at like 68 I was like, Oh, this is going to be bad news. So we pull into Starbucks, where we're going anyways, just down the street for the fabulous lunch that it is. And I order his peanut butter and jelly. And then I pricked his finger, and he was a 30. And that's the lowest I've ever seen him, right. And I like went up to the counter, I was like, I'm gonna pay for this juice. And the second and like, you know, like, obviously, you can deal with it. And I don't want that to happen all the time. But at least I knew it was coming. You know, like, I feel like at that CGM would have said 38 that he would have been, you know, at 28 or 20. And that would have been a different story. You know, so having the technology there. And I just feel like sometimes the doctors don't understand that we're monitoring it. You know, I don't want to be like I'm helicopter parenting, but we're monitoring it 24 hours a day. Like I always know what's happening.

Scott Benner 38:33
Dan, you just warmed my heart so much. It was already swollen with pride, and then it's grown more. I want everyone to hear that even though it didn't go well can Pre-Bolus a 71 he's a madman. It's fantastic. I will tell you the this so far, this new school year is only a week or so old. But you can Arden is she more mature now. So there's a lot of that anxiety about school starting is gone away. So we didn't get the highs that we usually been getting years before in the first week or so. And she's been coming in coming into our Pre-Bolus at lunch a little lower than she did last year. So I'm seeing a lot of like 80s and 75 like when we're trying to Pre-Bolus all I did all I've been doing is been Pre-Bolus thing with more of an extended bazel. So not that not the correct I'm not correcting you, but that's 71 if you would have done I get you're trying to get some insulin moving and you're gonna be there in a couple minutes. And you can believe that that insulin is not even gonna start working before you're sitting down and you you experienced the low off of something that happened prior. But right it sounds like to me, but I but what I've been doing in school lately is like you know, it's if it's an eight unit bolus for 10 unit bolus for lunch, it's here's 20% now and then the other over a half hour or an hour and that that way it's happening it's moving her blood sugar's going in the right direction when she starts the but I haven't done A ton of insulin Endor when she's a little she's to loading right.

Daniel 40:05
And that's the one of the other funny things you mentioned. The other thing that hospitals really not on top of is like they're like he's for don't people. And I'm like, No, thank you. If you know if he doesn't want to finish this pancake, then I'll you know, he'll eat in Africa, and we'll be okay with it. Like, I got to be in the right place for that.

Scott Benner 40:23
Yeah, it's, um, it is really, I mean, you get the idea. Like everybody hearing it, it's just thought the same thing. I just thought like, it's sometimes a four year old might just look up at you and be like, I'm not eating that. And then you are gonna be in a situation where you curse under your breath for a second. And then you're like, Okay, how do I make up for the all the insulin I just gave him, he's not gonna eat this pancake or whatever. But if that happens every once in a while, isn't that way better than the alternative of your kids blood sugar being 250 all the time. Like,

Daniel 40:53
I mean, not common sense. We have barely gone over a two we barely go over 200 now on spikes, and we are much happier and a house because of it. We can see that he is happier. He had a soccer game last weekend. He was really high going into it. And it was miserable to watch and to be a parent of like, I just wanted to pull him out of there because he did not want to be bothered to get participating. And then we had another one this weekend. And he was like he went in at 150. And it was perfect.

Scott Benner 41:20
Yeah. Well, last last night, Arden had a we had a an insulin pump site. Go ahead sooner than I expected it to. So she gets this now for me. She's She's has these stubborn highs that I can affect. And when I tell you that if I told you we were battling stubborn highs yesterday, How high do you think I'm talking about?

Daniel 41:38
I mean, listening to you, I know you probably like 190 Yeah, it was 150.

Scott Benner 41:41
I was like this mess. Yeah, everything is upside down. This isn't working, right. So I tried, I pushed and pushed as she was in the afternoon school, she came home. The first thing I said to her was, I'm going to Bolus this one more time. And I said, if it doesn't respond the way I expect it to, if there's not some sort of outside influence going on, that I can understand that's maybe more psychological with her or like, you know, physiological that I can't write, you know, one more bowl is this doesn't work. We're bailing on this thing. And so we did bail on it. But I was on a phone call. And so I did it later than I wanted to. And I realized that as I was handing her dinner, I was like, this is probably not gonna go well, you know. And so I bullish really heavily with the new pod. And it took a while for it to actually work. So her blood sugar hit, it went way up last night, it went to like 364 an hour. And so it was just one of those things where she ate a meal with basically, not nearly enough insulin, and I got it back down pretty quickly. But when it popped up in that hour, I heard she's doing her homework, she came over, she looked tired when she shouldn't have looked tired. And then she said to me, Hey, can you rub my ankle, my ankles are starting to hurt and like, you know, all this stuff that you don't realize is from the high blood sugar.

Daniel 42:56
Right? And it's I mean, she's she's older, so at least you can like, tell you what the issue is. I mean, try having a four year old try to tell you what his problem is, you know, and a lot of times he'll just tell us he's low because he thinks he's gonna get sugar snacks, you know? The cookie? Yeah, yes, exactly. That's what comes

Scott Benner 43:12
out. You people are like train seals. I hear you. So tell me something. So you, you're not that far into it. You've you've really embraced that you've had a low blood sugar. That's scary, and it didn't dissuade you? Can you tell me? Is that just who you are? Do you think? Did you learn something that helped you with this? Did you hear something, see something, do something? What puts you in this mindset quickly? Because it is my goal that everybody feels like you as soon as possible. So how does that happen?

Daniel 43:44
I mean, I think I mean, not to toot your horn too much. I we listened religiously, Melissa started listening first. And I started listening as well. And now I'm way more into it than she is. And I think

Scott Benner 43:55
I've just two things. What's wrong with her? Why is she not isn't?

Daniel 43:59
No, because she's definitely into it. But what happens is I'm like, all drive to school, or I'll be at the airport drive to the school, or I'll be at the airport, so I can listen to it. And I'll be ahead of her. And I'm like, did you hear this today? Actually not yet. And I'm like, Okay, so,

Scott Benner 44:11
so I did not ask this question to hear about how great my podcast is. But please go on and tell me how great,

Daniel 44:16
it's fantastic. So I just think that we've always we've come to I mean, like you can see, what am I trying to say? There's always influenced and there's always carbs. Like they're not we're not all of a sudden going to be out of one or the other. So we can always correct whatever, whatever harm we've caused, and not that it's really armed. And, and for us, you know, like, I'd much rather have that low than the high because, you know, I mean, obviously I don't think Leo is gonna lose a limb or an eyeball, like in five years. But like, there's, you know, there's long term effects that are, you know, just as great If not, you know, greater than short term effects. And I think that having a CGM on him has enabled us to not have to really worry that he's going to go too low. You know, like, my phone beeps in my room all night long. You know, that night. When it goes up above a certain number a low and I, and we don't miss it. So I think that there's a, we just come to realize that we're not going to kill him, you know, we're we're just trying to make life better, we're trying to make it you know, we've we've seen that when he's in that range, and we try to keep him between 80 and 150, but obviously a little bit lower, that he's a happier person, and it makes the household happier. I love that somebody

Scott Benner 45:27
just came on the podcast and said, 150, like, it was really high. You were like, embarrassed, like, you know, it's been 80 and 150. But that 150 I tried Scott, I promise, we try not to go there. I just, it's such a well, no, it's just it's such a seed, then you don't know, because you're nine months into it. But I'm, I'm 12 years into it. People did not speak about this, like this, even in the in the in the last few years. It's only happening and, and I'm gonna say that I was talking to someone last night. And we're gonna do I'm gonna do a joint podcast with somebody which will probably come out prior to this. And when you hear that, she'll be like, I heard that that was months ago. But it was. And so we were talking about what we're going to talk about while we're on there. And I just said, Look, I said, my goal with this podcast is, is to just get rid of the old norms to tell people how important the technology is, if you can afford the technology, if you can afford the technology, you don't have it, in my opinion, you should, that it's that simple. I mean, like, I know, there's personal preference. I understand all that I get that some people don't want the beeping. I trust me any argument you're making in your head right now yelling in your car, or whatever you're doing. I understand. I think you still should.

Daniel 46:36
I mean, you know,

Scott Benner 46:38
yeah. And because I want because you should because it's a bigger conversation. It's how you feel who you are, how your brain works. It's it's you know, is your ankles are sore while you're doing your homework. It's the story I told months and months ago about the woman who contacted me after I helped her with her with a very young child and said that her sister child's on the ground playing the way I remembered her. So she what she was saying was that for a protracted amount of time, her kid just wasn't the same person. Right. And and so, you know, it goes back to to Lynn harbor and talking about her son and saying, Yes, my son passed away, and he had type one diabetes, but I'd rather him have had 20, some amazing years than 40 years, or 50, or 60, or 80. Like, do you really want to live this long, painful, unpleasant life. And and your point, which you're making really well is that if you're careful when you have this technology, and you're reasonable, and you test when you're not sure, and all the things that go along with being safe, you're probably not going to have a problem. And having said that, you probably are too, but so is everyone else with diabetes, if you leave your blood sugar crazy high for safety sake, you're still going to have the same 38 low that everybody else has. It's not, it's not the people who keep their blood sugar at 80 or 90 or 100 that have all these lows. When you understand how to keep your blood sugar 90, you have less lows. It's the it's it's when you're up at 300. And you've gotten to the point where you're like, I don't know what to do. Here's all the insulin in the house. That's how you get low later. Right. You know, I mean, I just got done telling you over the last hour my daughter was low last night and she was really high last night. Now it was a it was a breakdown of the technology that that caused the high. But as soon as she was high I had to over Bolus and it created a low later when she's when she's 130. I don't over Bolus i'd nudge bump little little bits of insulin here and there. I yeah, I can't do it anymore. That's it. Just let's just listen to me. I get no I'm just kidding. Like there's, there's so much common sense in that. And then people most people don't listen to most and most people with type one diabetes, don't hear this podcast, they hear their doctors, and they hear it's okay, it's 180. It's 200. Don't worry, it'll come down. They're young, it won't hurt them long. All the excuses that trust me, they don't know if they're true or not. If a doctor told you it's okay for your five year olds blood sugar to be 250. Because long term, they have data that says that doesn't hurt. I I'm going to tell you right now, you don't want to be the one to find out. That's not true.

Daniel 49:11
So get a new doctor.

Scott Benner 49:13
Because when you find out that's not true. It is too late and irreversible at that point.

Daniel 49:18
So I mean, I just think that just having a dexcom alone makes a difference. You know, some people prefer shot, some don't whatnot, but even just having the CGM I think has made our life easier from the start because we knew and then once we got better control, we could try to keep it down and we're trying to do it and you know, the pump just makes it easier. I think the pump makes his life easier. Yeah. And he really hated hated having lantis. So

Scott Benner 49:41
Dexcom Dexcom is the speedometer on your car. Like let's say that if you went over the speed limit or under the speed limit too far, you are going to die? What would the most important thing be in your life then your speedometer? Right, right? Like it really would be if this was speed and we run a bus and there's a reference no one's gonna get Seriously, that's worse than the matrix. No one's getting the speed. No. But the point is, I'm on your bus on your bus and you can't act. What are you gonna do?

Unknown Speaker 50:13
By the way? By the way, No, I

Scott Benner 50:15
know. I just realized I say matrix all the time, because I really do feel that way. And then I just said speed. And these are both canon Reeves movies. And they are both a huge camera. Reeves fan. I don't know how this has happened. Although those john wick films are fun, but that's not the point. The point is, the point is this damn damn it is that you can't have a disease. That is basically the fluctuation of your blood sugar. If it goes too high, you're going to have long term horrible health effects. likely if it goes too low, you're going to drop that today. That can't be the narrative. And then you tell me, hey, there's this thing that tells me where my blood sugar is. But I don't need it. Like that. What?

Daniel 51:00
Yeah, I mean, I'm with you, Melissa. jokes that like, you know, if all of a sudden we hit the lottery, our foundation, we like providing Dexcom to people that can't afford it. You know, because x comes away all the time. That's how I dream. Yeah. And there's like, no way to do it. Like, I mean, like, I can just find a kid and hand him a dexcom. But like, you know, you can give insulin to infant for life. But I can't give like Dexcom for like, yeah, like, Listen, I

Scott Benner 51:22
mean, there's a barrier for money, obviously. And that is the other side of it. There are a lot of people listening right now. Like, look, I would love one Shut up. I can't afford it.

Unknown Speaker 51:30
Right, right. I

Scott Benner 51:31
get that I really do. But here's what I'll tell you. If I think about this, like this, I was watching. I was on the Facebook yesterday. And apparently, they're these glasses that help people who are colorblind to see colors. And I've now seen two videos of grown men in their 50s 60s who have lived their whole life not seeing colors put on these glasses. Now, apparently, I get from these videos that these glasses must be very expensive, okay. But if you saw these guys put these glasses on, your heart would break, you'd go out, you'd find somebody was colorblind, you'd buy a pair of these glasses, if you had to sell your car to do it, you'd hand it to them. Because it's, it's genuinely beautiful to see somebody have that experience. I think I think this is the same situation. I'm not saying everybody can just dig up 3000 $4,000 if you're paying out of pocket, I'm not saying that. But I am saying that if there's any way for you to accomplish it. It is really, really worth your time. And I did not I listen, I do not mean, I do want to say to people, I don't mean for the podcast to sound like a one hour advertisement for the people who were buying ads, the podcast. But you really do need to trust me and think of it this way. I'm taking the ads from these two companies. Because I'd be saying this with or without them. The reason you don't hear other companies come in leaving ads. And by the way, other people do want to put ads on the podcast. But because you don't hear that is because I cannot speak this passionately about their products. And this podcast is not about making money. For me this podcast is about getting this information to you. So if you ever hear me Take another ad from a different company. You must be like Scott loves that. because trust me you don't make enough money with a podcast to sell out one human being it just isn't. It isn't like that.

Daniel 53:17
Now, we should expect to see an ad for the next Keanu Reeves movie.

Scott Benner 53:21
Well, at the very least that john wick. But yeah, that I would show for I gotta be honest, if you ever hear me start doing movie reviews. Don't for the money at that point. Like, I'll tell you what cars 15 is fantastic. They have not lost the franchise at all. And then we spoke for a whole hour but nothing.

Daniel 53:42
We if I don't if I don't ask you a question my wife will act will kill me. I don't because

Scott Benner 53:47
fundamentalists a couple of times. Yeah, I don't want her to be upset. Go ahead.

Daniel 53:50
We can't we cannot figure out fatty foods for the life of us pizza. We just fight us all the time. Extended boluses I feel like a horrible item. How do we how do we do that?

Scott Benner 54:00
So everyone's different than we know this to be true. So what are you telling me that the boy has pizza, your Pre-Bolus and you're still getting high afterwards?

Daniel 54:10
I'd say we get like high like an hour and a half later.

Scott Benner 54:14
Okay, and then does he get low after you correct it? Maybe not totally. So what does this tell you?

Daniel 54:23
That we're just not giving them enough insulin out front and covering it for longer periods of time

Scott Benner 54:27
more insulin and you needed a covered and the coverage?

Daniel 54:30
So the question at that timing and amount. He He's on such a little amount of influence, right. And so I feel like when I do an extended bill if let's say he eats 50 card, two slices of pizza or whatever that is, you know, so 50 cars will give him maybe maybe two and a half minutes if I can remember off the top of my head. If I extend that two and a half units for four hours. It's not gonna work. Like I feel like I or three at whatever it is. I feel like I need to triple the amount that amount of influence to extended.

Scott Benner 55:00
So you might need more because we listen, there are times when you do an extended bonus, I just had this conversation with Joan, who was on like one of the episodes in the in the first year, we were talking about extended bonuses on the phone yesterday, about about her son, and similar ages. And so when I when I said to her, and what I'll say to you is, if you're going to extend the bolus out, you may need more insulin. So if this theoretical 50 carbs needs two units, two and a half units for you, but you're going to extend it that might end up meaning it needs three units, or three and a half. But if I was you, I would do some bazel adjusting in there as well. So if I if I had pizza, and I saw that I was getting high an hour and a half later. But I mean, How high are we talking about?

Daniel 55:44
I mean, I think he gets he can break 250? You know, 300? Maybe? Not not ridiculous? I mean, right? So we're not breaking the Dexcom.

Scott Benner 55:54
So what you need it like so if I was gonna have pizza in that situation? What's his basal rate point for How old is he,

Daniel 56:01
he's he's I mean, he's got a bunch of different ones, I think the highest one he has is point 357. At night, he tends to drift up at night so

Scott Benner 56:08
that I would double his basal rate, or 100, you know, as much as I could for probably two or two and a half, maybe two hours, right. But I would start it I'd started about a half an hour before the pizza for maybe two or two and a half hours. That way, we've got a nice wall of basal insulin coming, that's going to help with the pizza. And then you need the bolus enough to stop an initial spike. But then stretch the rest of it out over an hour, not three hours or four hours, but just over an hour. So there's still a heavy amount of your Bolus still exists in that time, just prior to the spike. So if you're seeing a spike in an hour, but if you Bolus all of it up front and a half hour into the pizza, he starts getting low. And so you need to just there's that first half hour in there where you sort of need to take half of the bolus and move it to a half an hour later. And then let it and then let it hit him again. Because what's happening is he's eating it, you're keeping the initial spike down, then it's getting into a stomach is starting to digest and it continues to digest and continues to digest and keeps pushing and pushing and pushing his blood sugar up. You have to have enough insulin there to fight it. I think a combination of of a doubled bazel rate and a slightly extended bolus but not a crazy extended bolus is the way to go. Because there's two there's two windows here there's this first window of of spike. And then there's the long than you're seeing long a tail on it. If you control that first hour and a half better than I think the tails not as drastic, and you could probably adjust it pretty well with just a little more insulin. And make sense. That's all that's okay. That's it. That was Did that make any sense? I don't know what I'm talking what I'm saying. No, I

Daniel 57:47
mean, it made sense. And we'll try it but you know, we'll try everything one let me boil it down

Scott Benner 57:51
in a simplistic, very simplistic. Your issue is timing and amount of insulin. Now, good luck figuring out how to fix that, but right but but there is a there is an answer. It just it's not evident to you yet. So keep trying. Keep trying keep moving. Well,

Daniel 58:12
he's a four year old kid he wants to eat pizza.

Scott Benner 58:14
Yeah. Pizza now. Although First things first Today's the 19th of September. I should probably not tell people how far in the future some of these are recorded because it probably sounds weird. But I'm just excited to download the new operating system on my iPhone today.

Unknown Speaker 58:30
Aren't you nervous about your Dexcom though?

Unknown Speaker 58:32
Never nervous. I

Daniel 58:33
was thinking about it. I've never nervous.

Scott Benner 58:36
I don't think enough to be nervous. And that's my that's my superpower my ignorance.

Daniel 58:42
Because I actually it should be it's coming soon. Um, I was thinking about it last night. And I was like, Well, you know, it's gonna they're gonna say that Dexcom is not ready, and I'm going to do it anyways. And then I'm going to get some funky beats and somebody no names mentioned will tell me you should have updated yet. You know, listen,

Scott Benner 58:57
before the podcast. Here's what I will tell you. I happen to know how they do it at Dexcom. And they are going to I would bet I would bet anything and I know nothing. No one's told me anything. But if you upgrade today, that message about hey, this app's not compatible with this operating system. I bet you don't see it two days later, because that's a live thing. That's a live thing they're doing. They have Pete there are people out there right now in California sitting at their desk cracking their fingers waiting. And they're gonna.

Daniel 59:32
Yeah, on a completely side note, the people at Dexcom are the nicest ever. We went to San Diego for vacation this summer. And I just sent a random email saying hey, my four year old T one D blah, blah, blah. Bring him in. We'll give him a tour. Yeah, it's beautiful. They showed us all around the manufacturing and everything was fantastically cool.

Scott Benner 59:49
I've never seen it. I've heard it's really interesting.

Daniel 59:51
It looks like I mean, it looks like you're in like a science movie. Like there's just a bunch of people and like lab coats and there's like hand washing stations before they go on to like this. Free rooms. And you know, it's just a pretty San Diego chill atmosphere. And then you throw in a big science lab. And it's crazy.

Unknown Speaker 1:00:07
No kidding.

Daniel 1:00:08
I emailed them as well asking about the watch. And they somebody called me yesterday, and we had a long conversation about it. And he basically said, in theory, and he used that in theory very loosely, because I'm sure it's gonna happen rather quickly. Once the once they get it ready, you wouldn't even need to carry your phone anymore.

Scott Benner 1:00:24
Yeah, if you had the new Apple watch with cellular, right, that the Apple Watch three or whatever it is. Mm hmm. Yep. You shouldn't, you shouldn't need a receiver anymore to see your data. Yep. And they can even that now think about that, like you're calling it a watch, right? It could be anything like that the watch is an inch square, you could have something in your pocket, that's an inch square that has your array,

Daniel 1:00:44
right? Like Dexcom could just say, Hey, we're gonna put an LTE LTE receiver or something like that on the on the center of the transmitter.

Scott Benner 1:00:52
I think the point is, it's limitless at this point now, right? Right. They've just opened up their API to developers. Now Now if I'm a developer, I can make the tiniest I can make the thing the size of a credit card if I want that picks up that signal or, you know, geez, you could have an app on your computer now like there's all kinds of stuff that can happen so lots of good stuff coming.

Daniel 1:01:14
I joke that I want like a like a stock picker above my TV in my bedroom that just flashes his current blog because I don't have to roll over and see your phone.

Scott Benner 1:01:23
I will say this and I've had this thought about twice while we were talking that as time goes on this all sort of lessons all that like the involvement lessons because you don't need it as much because you're, you'll know, a steadier world like listen, I'm gonna pull up I haven't looked at Arden's a blood sugar all morning, right? I just I've not been once looked at it. So I can go back now five o'clock. Now it's 1115 now Arden's blood sugar's been between 120 and 67 for the past five hours. And if that's not something that I could have said a couple of years ago, and and they'll be an but the bigger lessons, I think for you is that I haven't looked at Arden left the house this morning at 740. I haven't looked at her CGM, since she's been gone. It's 1120. Now, so that will happen for you at some point, you will get it so just kind of it'll be so easy at some point. You won't have to think about it constantly. And then you will look up one day and see that little stock ticker above your television saying I don't need this. It's making my hair gray.

Daniel 1:02:31
I got it. I gotta be done with it. I checked probably three times over here on the phone.

Scott Benner 1:02:37
So I have I'm gonna give you a couple more minutes here. So what what is Leo's blood sugar by the way that Leo's names got to go in the title because that's a great name. But what what is Leo's

Daniel 1:02:48
key is currently 112 and straight across and what

Scott Benner 1:02:51
is he been since we've been on the phone?

Daniel 1:02:53
Uh, it's kind of hard to sometimes it's hard to tell. Could you get that green line up top but his three hour? I'd say he's been in 100 the entire time like the low one hundreds of 112. Since we've been on the phone, right before we got on he had he had gone up, but I think he had snack at school and they don't Pre-Bolus. So he hit 150. right then. And then just started coming down right away.

Scott Benner 1:03:18
The ones where you guys, you guys have a good handle on it. You really do. Yeah, if you're snacking, not Pre-Bolus and going to 150 and back to 112 You're You're doing a great job, but good for you and good. And by the way, try and I've not talked to you for an hour, obviously Melissa deserves some sort of a metal Dan, you're not easy to get along with. Really, it's your spectacular you make I'm gonna feel good all day, about about about this conversation because

Daniel 1:03:45
you can do the next one with her and get her perspective. Yeah.

Scott Benner 1:03:49
Of course. That's not my goal to get to break up families. And so listen, people are like, why is your wife not on the podcast? Like, please do that the other day? What I'm doing wrong, and then I'll feel compelled to stick up for myself and 45 minutes into that you'll be like, I think I just heard two people kill each other on a podcast.

Unknown Speaker 1:04:09
Anyway,

Scott Benner 1:04:10
it has been an hour, I gotta say goodbye. But thank you so much for coming on. I really genuinely appreciate it. Thanks so much, Dan for coming on and telling his story. Leo story and his wife story who we may be made fun of a couple of times, unnecessarily. We apologize about that. Thank you very much dex comment on the pod for sponsoring the show, you can always go to dexcom.com forward slash juice box or my omnipod.com forward slash juice box for more information. And there are always links that are clickable in your show notes right there in your podcast player. Just click right. They're not going to bore you at the end here. Thanks very much for listening to Juicebox Podcast. We'll be back next week and every week in 2018. With a brand new episode coming up. We have a bunch of stuff going on. But one of the things I'm working on is on the pod has a few announcements, and I'm going to try to get somebody back on from the company to talk about that. I've been wondering a lot about Dexcom. Lately, I'm hearing stuff. So I'm gonna reach out to somebody over there and see if we can do a couple of technology shows coming up really soon. All right, guys, have a good week. I'll see you soon.


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#145 Is Your Insulin Compromised?

Scott Benner

Cold supply chain management is important...

Alan Carter is the author of the study, "Insulin Concentration in Vials Randomly Purchased in Pharmacies in the United States: Considerable Loss in the Cold Supply Chain" and he's on the Juicebox Podcast to explain what all of those words mean.

You can also listen to the Juicebox Podcast on: Apple Podcasts/iOS - google play/android - iheart radio -  or your favorite podcast app. Now on Spotify.

+ 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, welcome to Episode 145 of the Juicebox Podcast. Today's episode is sponsored by Dexcom. And on the pod, we'll be talking a little more about both later in the show. And there are also links in your show notes. But at anytime day or night that you get the feeling like you want to just know more, you can go to dexcom.com Ford slash juice box, or my Omni pod.com forward slash juice box. In the beginning of 2018, a study came out that said that they found that insulin can degrade during the shipping process. And it went out in the public and everybody got very upset about I got a lot of notes from you guys. A lot of notes saying hey, can you please find the person who wrote this this study and find out more? And so you know what I did? I found this episode is with Alan Carter, Alan is the lead on the study. The study is called insulin concentration and vials randomly purchased in pharmacies in the United States considerable loss in the cold supply chain. Okay, listen, a couple of things. First of all, nothing you hear on the Juicebox Podcast should be considered advice medical otherwise. But second, don't let that kind of boring title to Alan's paper throw you off here. This is a really good conversation. Alan has done a lot of work for people with type one diabetes over the years, he works for a nonprofit. And he's insanely good at describing this process. without it being let's just say as boring as the title of Alan's paper, which is very good. Even at the end, we'll offer an email address. If you want to read the entire paper, all you have to do is email him he'll send it to you. I mean, come on. What a good guy. All right. You guys ready? This is Alan Carter. I don't know what to call this episode. Because I don't think I can call it insulin concentration of vials randomly purchased in pharmacies in the United States considerable loss in the cold supply chain, going to have to think of something else.

Alan Carter 1:52
I'm Alan Carter, and I'm a farm D pharmacist with 40 years experience working with patients with all kinds of diseases, including diabetes, and I've done some work in monitoring, helping people monitor their diabetes outcomes, using alternative tests such as fructosamine. Besides just blood glucose, I took an interest in why biosimilar insulins might be problematic and they apply in enough patients have had issues with their control that they couldn't determine anything else other than maybe the insulin wasn't quite as potent as they were expecting it to be. And I thought this would be a good idea to compare two different insulins to see how much difference we could find

Scott Benner 2:40
interesting. So on you, and I'm assuming there's other authors on your paper. Are you the lead? Or how does that work?

Alan Carter 2:47
I was the lead as the guy had the bright idea to try and do this and then convinced MRI global to write a grant to look into it further. Just to see what kind of differences might be there since we do analytical work for a lot of government and private clients in drug development and stability testing and various other activities involving toxicology and pharmacology. And I've been doing so for over 40 years here in Kansas City.

Scott Benner 3:23
Wow. Okay, well, so this paper, the title of this paper is insulin concentration vials randomly purchased in pharmacies in the United States, considerable loss in the cold supply chain. And when your paper published, and it made its way around the diabetes community online, I think it really was alarming to people the idea that it's so can you explain just how you started, but it's such a simple concept, but you guys went into a pharmacy and what do you do?

Alan Carter 3:52
Well, I, we have a pharmacy here at Kansas City that I'm the manager of and we support clinical trials throughout the world for National Cancer Institute. And through that I could acquire insulin directly from our wholesaler. And having been a pharmacist in community pharmacy for many years. I also know that there's different wholesalers around sugar yet and I thought well, this would be a good opportunity to watch a variety of launch to see if we could get any detect any changes between lots a lot and different manufacturers to compare to to see if the insulin concentrations would be what would be expected and any other breakdown products that might be there from shipping and handling. Just as a what if type idea and in order to get a variety of lots in a fairly short period of time. I am from different wholesalers I know of other pharmacies here in Kansas City for my years of working with different people. And I arranged to pick up and have purchased some insulin from them and mph and regular our over the counter type insulins. You don't have to have a prescription for them, I could go buy them as a consumer and I which store is bought from different wholesalers. So I managed to collect over a period of time, the different lots and stored them in our refrigerator in the pharmacy till we got ready to move them to the laboratory for analytical work. And our refrigeration systems here are based under what they call Good Manufacturing Practices standards. And we have, which is better than most pharmacies have. We're monitoring our refrigeration and freezer temperatures 24 seven, so that we can tell whether it gets too hot or too cold to last a little better than average pharmacy as most pharmacies just check it twice a day with a thermometer and refrigerator, which should be good enough that we were trying to ensure that we didn't expose it to any unusual handling, once we had it in our hands,

Scott Benner 5:51
right. And when we stopped them think about this idea that this insolence manufactured somewhere that manufacturer keeps it cold, they ship it somewhere, that person has to keep it cold has to stay cold during the transportation process, it probably gets shipped again and again before it hits a pharmacy. Or maybe you have a mail order pharmacy that you get your your insulin farmer maybe you know, whatever, there's just there's so many leaps from the moment, it's manufactured to the moment you get at home in your refrigerator, which, you know, none of our refrigerators are probably even as close to being you know, perfect as, as you would hope, you know, as the pharmacy might be. But there's just a bunch of opportunities for it to get warmer, or to be stored at a temperature that's not optimal. Can you tell me when that happens? What happens to the insulin when it's not kept at the right temperature?

Alan Carter 6:45
Well, as it gets warmer, it breaks down on a fairly linear rate, which Lily in 2003 provided a comment showing it degrades at about 1% a day, if it's at room temperature 77.1% a month, which at room temperature is 77 degrees, but it's linear, the higher the temperature, the faster the degradation rate is, but it'll still have some activity to keep in refrigerator, it loses point 1% of activity per month. So refrigeration would be preferred. But the problem of insulin too is you keep it in refrigerator and it gets frozen. And then that's just as bad as being too hot. I'd even be worse in some cases, like in the NPH. If it freezes, it actually falls out of its suspension and becomes totally unpredictable. And a lot of activity would be and it won't look quite right when you try and mix it after it's been frozen. And I've had patients have their insulin is frozen, because it couldn't afford to buy more continue to use the insulin, sometimes for several months, and have their control just go completely out of whack. Because their insulin is only getting a small portion of his activity because it's been frozen first. So that's that may be more of a problem, a cheat.

Scott Benner 8:02
So there's this concentration of activity that the the insulin has. And as it breaks down, it loses its effectiveness. And and it's funny because I was just thinking about it getting warmer, but now you're talking about if it gets too cold, if it freezes, you have a similar if not worse issue. And so what did you because you and I spoke previously to this because we didn't know each other. And I reached out I told you that I really would like to shed more light on what you did and at the same time. My my my overarching concern is I believe that when people are managing their type one diabetes, sometimes the biggest mistake they make is they they sit around looking for reasons like something doesn't go exactly right. And they'll stare at a blood sugar of 250 for three hours trying to figure out like did I miss count the carbs that you know, what did I do wrong? And you know, part of what they think is maybe it's the insulin and by the time you go through this incredible checklist of things in the waiting, it's always sort of my idea like just more insulin, like if you're higher, just use more, you know, maybe the reasons important and we can figure it out down the road. But in the moment, I get scared that in the moment, people will get frozen with the fear of there's so many variables that they can't figure out what happened and they end up not doing anything. And so as much as I want to shed light on this, I don't want to scare people into thinking that this is one more thing for them to in their day to day moment to moment to be overwhelmed with and so I really do want to understand clearly what you guys learned so can you can you help me a little bit understand that what the what the paper is telling us because I'm not nearly smart enough to read it and make sense of it well, and

Alan Carter 9:41
and it's it is one of those things where you give yourself a dose of insulin and you expect a certain response and you start a new vile, good to monitor your sugars carefully for the first dose or two to make sure that it's Your body's responding to this particular lot the same way it did on a previous slide. And as insulin is in your care and in your pump and getting to body temperature, it may be slightly less effective over time as it's been for three days in the reservoir, before you change it out, so there may be a little bit there. But as long as it's losing potency, if you're using a pump system and continuous monitoring, you'll be able to increase your dose of insulin enough to offset the high blood sugar or alter your diet. And it's just when you use that first dose out of a new vial, it may be more potent than the one you just had for a variety of reasons are being handled. So again, most diabetes patients know that just by experience. And so to not panic, just if but that the other side of the coin is if you're doing everything, the way you've been prescribed, and you're following a same routine, and you get a number that doesn't make sense, and you don't know what you're sick. It's possible insulin is not as potent, as is what you expected it to be.

Scott Benner 11:09
Right. And that's something that we all assume and guess and everything but but what you guys did sort of proved it out, which is so so what did you learn that when you when you bought these different lots from the different distributors. But what came to what came to light,

Alan Carter 11:26
I learned that it looks like the insulin is handled very similar, but from promise you the next that that the supply chain may affect may affect the concentration of insulin that's active in the vial throughout the region, I mean, this is just a snapshot in the Midwest, you may have a completely different outcome and the east or west coast, north or south, it could vary from season as well. So but the average insulin, if it's a little lower and his potency, on average, your systems can adapt for that and you can increase the insulin dose, and you'll do just fine. It's just when you get a new vial, it's significantly more potent than the previous one you've been using. And that can be because you've used the vial too long, you've kept it around. For too many months after you opened it, you're going to potentially have a low blood sugar reading if you give yourself the same dose as you gave on a previous vial. And that's and there is no recognized method or an analytical lab to pull it out of the vial and check and see once in a while just to spot check to see how the supply chain has affected the concentration based on what it was when I left the manufacturer. There is no recognized method for that. And I think that needs to be standardized and agreed upon amongst everybody

Scott Benner 12:52
because you you know the retail side of it and what happens. And so all these steps plus it hits retail. And what ends up happening is you put this insulin in so many different people's hands. And when you leave it to their their best intention, it's their idea of what the best thing to do is and you're saying that that there needs to be rules in place that they have to follow. And this will keep the not only the standard level, but hopefully the quality of the insulin higher and more slow. And I

Alan Carter 13:21
would I would postulate that it's a good idea or the system to have a way of this spot checking product at the pharmacy level, at the end of the supply chain just before it reaches the patient just to make sure any drug is meeting his standard, the minimum amount the FDA says are supposed to have in the label. And his quality is assured because what we're running into is a global supply chain. And the global supply chain introduces even far more risky transportation factors potentially than what we currently face. And now that we're thinking of Amazon getting into distribution of drugs, and insulin could be one of those medications as they distribute cheaply and people need to afford their medication absolutely have to afford it. Well, they reach for the lowest cost possible, you have to make sure that you're the delivery of the drug product to the patient is beating the quality it should meet based on original FDA approved release standards.

Scott Benner 14:21
Yeah. And if you test along increments, so you're saying just you randomly pull a vial from a shipment and it gets tested on site. And if it reaches you at your step and it's not good, then maybe you know, the last step was the issue or whatever but it but at least it doesn't reach people. It's such an odd idea, right that this well intended medication leaves the manufacturer and that along the way, the idea is sort of hands thrown up in the air like well, if it gets to you good, it gets to good and if it doesn't, what are we going to do about it?

Alan Carter 14:49
And that's the that's the concern I've had because I've seen other medications that have what they call a narrow therapeutic range and was Human Being example. It brand name was work great. And we had people switch to the generic and they had issues with bleeding. And nobody could figure out why when I finally analyzed the generic version, and it was 101%, of what it labeled said, You're allowed, plus or minus 5% of that hundred percent labeling, so it was supposed to have 100 milligrams in it, you can have 105, or as little as 95 milligrams is still be considered to be accurately representing what's on the label. Oh, I had 101. And consistently a lot a lot, they did a great job of manufacturing, the brand name that 97 98% level on that little difference was enough to make people have a bleeding issue. So it can be that that close in that narrow and nobody's doing anything wrong. But if you throw in something that's, you know, affected by the supply chain, such as insulin and biologic products, then then we probably need to keep a little closer eye on on what the supply chain impact is to that particular medication because it can be detrimental. Yeah, that makes sense.

Scott Benner 16:08
No, it absolutely does. And it's there. You know, different people are with insulin trying to make different accomplishments like my daughter's blood sugar is she doesn't feel well, right now, she's got a head cold. And her blood, her blood sugar, I can see is 130. And in my heart that's high, and I'm trying to do something about it. But when you get down to these kind of low tolerances, where you're just talking about a couple of points one way or the other, it is very important for the insulin to react the way you're expecting it to. Especially if you're not trying to, you know, you don't want to cause a low. And at the same time, people who are less comfortable being you know, aggressive with the insulin, they're also in a space where the efficacy of the medication could be the difference between 50 and 100 points in these higher ranges. And then, you know, it's even more frightening to make these large boluses. at a higher range. When you can't expect you already, you know, you're already more insulin resistant when your blood sugar is higher to begin with. And now if you can, at least, at least hope that the insulins going to do somewhat near what you expect it to do. And right. I mean, I'll tell you this, that, you know, my daughter doesn't use, you know, we have, she uses an ami pod. So every three days, her reservoir gets changed out. And we fill the pot up to its capacity, which is 200 units. So when I open a new vial of insulin, my house is kept pretty standardly, right? between 68 and 70 degrees, it doesn't get much hotter, doesn't get much colder. Once we open a new vial of insulin, we don't actually ever put it back in the refrigerator. But it's probably gone in, you know, a couple of weeks. And I don't know that we've ever had an issue. I've never think about the insulin as being like an issue. But what do you think of that? Do you think I should be putting it back in the refrigerator? On the pot is, in my opinion, the very best insulin pump on the market. Arden has been using it for almost a decade now it feels like I don't know she was four years old. She's 13. Now that's almost a decade right? And we could not be happier. My daughter's a one C has been between 5.6 and 6.2 for four years. A huge part of that is the technology that we talk about here on the show the dexcom the Omni pod but all of the great adjustments that I make with Omni pod, all the ability I have to give her insulin in situations when other people's pumps have to be disconnected. None of that exists with Omni pod. We can keep Arden's insulin delivery where we want it. And that is how we stay in control of her blood sugar keeping it manageable. You don't I mean not out of control and those spikes and craziness I mean it happens sometimes it happens everybody but I'm talking about for the most part. The freedom that the Omni pod gives us is it's unmatched I don't see anybody else that can do it. I want you to go to my omnipod.com forward slash juice box gonna throw out a tiny bit of information when you do on the pod is going to send you out a free no obligation demo pod. You can try it on and see for yourself now there's there's nothing better than that. It's free that absolutely no obligation like I said nothing no reason not to there's no strings attached. No strings attached the tubes attached. I mean, you see what i'm saying right now? Give it a try. There's nothing to lose it doesn't cost you anything. And I think you might agree with me once you get it you say it. My omnipod.com forward slash juicebox manage your blood sugar the way RP does.

Do you think I should be putting it back in the refrigerator?

Alan Carter 19:47
No. Big Bill man you're also using an insolent analog and we did not use look at the insulin analogs and that should be the next step we look at to the the regular mph or the arm originally. Developed in the 80s analogs have been even when we don't have great information on what its stability is once opened, other than the manufacturer says it should be thrown away within 28 days. So there's some question there, maybe they are more stable. And then when you put it in a reservoir, your body temperature is 98.6, if you don't have a fever, and that could affect how they believe something is over three days, but doesn't appear to be an issue based on everybody's experience. So that that part of it, if you're doing it, that way, you're fine. The only thing I would, you know, anytime you open up a new vial, that's from a different law that you've had before, there is a slight chance that it will have either more or less potency, but if it's a little under it, or a little over, it should be fine. You're not going to have it crash. But if you're running really, really tight control there's some people want to do, then that change maybe enough to trigger a lower low than what you anticipate or a higher higher than what you anticipate based on your dose, because there may be some variance between those files.

Scott Benner 21:07
So it's definitely I'm sorry, okay, okay.

Alan Carter 21:09
But I just was thinking outside the box, if you had some way of testing that vial at home, to make sure that it is, you know, got intact. So there's some had some way of doing a test strip on it that might be helpful in making sure that you're assured that your insulin has not been frozen, or or been too hot at some point in time.

Scott Benner 21:29
Well, that's interesting. So you know, how you when you got the the regular mph in the lab, you know, what testing you did? Do you think a test trip is, is a is a feasible idea.

Alan Carter 21:40
It's, it's a interesting thought and idea, and we have some really cool technologies now, and I have a few friends and colleagues that have fought that might not be a bad approach to think about. So I believe there is some interest in at least the academic world to do you think I mean, so it's a challenge to see if you could find some way of creating a a home testing kit that will let you check once in a while your, your insulin concentration, just to make sure because if you get it in the mail, it could have been exposed to extremely high heat, or it could have been frozen. And you would know that if it had reached a room temperature or refrigeration temperature when you got it somewhere along the line, it might have been damaged. And you would know it nobody would know this wood vials are enclosed in cardboard boxes, and you don't see them until you open the box. Right.

Scott Benner 22:37
You know what I was just thinking? And maybe what you just said made me think is is the answer possibly that there's something in with the shipment, that is an indicator if you've left a range, I don't know if that would that would be if it's a if it's a monitorable. You know,

Alan Carter 22:54
there are temp track devices that we use when we ship products to various trials and things and are used when you have a temperature vertical product, and you can put it in the center of the box, and it will or near the center, and will give you the average temperature that that box has been exposed has inside of it over a period of time until you pull it out and and stop the the tracking. And you can download it onto a computer and see the graph on a Adobe Reader. It's very easy to do, they're not terribly cheap. And they tend to do it on large shipments. But it measures just like the monitors that we use in our refrigeration or anybody's refrigerator. It's the sensor is in one spot and it's giving you the average temperature for the whole refrigerator. Doesn't mean that one corner doesn't get below the temperature or above the temperature you want to set it for. Have you ever put anything in refrigerator and thinking Oh, it's it's fine. Go back a few days later and pull out is frozen,

Scott Benner 23:50
right? But not everything else refrigerators for us. But

Alan Carter 23:52
not everything's frozen refrigerator. So that happens and it could happen in a shipment too. If you've got a shipment of insulin is sitting too close to the cold pack and that cold pack happens to be too cold or the outside temperature is cold and older than anticipated during shipment, it's possible that that vial or that pin that's closest to the cold pack might partially freeze. Now the agitation of shipping and stuff like that should keep it somewhat mixed, but it may not. So this possible that a portion of it might get too cold or too hot, and the rest of the shipment temperature track would show that it stayed within the expected ranges that you need to keep it so those things could happen it'd be just a simple luck of the draw and it could be that our results on what we found were happened to just be vials that got excursions beyond the temperatures they should have been. And if we went back and tested the same did the same kind of test later on a different shipment. They may be just fine. You know

Scott Benner 24:54
what I'm realizing here is the the penguins have already answered our question. You just have to find a way To mechanically duplicated, have you ever seen penguins keep warm and they create that kind of that circle where we're the one in the middle and they walk in and out? Yeah, they keep. That's like Joe Allen, just go figure that out.

Alan Carter 25:14
Okay, yeah, so it's, uh, yeah, we don't want to put any kind of panic into anybody. It's just an awareness, people need to be aware of what might be going on. And I've had patients complain that the insulin that they got from the pharmacy just didn't give them the results that they got from the previous dispensing, and they get a new vial or a new box of pens, and their control shows back up. I've had two patients in the last 15 years that can actually show me their diaries that included their food intake and exercise that I haven't changed anything except I changed, I got the new insulin. And my control started to slide out of control on I was having to use more insulin or are it wasn't uniform and how I was seeing and I didn't change anything else. We think it was useful, and I'm playing well, and you must have been sick, or you mentioned the medication you try any herbal supplements. Did you have any alcohol to drink? Did you know I didn't change anything except my insulin. But we as clinicians, tend to think well, that there's too many variables here. And it could never be the insulin, well, that may be the insulin. And we don't just need to discard that information when it's reported, and the patient may be telling the truth. So they didn't do anything different. And maybe it is the insulin. So we'd like to have some way of uniformly determining whether it was the insulin or not, because I hate just guessing. I don't like to guess I'd like to know,

Scott Benner 26:41
it's worth knowing. And it's worth, it's worth trying to understand that that's for certain Do you think do you think that from the pharmaceutical? And do you think that that is just the cost of doing business? Once in a while you're going to get a vial? It's not as good as the other ones? And do you think that there's just nothing they can do about? How would you like to be able to see your child's blood sugar 24 hours a day whenever you want to? Sounds good. When they're at school at a friend's house it asleep over in the backyard playing baseball, playing football? How does that sound? Do you have an iPhone or an Android phone? Because it works with both? Hmm?

Unknown Speaker 27:15
You like that?

Scott Benner 27:16
I know you do. How about this? forget to share for a second, how would you like to know that your child's blood sugar is starting to creep up or beginning to fall? Or oh my gosh, falling really quickly or rising really fast. You thought you did the right Pre-Bolus at lunch, but all of a sudden bang, it's your blood sugar's flying up, you would know that without an Dexcom. If you're just testing, there'd be no way to see that Dexcom is going to tell you right away, hey, you've told me to let you know when you've gone above this blood sugar. And you are and by the way, it's happening quickly. So here's a an alert that tells you not only are you going up, but you're going up fast. This gives you an opportunity to jump right back into the game and make an adjustment. You take a spike that was gonna go to 300. And you stop it. It's amazing. This is information you have to have. This is the kind of information I use constantly all day when you hear me talking about the things that I talked about Pre-Bolus garden for lunch, eating carb, heavy meals, all that stuff is made possible with on the pod index calm. To find out more, please go to dexcom.com forward slash juice box, or hit the link in your show notes and get started today. If you're not using a CGM, I can't I can't stress enough that I think you should be. Alright, listen, let's finish up here with Alan. And then let's get you back to your life. All right. But don't forget that comment on the pod this week, use the links find out more.

Alan Carter 28:49
I think the manufacturers are concerned because what they want to ensure that you get product is good. I mean that that's how they make their living. They can't be bad at it. Because it threatens their entire business model, you have to depend on them to be correct. And they expect to be correct all the time. But they also have to realize and they do realize that they can't control the shipping systems very well as to beyond their capability. And, and understandably so. And so and again, the cost of making insulin is not cheap. And cost of shipping. Insulin is not necessarily cheap. And if we try to make it more complicated, it becomes more expensive, which is not great for anybody. So how do we how do we practice not without causing a lot of problems. But I think the information should be at least somehow available to the public that they need to think about that Be careful how they keep their insulin and also the shippers and manufacturers need to be careful how their instrument is shipped and handled. But we need some uniform. The biggest challenge we have is trying to find a recognized method to test it and there isn't any And manufacturers haven't shared that information because that's considered proprietary information. They don't want to give that away. But how do we how do we verify this? How do we double check and make sure that's true? That's what I'd like to see come out of this is that we all agree on all this method for a spot check is going to be replicable, every repeatable every time and we can get the results that we can depend on being this is what actually measurement is at this point. And then we can do a spot check once in a while to make sure and fine tune the delivery systems so that maybe we keep the insulin under better control and possibly it is rotating your, your package. So many times during shipment how we do that, I'm not sure. Or maybe by insulating the container a little differently with the cold packs. So maybe we don't get a cold spot in it. Maybe that's something we need to look at. But we need to be able to track the temperature from the moment the manufacturer puts it into while until the pharmacy dispenses it to the patient. And then the patient then can, hopefully, ideally would be able to continue to monitor that vitals temperature changes while they have it. Because things happen when in life happens. You go to on a trip and you use a refrigerator in a hotel and it raises your insulin, oh my gosh, what do I do, I always got to buy some more insulin somewhere. Because you don't know what his activity is. Or you go take a trip and you forget and leave your your thing in the car for 100 degrees outside or some reason that cars temperature gets to 180 inside, which is not unusual in certain parts of the country. Did I destroy the insulin I have on reserve in the car? Those things happen all the time every day? How do we help you determine whether you got to run out and find another bottle insulin and don't have to buy a $500 box of insulin wrenches or pins to replace the one that just got inadvertently damaged? Because accident happened?

Scott Benner 32:00
I always think that I've had this this thought out loud a couple of times. And I've actually spoken to somebody in the pharma company once and said this. I don't know why they don't just and maybe there's a million business reasons why this idea is terrible. I have no idea. But you know, people get mailed or insulin nowadays, why doesn't the manufacturer just get in the business of being that the middleman and moving the insulin directly from manufacturer to the home?

Alan Carter 32:26
I mean, you know, or manufactured likely to the pharmacy so the patient can pick it up. Right. Right. Right. And and I guess in Europe, that's the way it's done. But the interesting, one of the interesting comments has come out of this whole thing was is diabetes management experts are thinking, you know, this just can't be right. And I understand why they would think that way. But I've had response from people that have used insulin. And in Europe, they use a method where it's a pool purchase across Europe, and it's called parallel purchasing. And yes, they get it from the pharmacy. But that supply may have routed through the Eastern Bloc countries where it was originally sent to at a much lower price. And labeled in that language, then they'll re label it in English or Spanish or Italian and ship it into those countries or their citizens use. And it's picked up at the pharmacy sold the insulin has been shipped to one country as a low price, because that country is a hasn't got an economy, they can afford inexpensive insulin. And they turn around and then repackage it and ship it into other countries in Europe as a parallel purchase, though that that country also enjoys a little overpriced. And there's been one report to me that by an individual saying I couldn't get control of my insulin or my diabetes. When this started happening, as a manufacturer to check the stuff I said, well looks like it's within spec. But I was still without control. The government program allowed me to directly get it from the manufacturer, to my pharmacy or to me, and my control returned. But it already had some damage done neuropathies have started to show up because it took a couple years to figure out what was going on. And so that person suspects that that particular delivery supply chain is bad for the quality of insurance that they've got, and they had some adverse outcomes because of that. So there's that's just one anecdotal report, but that's some of the feedback we're getting patients is that the supply chain just seemed to impact the quality of the insulin and it needs to be improved. Taking care of your diabetes is already it's already hard enough like by the variable,

Scott Benner 34:47
but they're big, but the thing to go through that entire process and the insulin you're using isn't effective is just by that is it makes it feel like the The whole thing's just a waste of time and a disaster,

Alan Carter 35:02
you know, and you don't want to do that, right. But at the same time, it's always, I grew up in Missouri, and I work in Missouri, Missouri is what's called the show me state. You can tell me everything's good. But you got to show me once in a while, that it'd be every time but at least I want definitive proof that, that I'm getting what I'm getting, and what's being discussed is true. And so that's kind of what I feel here is this, we just need to check once in a while and have some mechanism which everybody agrees on is a good way of doing it. And and look at the insolent quality periodically, doesn't have to be every lot or every day, but just once in a while check in and then come up with a better way of delivering it so that we can help ensure that it's staying consistent. When it reaches the individual trying to use it. Now, once the individual gets it, it'd be nice if you could monitor it to from home and our ways to do that as well. But because that adds another wrinkle, and but not everybody can afford to do that. Diabetes is expensive. disease to manage. And it's a lifetime. Lifetime lifestyle. And a lot of people can't afford it. To do it properly. That's why we're seeing some people revert back to the mph and regulars because you can buy mph and regular at Walmart or Sam's Club for $25. a vial. That's pretty cheap. And we used to manage people successfully using mph and regular before the analogs came out. It's not the best method day. But if that's all you can afford, that's what you get to go with. Yeah,

Scott Benner 36:34
right. Well, so the said what you've done so far with, you know, tracking the mph in the regular, do you have any plans to do it with the analogs with the Nova Nova logs,

Alan Carter 36:44
and we'd love to get a group of people together to determine the best method to do this and an a and a usable, workable protocol to follow that mimics real world situations, which is what we tried to do with the way we collected the vials, we tried to mimic what you would do if you're a patient about in the pharmacy, or we've got to dispense to you and you got a 90 day supply, and you've kept it in your refrigerator at home. And so in a variety of different lots that you might get over a period of time we tried to duplicate that. But to take that type of concept that we're using a real world snapshot periodically to look at it and using a an agreed upon analytical method to determine how much insulin is in the pan or the while and as much as the intact insolence. How much is the breakdown products probably would be necessary to do a a test to see what the impact is in a person through controlled trial of what to call insulin clamp studies using that same lot to see how well it up what effect it might be on raising or lowering your blood sugar. To do a comprehensive look, at least on occasion, just as an insurance policy I like to think of it is just we got speed limits on highways. Does everybody follow the speed limit? Because there's nobody watching by looking to see if you know the sheriff's two miles down the road and running the radar trap going to slow down well maybe that's what we need to just once in a while check an FB everything this so that the supply chain is being least monitored a little bit. Right now there is no monitoring of the supply chain that I'm aware of.

Scott Benner 38:30
Right. And and in the supply chain if you're if you're one of these steps along the way. And like you said, no one's watching, there's no real onus on you if you want to cheap out if you want to be less safe with it, because once it gets that it's kick the can once it's that far down the road, it's off your shoulders, nobody can prove it was you so

Alan Carter 38:49
and that's why the manufacturers are concerned too is because if it's if it's not quality, and they have to take it back then it's a loss. It's kind of like a counterfeit $20 bill. If if you're caught with a counterfeit $20 bill, you eat the loss, it's it's your problem. There's nobody to pass it back to and manufacturers I think are concerned that they would be forced to take stuff back that they have no control over. It's not their fault that it got exposed to bad temperature. So sort of a What I don't know is, is good for me. If I know too much, then it might be bad for me. And it's not just the manufacturers, whoever happens to have possession of the insulin.

Scott Benner 39:24
It's interesting when you really stop and break it down like this and think about it. There's no it's easy to be upset. Like when you hear something like this, I think people's minds go right to the pharma company, right. Like that's their fault, but it's his fault is is spread out all over the place and maybe not even, it might not even be fault. There could be there could be a link in your supply chain that feels like they're doing everything right and they're not and they don't even know and that's slim, right?

Alan Carter 39:53
It's correct and it is and I we definitely do not blame pharma for this. I mean, it's possible Really remotely possible with somebody who's running really poor quality control? But that's, that's just impossible to believe or even think. But the reality is the supply chain is really the the weakest link in the chain is the supply chain itself, and how do we look at that and address it and correct anything to reduce the risk, you're not gonna eliminate the risk just to reduce the risk that the insulin arrives in your hands as a patient in the concentration that you expect it to be. So that you can use it and rely on its activity. And understanding that there's going to be absorption differences, day to day based on your site of injection, there's going to be differences in your activity and your caloric burn or day to day, our our there are variances in diabetes that you just cannot address. But if we know the insulin is within a certain range of potency, when you get it and you know how to take care of it when you're at home. And you're monitoring that too, then you've eliminated just

Scott Benner 41:03
one last factor. No, yeah, you will, you know, I mean, if we're being fair sitting here talking like that, the pharmaceutical companies have the power, they're the ones paying the shippers, they can they could put constraints on them and say, Look, you have to do this, this and this, or you don't work for us anymore. And I'm assuming that's a fairly large account that these people would not want to lose. And so I you would think you could strong arm the shippers to do the right thing? Because that is once you do that you raise the cost. Yes. And are already complaining about the cost now,

Alan Carter 41:38
right? Oh, that's the other side of the coin is is to do it right? On a cost more money? Mm hmm.

Scott Benner 41:45
Yes. So we're stuck in a perpetual circle of well of what was good enough and at what price?

Alan Carter 41:52
Right. And that's what we like to dis determine what's good enough. And right now it doesn't look like based on art data, it may not be good enough, can we improve that without making it ridiculously expensive. That's the goal. And could be used now with technology we could get. They could put a temperature tracking device that would work either on every box, or in every shrink wrap group of insulin because they usually come in a package 10 vials in a shrink wrapped package. If you buy enough of them. That's all it'll show up for you to help in shipping and packing. And have a monitor at least in that level. And how big a level Do you keep keep that monitor and monitor it from A to Z point A to point z. And ideally, if you could move that monitoring capability to to the patients, and then it would help them keep track of their insulin temperatures during everyday life.

Scott Benner 42:53
So what did you do when you when you finished the paper? Did you pass it on to industry? or What was your you assume he know that it exists? When

Alan Carter 43:01
we ran this, we were trying to see what other differences we could find is one we weren't looking for a concentration insulin specifically, we want to see how much different the two biosimilar products because they're not technically while similars. But in reality, that's what they are they NPH and regular been made for years by two different companies. And they're made different ways. But they're supposed to be human insulin at 100 units per milliliter concentration. So we thought, okay, it's human insulin. And there may be slight differences in what else we might find in the vials. Let's look but the very first step is to identify the insulin, because we have a USB standard to do that with and we can make up a USB value of 100 units per mil solution treat it the same way we do the insulin withdrawal from the vials for injecting in a machine LCMS device to measure it, or we should have a known standard and then measure the house against it. And we got the data is like what happened here doesn't match what we expected except one wild came really close to what we thought our target should be 94.2 that's, that's within a sneeze of being exactly what it says is supposed to be on the vial. So we were trying to figure out what we might have done wrong. And as we tried to dig into that data, we found it there is no documented way to look at insulin in a vial to check its true concentration that we can find manufacturers have it but they don't want to share that information. And then we tried to figure out who would be interested in looking at this information to see what it might be. And really it was kind of like a hot potato. Nobody wanted to touch it. And I understand I mean, it's so controversial. You don't want to blow things up without some kind of way of determining it. But since there is no documented way that we know of to cross check all this stuff. It's just original data. And we'd like to see it move forward with additional testing, using methods that people agree on is the best way of doing it. And checking the analogs, probably next, but we need to make sure we're all on the same page before we start down that path. And finding somebody to fund that has been a challenge. And as it is a hot potato, nobody really wants to own this.

Scott Benner 45:23
Yeah, who wants to prove that that might not that that might be true, also, that it's, it doesn't benefit anybody, anybody who you can get money from to do the study? That's for certain. Yeah. Well, Alan, I appreciate you coming on and explaining this to me, because I saw, I saw your paper, it came across my feet a couple of times. And I looked at it and I thought, Oh, that is really interesting. But then I actually started getting notes one day from a bunch of people who were like, Can you find out more about this? And I said, Well, I can try. So I appreciate you responding so quickly. And getting on so quick. We're actually going to put this up next week so that people can can listen to it and try to understand better, is there a place I can point them to get the full paper that they can read? Or is it available online as a full text, it's

Alan Carter 46:09
available as an abstract online, it does journal diabetes, science and technology. And that requires a subscription. For individuals who want to see it, I can release it on a person to person basis, which is kind of how I got started out in the general public. And I just can't release it in general, because that violates the journals agreement. So I would be willing to release it to individuals if they want to read the entire paper, which is the idea that this further use their personal use not for general release to everybody. And you could reach me at my email addresses on that contact information. Sure, I'll put it in the show notes show

Scott Benner 46:55
anybody who is anybody who really wants to dig into the into the text, there'll be a link in the show notes, you can contact Alan, he'll, he'll send it out for you. And, and as long as

Alan Carter 47:04
you don't share it in public, it'll be up. I see this as an issue that's going to take all of us to solve. It's, it's not, it's not something that one person can solve, we just need to find the best way.

Scott Benner 47:16
So at the end consumer, if they want to voice their concern, who do you think they pointed at?

Alan Carter 47:23
And well, my guess would be the FDA would be the first official group to point their concerns to and ask them if there is a way of, of doing a better check of the supply chain to ensure that the product received at the pharmacies are good, and then periodically at the dispensing point of the patient to making sure that what the pharmacies because we got no way in the pharmacy level to figure out whether it's good. We just have to assume it is just like everybody else.

Scott Benner 47:55
whole conversation and yeah, discretion. Yeah, this whole conversation just makes me think over and over again about the insulin that we're sending to third world countries that help like what, what shape is that showing up in?

Alan Carter 48:08
Well, and the other concern is, is when you get to reimportation drugs. And that's a big issue, a Canadian Canadian drug supply. And we can you can do that. But the FDA says that's not safe. This is why it's not safe as it can go to a third world country. And this has happened before, and it gets rerouted back into the general supply and then sent back into the United States or into Europe or into Australia that was never intended to reach here and who knows where it went and how much sat there. And that's what you get into with a global supply chain. You need some way to monitor the quality of that product when it reaches the end consumer.

Scott Benner 48:42
Okay. All right. So well, I wish you luck, getting funding to do it. To continue the work, I think it's really important. And I wanted to thank you very much for shining a light on it. It's obviously something we've always all this always a thought, but it's very interesting to see somebody to prove it out in the real world. So thank you very much.

Alan Carter 49:03
I thank you for inviting me to be on your program. And if there's anything I can do to help you or anyone in the diabetes community, please feel free to reach out.

Scott Benner 49:13
Thanks so much, Alan. Thank you. Dexcom Thank you, Omni pod. Thank you t you the listener appreciate every one of you. I really do. Congratulations to Amy and Jennifer for winning my last giveaway. It was a big grab bag full of bold with insulin stuff t shirts and stickers and magnets and everything. Congratulations guys. Your gifts are coming soon. Also, stay tuned. There's a lot of new news a lot of new news coming from Omni pod and we're gonna have some people on for Omni pod to talk about it in the coming weeks. We have a ton of great interviews coming up and there's always you know timely stuff like today with Alan which will slip in you guys. If you're not subscribed, please subscribe in your podcast catcher app, whichever app you're using, hit subscribe. That way you don't have to count on you know me putting it on social media and it is actually one My dream is where you guys all subscribe and I no longer have to put anything on social media which would be a wonderful, wonderful respite for me. So if you want to do something nice for me just subscribe, you make less work for me on the other side. Again, the show continues to grow. It's doing fantastic. And it does that because you guys are sharing. So thank you very much and please continue to let other people know about the Juicebox Podcast. I'll see you guys next week.


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#144 You Have To Keep On Truckin' with Type 1

Scott Benner

Also Scott is an ugly crier...

Nickie and Scott talk about type 1 diabetes, fear, celiac, growth issues and a whole lot more.

You can also listen to the Juicebox Podcast on: Apple Podcasts/iOS - google play/android - iheart radio -  or your favorite podcast app. Now on Spotify.

+ 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
This is Episode 144 of the Juicebox Podcast. today's podcast is brought to you by Dexcom and Omni pod, you can go to my omnipod.com forward slash juice box, or dexcom.com forward slash juice box to learn more, there are links in your show notes.

This episode of the podcast is with Nickie, Nickie is the mother of a child with Type One Diabetes. She contacted me and want to talk about how she overcame her fear, just fear in general around type one, very much towards the end of the episode, this one's a little longer than some of the other ones. We learned that will has an issue with growth hormone related to maybe celiac disease. I'm not 100% sure I'm not a doctor, as you know. But, you know, this one sort of seems like it's ending when it kind of picks back up again. So kind of make it to the end. Plus, if you're one of those people who loves to hear Arden's lunchtime boluses This one was actually long enough where you'll hear the bolus and the progress of it all the way through to the end. And you can actually find out what our blood sugar is at the end of the podcast. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before being bold with insulin. I think the warning maybe makes a good t shirt. I see you guys talking about this on Facebook and social media more than anything else. Somebody asked me a question. They're always like, I know this doesn't constitute advice. And then medical or otherwise, then there's always a lot of smiley faces. So I appreciate you guys listening. Alright, let's get right to Nikki.

I appreciate you contacting me and one to one to do that. So thank you very much. Oh, you're

Nickie 1:46
welcome. I just like I'm new to the podcast, and I've been getting so much out of it. And I heard you say that one day. And I'm like, you know what I would love to connect. And you know, I love one of the things that you said recently was like, I can hear myself learning. As you were like revisiting an old podcast, like you're kind it was your hundredth episode, and you're revisiting like your 11th episode or something like that. It was on like, the fear. And that's seriously like, I finally feel like we're, we're coming out of that, because we're new to Dexcom and everything. And that just changes everything. And I just love that you said you can hear yourself learning and it's like that is life like that is I just relate so much to that because it's it's this is a crazy disease. But yet, the lessons that you learn along the way are not only like with diabetes, but with just life in general. So

Scott Benner 2:38
it's funny, because there's these moments when, you know, I'm just relating our experiences. And that's, you know, that's easy. And sometimes I there's these are things I've known for years or things that I figured out a long time ago. But once in a while I answer a question. And if you could hear my inner monologue, you'd, you'd hear me thinking, Oh, God, I can't believe I didn't know that. So like, how did I just figure this out? Now while we were having this conversation? Oh, my gosh, totally. Yeah. But the conversations are so how it happens, you know, so I'm thrilled. So I'd love to, I'd love to know a little more about you know what it's like to, to find the podcast and just sort of you know, how it strikes you because I I don't understand that part. I want to hear a little bit about you know, your life and what's going on and everything else.

Nickie 3:23
Hi, my name is Nikki Kerrigan and I am a mom of two I have a fun turning 16 on when are Thursday this week, and then I have another son will who is going to be 13 in June and he has type one diabetes. I'm married to my husband. We've been married for 17 years. He's a wine distributor. So it's kind of awesome. And I own a Fitness Studio in our in our community. So we are a really active family and we just love to connect and hike and do a lot of fun family activities.

Scott Benner 4:00
And so your son will has type one. He does. He was diagnosed How old?

Unknown Speaker 4:07
He was five.

Scott Benner 4:08
Okay, so eight years ago. Yep. I just ruined the joke that I don't know how to do math. Okay, nevermind. Wait, hold on. 5678. Got it. Okay. So five years olds are really kind of weird space because he he had he just started kindergarten.

Nickie 4:26
He actually we haven't been a five year program. So he was born in June. And so we decided like, what should we do? And I'm just so glad he was in that five program like in retrospect, because I didn't have to send him away every single day. It was like three days a week after the diagnosis. And that was easier on mom and dad. I have to say,

Scott Benner 4:45
this is like preschool.

Nickie 4:48
Yeah, it was like a like a pre k kind of thing.

Scott Benner 4:51
And so he was in and out of the house. But not every single day as he was diagnosed. Exactly. It was like a two hour thing.

Nickie 4:59
I've gone Three days a week.

Scott Benner 5:01
Now, did you? Um, did you just sit outside of it? And? or How did you?

Unknown Speaker 5:07
Yep, exactly what I did. Tell me

Scott Benner 5:10
about that a little bit, because I did it too. And I've never really spoken about it here before. But But how did you see you? Just tell me about it. That's fantastic.

Nickie 5:17
Sure. So, um, first, when when we got back, we he was actually diagnosed over Christmas, which is kind of crazy. I know, there was another podcast recently about that. And that was that struck a huge chord with me, because pretty much a lot like our story, we were actually let out on Christmas eve of the hospital. So we were a little bit before Christmas, but so we got home from the family, we were on a family vacation in another state got home. And we were like, Okay, we got to, like get back to real life, we've got to help, we'll see that this does not stand in his way. And so we first we talked to the teachers and just showed them like how to deal with Lowe's and show them how to check blood sugars, and like will was already you know, pretty acclimated to that. But you know, we just showed the teachers and I literally every day, the first day, I almost lost my mind, like walking away from him. And, you know, just thinking, Okay, you know, two hours. And so I would just sit in my car, and I would listen to music like I was, I remember just like having a CD player in my car. And I would listen to my black eyed peas CD and just sit there and like, wait, and sometimes I would drive like around a little bit in the area. But I was always right there. Because that was probably the most heart wrenching thing to turn your kid loose into the world, when they have this, this disease that feels so out of your control, like, there is nothing that you can do. You know, and

Scott Benner 6:44
even you don't really even know what you're doing. So I was always struck by the amount of things that I imagined I didn't understand. And, and we did the same thing with Arden was diagnosed when she was two, but my wife's like, you know, maybe we should just get her out of the house a couple days for like preschool to get her kind of ready for for, you know, for kindergarten, and I was like, oh, okay, you know, there's this place not far from here she a couple hours, like you're saying, and they'll you know, they'll mess around and do crafts with them. And you know, stuff like that. And I was like, oh, okay, that sounds right. And, you know, explain the whole thing to the people. And they're like, Well, look, you know, if you stay we can do it. I was like, Well, a few. All right, I get okay. And you know, and I was like, Why don't want to hang right over a shoulder. And so I'll sit I did the same thing when I sat in my car. And I came back in at like certain intervals and tested our blood sugar for things and, and it was a, it was just like, there's that uncertainty of like, you know, what's happening with her right now? And how do you like, let go of that. And, and it took a really long time. But you sound like you were really very positive when he was when he was first diagnosed about not letting anything get in his way. I'm wondering, is there any point where the momentum of your positive feelings Did it ever find resistance? Did you ever have trouble maintaining that, that feeling?

Nickie 8:00
Oh, my gosh, yes, a lot. And you know, it, we've always wanted to empower him. And we've always wanted to empower the people around him to feel like they can help and that if they make a mistake, we can fix it, you know, like, all those things. But at the same time, like all of that, and even educating family, educating friends talking about it, it's still is so hard. I mean, there are days that I just remember, like, I remember just collapsing in my kitchen in full tears, because just trying to hold that up, like, you know, you almost like will yourself to a place you want to be before you're really ready. And that's kind of what I felt like I was always doing. And then it just hit me really hard. And I just remember crying and just like really struggling and then thinking like this is not productive, like I have to get, I have to really start to get myself to that place. Because he he needs that for me, he needs to see that from the front. Always. I mean, I didn't let anybody see me or have that breakdown. That was a private moment for myself. But, you know, so I just started to talk to the social worker at the clinic. You know, even just like when I when when I was first diagnosed, I was teaching aqua aerobics at a,

Unknown Speaker 9:16
at a

Nickie 9:17
fitness center in a community, a small community, not the one I'm currently in. And it was to a lot of elderly people. And I remember going back to work after his diagnosis. And just the things that they would say to me, were so hard to you know, it's like the same conversations and the same questions like oh, how's he doing? How's his blood sugar? Is everything under control? And hearing that question, is everything under control? It's like, um, what day are you talking about? Because it is every day is different, you know, and at that point, we were just doing injections and you know, you don't have a lot of control when you have injections and it's you know, Also new to us. And I remember just having this sense of overwhelm, and just constantly feeling like, you know, yeah, I want to be this this really positive and like, I want to empower him. But then having those conflicting thoughts of, can I just keep him in a bubble? And can I just have them like with me at all times? And can I always have them in my view, I mean, it feels like sometimes I walk that tightrope, just as a mother and, you know, a caretaker of this, but I know what the right thing is,

Scott Benner 10:25
you know what I mean? It's funny, too, because the feeling that you want to keep them really close to you, is, you would think that hearing from the other from another position that you know, if it was those ladies at the, you know, the class maybe that if you wanted to keep her, we keep well, close to you, it would be so you could do a better job. So get this Phantom control that somebody is talking about, except it doesn't really matter. That that was your fear, like, right fear is what wanted you to keep them closed. The idea that if something happens, I want to be close by. Yep.

Nickie 10:54
Yeah, constantly. And, you know, like, what, what I have been reflecting on lately, because I've really, my attitude has changed so much since we've gotten the Dexcom. And what I feel like, you know, just I've had this like, kind of epiphany or lightbulb moment. And it's like, when in fitness, we talk so much about your why, you know, your why, why do you want to be fit? Why do you want to be healthy? Like what is healthy even mean? Like all those things, like we really take deep dives, we don't accept just healthy, I want to be healthy for my kids. But we don't accept that. Right? Like, that's like, Okay, tell me why, you know, what do you want to be for you and all those things? And it's like, why do I not turn that lens around to myself with diabetes, and what I realized is that for many years, I was driven by fear, you know, like, I was driven by, I don't want something bad to happen. And so I will let his blood sugar went a little bit high. Or I will like say, Oh, yeah, that's okay. Like, you know, and just maybe under dose something, just just to be like, okay, like, at least he won't go low, or at least he won't be super sky high overnight, you know, just like finding that middle ground where I was letting him run a lot higher than I should have. And now like, you know, I'm looking at that and going, that's not the Y, the Y is not fear, the Y is not fear. If I focus on the fear, then I'm always going to keep him in that higher range. And then we're going to start looking at down the road, we're going to look at the health problems that are associated with that. Why don't I focus on let's avoid that, let's put you let's make the why about your quality of life later in life.

Scott Benner 12:33
Yeah, and I was just say that I am. I'm always really, um, there's, there's not a lot of opportunities for me to feel pleased with myself around the diabetes stuff, but when, you know, there's days have gone by like this, you know, it's like softball seasons like in full swing. Now, so Arden's weekends are spent being active for six and eight hours a day. And she inevitably gets lower, you know, in the evenings after that. And when she goes to take in a bunch of food, not just as much Oh, actually hold on a second. People love this. I don't know why. But actually, I think I do know why. But Arden is texting about her. Her Bolus for lunch. So let's do that. We'll do it together for a second and then we'll get back. Yeah, it says she says it's lunchtime. I know she had gym today. She's going to eat in 15 minutes. She was bit she's been really steady at 96 for the past hour and 15 minutes, but I lost her signal about eight minutes ago. So I think she's still 96 bonus and asked her if she feels Okay, she'll say yes. Now while she's thinking half a bagel butter, that's what's in there today. yodels no yodels thing done, I don't know. 35 carbs. I actually looked at the carbs on because they look so amazingly sugar efic. And so then there was grapes, and broccoli and chips. So 30 540-550-6070 carbs, the drink doesn't have anything in it. And I put in some pretzels, like 75 carbs. So I'm gonna say

Unknown Speaker 14:09
I'm gonna say this is a nine unit situation. And a bazel Temp Basal. Here we go. Increase 50% for an hour.

Scott Benner 14:23
I always have to send the Temp Basal first. If I send the Bolus first. she'll throw the Bolus in and I go No, no Temp Basal shoes. Why wouldn't you say that before the finale, I have to wait for the balls to finish to put in. I can feel how irritated she is with me through the text message. Totally very, very careful to do that. Now the nine unit bolus, she's 96. So I don't want to give it all to her right now because we have 15 minutes ago. So let's extend it. And we'll do

Unknown Speaker 14:53
I don't know four units now. Seems like a lot. Let's do 30% now and the rest Over

Unknown Speaker 15:07
here we go. Let's see how it works while we're talking still probably. So yay, good.

Scott Benner 15:16
We say goodbye to her. And then I can get rid of this tax program on my computer right now. And then I should get her signal back from CGM. Okay, here we go. All right now here's the biggest problem me remembering what I was about to say to you when this happened. Hey, this ads for Omni pod but before I begin, there's been a big announcement today surrounding Omni pod. And for those of you who had effects, I know this has been a longtime issue for a lot of people. And I want to just let you know, Medicare Part D is now going to cover Omni pod. If you want to know more, I'll put a link in the show notes for it. But I know that is amazing news for those people who have been waiting very patiently and actually advocating on their own. So congratulations, everybody. Medicare Part D is now going to cover on the pod. Now, I'm running out of ad time. So if you want a tubeless insulin pump, which of course you do, on the pod offers a free, no obligation demo pod, something you can bring into your home, and just give a try to see if you're comfortable with it. If you are then you can move forward. If you're not comfortable, you don't have to do anything. And there's absolutely no obligation. So it's worth a try. You go to the link, Miami pod.com forward slash juicebox. You put in seriously the tiniest bit of information about yourself. And this demo pod is going to show up at your house and you can give it a whirl, see what you think. Not gonna push it too hard this week, I'm not gonna tell you a big story about how great Omnipod is, although I have stories, I could tell stories. But for this week, I thought knowing about the Medicare thing was such a big deal for most people, I want to use a little bit of this time for that. For everybody else, my on the pod.com forward slash juicebox. To find out more about the demo. There's also a link in your show notes. And don't forget, if you want to learn more about the Medicare announcement, go to Arden Stay calm. It's right there. I'll also put a link here in the show notes. So you'll remember that before the ad and before Arden's Bolus for lunch, I was about to say that there's very few opportunities for me to get really pleased with myself around diabetes. But here's one of them. This is the rest of that job. So she's getting low, you know, or low ish or sticking low. And when the difference between here's some food to help the low blood sugar comes up an actual meal at a weird time of day, like later at night or something like that. I'm pleased with myself when I have the nerve to Bolus for that food, even though she's been low. Yeah, like you know what I mean? Because that feels like not being afraid to me. Yeah. Now, every once in a while, that could backfire. And maybe you have to catch it again. But for the every once in a while where it backfires. And she still stays low. There, you're giving, you know, you're trading that for every other time where her blood sugar would have went up to 300 I would have been like, Oh, I was too afraid to do anything cuz she was low earlier. So I didn't and now look what happened. And now four hours later, I can get it back again. I just there are two times I feel completely empowered. It's that and you know, aren't you know, everyone gets low, like, like, frighteningly low once in a while. I would say it happens to a couple of times a year. But when it happens when she's like, you know, 40 and her blood sugar's falling, and she's eating, you know, the equivalency of everything in our kitchen. That fall stops and I see the Dexcom bend back up again. I never feel more in control than when I Bolus for the food when she's still 50 Yeah, and I'm just like, oh, wow, I this is how I know I'm doing it. Like, you know, because because I trust everything about what diabetes has taught me in the past. I've stopped the fall. I've you know, she's taken in an incredible amount of food that food is going to start bringing her blood sugar up, maybe I don't hit it carb for carbs, you know, unit for unit. But I'm going to give her most of the the Bolus that I know she needs for that food. And, and when that happens later, when you stop a crazy fall like that, and 45 minutes later, your blood sugar's 110. That feels amazing to me. Like oh, yeah. And I feel like I've done something. Which is that's my equivalency of like a roller coaster. You know, other people would have to go to Six Flags for that feeling. I get it right there.

Unknown Speaker 19:29
I am with you. I

Nickie 19:31
know I'm looking at our decks right now. And it's kind of cool because like I actually sent well a text he was at 74 and steady and I was like, you're not going to eat for a while. I'm like, why don't you go down to 15 grams and let's just see where you're at. And like, it has now come back up to 80 and steady so that's gonna take them right through to lunch. So it was perfect because it was it was going down. So it was like, you know, seven

Scott Benner 19:53
inches 74 you were falling because that because falling. If he's 13 then what's the way about 100 pounds one way or the other 90

Unknown Speaker 20:02
out of a peanut, he's 71.

Scott Benner 20:06
So he says 70 pounds. So you just need to 15 carbs, if he was steady at 74 would have pushed him higher. So you that's how you feel like you know, there were still a fall coming.

Nickie 20:15
Yeah, yep. Excellent. So awesome when you make those little tiny victories and it's like, I am so glad that he's not like, you know, it's just nice to see that 81 and steady. And then also, like, here's where I feel like I'm winning, too. I'm not panicking at 81 and steady, where I used to, I used to be like, Oh, my God, he could go low, he could go low. What if he goes low? You know, somebody's gonna walk them down to the nurse or, you know, we, I don't know, you know, just all those little things like now I just feel like this sense of calmness. I mean, it's been years. I mean, we have had, it's not like, we're brand new at this, you know, like, I mean, I it's taken me a long time to get to this place. And I think, when you have the right tools mean, we have the Omni pod, and we have the Dexcom. And we've had the Omni pod for several years, but we are new to the deck. And that's something we change doctors, and the doctor was just like, I'm like, Why do you not have that x? And we're kinda like, I don't know, you know,

Scott Benner 21:11
so no one said, I everything that I've learned about I learned about from somebody else at some point, you know, and you just one day, you're like, what somebody is using a glucose monitor? What's that? And then, you know, a little bit of googling later. And I said, oh, wow, we're getting this. Yeah. And and so well, you know, it's interesting is that you talked about walking around at 81. And feeling comfortable now. I am at 81. In my mind, I'm starting around like john travolta and Saturday Night Fever, right? You know, like, I'm like, well, we are killing this. I'm, I'm the I'm the big stepping foot guy on the keep on trucking. mudflaps from this, just like, look at how we are killing this. And could she get low? I mean, she got the Dexcom she started drifting down, we'll do something about it at once crazy at one is such a plus, you know, if you test it, it was probably like 90 anyway. And so you're just like, this is such an amazing feeling to lose the fear. And I'm gonna, I'm gonna tell you a story from last week, excuse me, that will, I think just magnify what it means to be without the fear completely. So this seems to happen. Like once a year Arden goes to school, and their technology at school just completely falls apart. So she walked in the building, I dropped her off. And I got home and her blood sugar was, I think I dropped her off in the morning. It was like she was a little over 100. And I didn't have any feeling to think that she would go higher, but we had, she'd eaten some food on the way out the door. And so I bought a sport. I was like this. I remember thinking this might be a little too much. But yeah, that's her. And so she goes into the building. And I have this like conscious thought like a half hour later, like, Oh, well, I'm not hearing anything from the Dexcom. This is great. Maybe we really did hit with this food. It's you know, she didn't go up over 130 or I would have heard, I wouldn't have expected her to get low. But I know if I did something wrong, I might have expected her to get to drift off. And so no beeping This is great everything. And then I just I start going about my business and I put my stuff down and I'm wearing my Apple Watch. So I figured you know, I don't need my phone right on me. But I didn't realize I i muted my Apple Watch. And so I saw I didn't get any. So about an hour into it. I was like, wow, I must have really just perfectly gotten that bolus, like you know, and then I was like, maybe I didn't and let me look. And so I looked and I there was no signal she I did not see. I couldn't see her next calm at all. And so I was getting the no signal thing after a half an hour but I didn't feel it on my watch. And so now I text her and the text doesn't go through. And oh my gosh, she's in like she's in like the Bermuda Triangle of of cell signals and Wi Fi right now something had to happen at the school, but I'm still just like, Okay, let me let it ride a little bit. I'm not going to go crazy. I'm not going to be the guy who calls the office like I can't reach my daughter, so I'm just like, it's gonna be fine. She'll notice if she gets low. You know, Baba, she still got her her. Their CGM like I don't have it right? Yeah, even though she's 12 and if I'm being 100% honest, I think that thing could actually scream at her in English you're about to die and she might literally just ignore it.

She's like wow, why is my phone calling me I'm gonna die. I guess I could look but probably not. And yeah, so like I tried to text I can't get texts to go through a little while later I go to my fallback idea. I'll call her sometimes when you it's crazy as it sounds it seems like when you send a different type of signal through the through the system sometimes it could pick up one and not the other phone call goes right to voicemail like huh, so I send that find your iPhone signal like this thing is the Superman of all signals. This one bursts through everything. That didn't work. But I also had a breakfast with a friend so I'd been driving to to this restaurant and go out to eat three times a year. I've a very exciting life. And so and so I was like I wasn't gonna cancel with my friend. You Because I couldn't get through and we're sitting there and I'm trying to tax everything. And finally I said to her, I'm like, Look, I can't wait any longer if she's low. It's going to start happening right now. So I called the school and the front office, voicemail picked up and I was like, Wait, does this happen? You know, like so now. So now I have to call the nurse's office because I know she'll pick up but if you listen to the podcast, you know, Arden doesn't go to the nurse doesn't know the nurse. The nurse has no goings on, you know, there's no interaction at all with Arden's blood sugar. And so I was like, hey, and I said, Hi. I said, Here's what's happened. I said, the cell service is down in the building. And it seems like the Wi Fi is not working. I need you to get Arden and bring her up because I have no idea what her blood sugar is. And she could be allowed. And he and she was Oh sure, sure. She has her come up. And my phone rings a couple minutes later. Arden is here. We've tested her blood sugar. She's 56. And I was like, Okay, I said, um, I see her on the phone. But what do you want me to do? I'm like, I'd like you to put her on the phone. And so, like I said, How you feel? And she goes, I'm alright. I was like, Okay, I said drink a juice. Wait, wait five minutes and go back to class. And she's like, okay, and I can hear her saying to the woman, my dad's just gonna, we're just gonna drink this juice and she's so mature. While she's saying it to her. It wasn't like a child echoing or father or anything like she she knew that the phone call was just art and knew the phone call was just to stop the nurse like from being like, Oh my God. And so Arden's like a very calmly Arden goes, Hey, I'm just gonna drink this juice. And I'll head back to class in a couple of minutes. And give me the phone and I hear the Hi, I'm gonna keep hearing retest in 15 minutes. I was like, Listen, you could do that if you want. You really don't need to. She's not 56 and falling. She's 56. And I thought this juice is gonna bang her right back up to 85. And she was but she's going to gym next. And I was like, yeah, it'll be fine. And she's, she's like, No, I'm gonna keep her. I'm like I said, you know, you should do whatever you want. Thank you very much for help. I was very polite and everything. And she's like, yeah, so a few minutes later, not 15 minutes later, Arden's texting me, Hey, I rebooted my phone. It's working again. I was like, Okay, great. And she's like, um, she's like, I want to get out of here. And her blood sugar was like, 64 diagnol up, she's like, she won't let me leave. And I said, just I texted her, I was like, just make her happy and say a couple more minutes. And she was like, okay, okay. And then she laughed, and she went off the gym, went to gym, and then we Pre-Bolus for lunch, and she was off on our way. But I'm gonna tell you that if that happened to me years ago, I would like at the school at the front door like banging on the front door yelling my daughter's dying in there. And and so the, the process that we've gone through that we've talked about in the podcast of you know, figuring out that you know, the fear was the thing that was holding us back from her going to school and or overnight sleep overs and all this stuff. I also eliminated the fear that I just there I mean, 56 is low. I'm not telling you it's not low. But I'm I wouldn't panic at 56 not I mean, 56 and falling I would have been a little more like short with my words. I've been like, Look, you need to have a drink of juice. Let's shut her bazel off let's I would have had more to do. But at 56 and stabilize like she's going to drink that juice. Her blood sugar's go back up in a couple minutes. And huh. But if you could have heard the nurse who lives in a different world with the other kids who have diabetes there, she was like, Well, you know, I'll put the process into place. It was almost like watching like a bad show about the about the White House. You know, there were on lockdown. Everyone gets to the Situation Room, the lights in the room go dim, you know, like, I was like, Oh, it's just let her drink the juice and just make sure she puts another one back in her bag. Right. And that was that was sort of it. But it sounds like you're closer to that then than not, but you're at this for eight years. How long did you spend afraid and when do you start coming out of it?

What happens when perhaps the most impactful piece of diabetes technology in the last decade has a long boring name like continuous glucose monitor? Well, what happens is it's confusing a little bit. That's why I try every week to tell you about Dexcom. So that one day you won't just think of a tissue and a Kleenex is the same thing. Because Kleenex is a brand name. A tissue is a description of that brand name. A CGM is the description Dexcom is the brand name. Now, none of that helps take away the fact that continuous glucose monitor is a very very unsexy grouping of words. But here is what is exciting. Everything you've heard today on this podcast wrapped around diabetes, everything you've heard for 143 episodes about it. The idea that you can see the doctor erection of your child's blood sugar of your blood sugar, not just the direction it's going, but the speed, it's going in that direction. And what's the number? Am I 90 diagonal up? Am I 90 and stable? Am I 90 and falling fast? Well, there's a big difference between those three things. A big difference, how about when we're bolusing for a meal, and you can see stability, like we're talking about today with Arden's lunch, when you can see that stability, you can feel comfortable, this bolus was right, my Pre-Bolus was right. My goodness, this is something you want to have this amazing information is available remotely because of the Dexcom share and follow ups are available for Android. And for Apple phones. Just imagine someone being able to see your blood sugar or you being able to see your child's blood sugar in real time, not just what the number is, but which direction it's moving, and how fast it's getting there. Please go to dexcom.com forward slash juicebox. To learn more, you will not be sorry.

Nickie 30:56
You know, I was probably driven by fear for the first I would say like probably four to five years, I would maybe say and you know, I think some of that had to do with just like, I think I was a little nervous to reach out for support. There were things that you know, when when you don't have a circle of support. And I don't mean that in like I have an awesome, you know, network of friends and family and all that but it's like people like you people like you know, I'm in Type One Diabetes moms group on Facebook, you know, things like that just help you have those conversations, but you know, even your friends with the most well intentions, you know, just coming up to you and asking you and like saying no explain it to me, and you explain it to them. And they're just like, you know, you can tell it's going over their head, it would have gone over my head, you know, like, it's that kind of stuff and getting the support and just like being around other people that have it one of Will's really good friends has it, which is crazy. And so his mom, like just having that little network has gotten me out of that fear. And you know, just

Scott Benner 32:05
to information because the difference between the difference between support from well meaning people and support from somebody who understands exactly what's going on and can offer some thoughtful commentary back again. That's the that's that's the support you're talking about is that being around people are living the same life you

Nickie 32:20
are. Exactly And like we went to the ADA gala, my husband actually is the wine company that he works for did something and he got tickets to the ADA Gala. And I'm like well absolutely let's go and I remember they showed this whole thing on camp needlepoint which is a diva camp needlepoint.

Scott Benner 32:40
I'm sure the camps all have different names. The one that we just did in the podcast last week, which by the time yours goes up will be months ago but is the one that's closer to me. It's the Jaya.

Nickie 32:51
Okay. Yeah, and so like locally around here and I know they have a few in this in a few of the other states around here but um, so camp needlepoint, they did the whole presentation and I was like, there is no freakin way. I will send my kid to camp like Sorry, no.

Scott Benner 33:08
Explaining the camp and you Oh, you're hearing so I locked him in a garbage truck? And then it crushes him. Is that what you just said? Because it feels like that's what you just said. I'm not. Yeah, I'm not. I'm not you're not killing him for your camp. That's what this is. You murderers and

Nickie 33:25
oh my god. Totally. I mean, you're they're showing me videos of like the kid swimming and doing all these great things. And I'm like, Oh, hell no, no, no.

Scott Benner 33:33
Happy for the video. I see what's going on here.

Nickie 33:37
It's just reaching me out the idea of that freaked me out and then I remember just kind of coming out of that thinking. And we'd gone to the gala. I think it was like three years that we went to that Gala. And finally, I was like, Okay, you know what, like, he needs to go like he needs to go and I've heard from other people like in that moms group camp needle points. Amazing. And then other people we met in the community who like said oh, this will go to camp needlepoint. And I'm like, No, you know,

Scott Benner 34:08
children the way I do obviously, and because it is scary. That's the whole concept of it is even when they're like No Don't worry, they'll be watched with people who have diabetes and everyone by the way this camps been operating for you know, dozens of years and no one's ever bothered on you're just like that. Do you can't fool me, right?

Nickie 34:28
Oh, yeah, it took me so long and so well has gone now for three years. And he is going to go again this next year. And it's like for me the camp and like getting the Dexcom I think well in the Omni pod with along the way. You know, when you are using injections like that is like you're shooting arrows in the dark and it's really hard. I don't know how we ever got through those years and those days and those nights because, like, I can't believe what we have in front of us today with the decks and knee pad like that these are lifesavers. And I, I just, I'm, I'm so grateful that we have this technology that can help us move forward. So we're not constantly in the dark anymore.

Scott Benner 35:14
Yeah, it's it's a, I mean, I've said it a bazillion times, but I genuinely don't know how to accomplish most of the things I do without it. Although I am going to try again. Pretty soon I'm going to set up another podcast with a person who is doing injections and they're doing amazing. And I want them to explain to me how because we actually have a, there's an episode that's recorded that's not up yet. Where we tried that I got on with a mom who does injections. And I said, Okay, so, you know, let's, you know, can I can we have you on and you can tell us how you're doing great with injections. And the first thing she said is we're not doing great. I was like, Ah, this isn't gonna go the way that I was hoping. So we talked about why it's not going right. You know, they still have a really good conversation. But I've got this gentleman who's like, no, we're doing it. And so I'm gonna try again to have that conversation because I can't in my mind, I can't figure it out. So I couldn't for a very long time, and I can't now and now maybe I'm, I don't want to say I'm spoiled. But maybe I am spoiled, like to some degree. You know, we, you know, it's been 20 literally exactly 20 minutes since Arden did her her um Pre-Bolus. So she's been in the lunchroom now for five minutes or blood sugar's 107. Wow, you know what I mean, and now, she's eating now. And just just as the food starts to hit, or the insulin is gonna come down, I'm even like, looking at her now. Like, there's part of me that wants to cancel the extended bolus, right? Put all of it in the balance of what it didn't go in, goes in there. But I'm gonna wait a couple more minutes, because I think this could still work out like there's part of me is like, I should have maybe broke out the balance of The Expendables or a half an hour, not an hour. Right. But I did that because she's got a lot of vegetables in her meal and a heavier bread. And I think those things are going to take longer to start affecting her. You know what I mean? But it's in my mind, I'm like, but what if she eats the yodel? First. That is the entire thought process right now, by the way about whether or not my extended bolus is at the right distance? It's like if she grabs the broccoli and the end the the grapes and the bagel first, then my one hours perfect. And if she dies into the yodel first I'm completely,

Unknown Speaker 37:26
totally, totally

Nickie 37:28
oh my gosh, isn't it just it's like, you're always kind of crap shooting in so many ways, you know, with this and, but got to be able to have the the structure and like just seeing the numbers and having you're just watching the lines and being able to have that in front of you makes such a huge difference mean that even if you were on injections, and you were doing this, I mean, I don't know what I like about Downie pod two is the fact that we can play around with those temp basals and extended boluses. And, you know, really take those deep dive. And I remember when we first got the Omni pod, I was like, Whoa, that's way too much information, you know, I essentially for quite a while use it, just as I would have injections, you know, and just it was like an insulin delivery system, you know. And now it's like, as you move into move out of the fear and into just that sense of control, and then just knowing that you know what, I've got this Dexcom backing me up, like I can look at this in real time at every second, I can fix my mistake,

Scott Benner 38:27
when you talked about the 74 blood sugar earlier that was falling, and it needed the 15 grams. If that 74 was very steady, and there was no insulin going on. You probably could have tried and I imagine you would have like Temp Basal, maybe shutter Basal labels off for a half an hour and see if you can drift that way. I that goes back forever. To me when we were doing injections when Arden was a baby and I'd have those conscious thoughts like I wish there was just a button I could push to stop her, her slow acting insulin from workings for a while. You right? And there is a button now. So you know,

Nickie 39:01
isn't that cool? I know that it terrifies me now to think back to using lantis. Because you you lose that ability to pull that back. And it's like once that is in that is in

Scott Benner 39:12
it does what it does. And and and and you don't really know. You know, I guess I guess I know I'm not a doctor, obviously, I'm sure the people who make slow acting insulins would not be thrilled, but I don't think that it works steadily for 24 hours the way they say it does. So you know and so there's times where it works. It's less, you know, less effective, more effective. You know, there's a lot of different issues and you don't know it's all guessing, you know, at least with this you can say I'm going to do a Temp Basal off for like we did it the other night. I bolused Arden's like ardmona ice cream. So I went out and she's like, I want you to go to this place and get ice cream and I was like, Alright, she had a long weekend and she did a really good job. I was like okay, I'll go. So I went out. I got ice cream. brought it back. She's like, I want Carmel whipped cream. It's like, okay, so I gave it to her. I texted her when I was about five minutes from so I'm like, boom, you know, this is what I want you to ball. She boluses it comes home starts eating the ice cream. She's about halfway through it. And she goes, I shouldn't have got the whipped cream. It melted on the ride back. This is disgusting. And she hands it to me.

You know, just like, Okay, hold on, does this let me breathe for a second. And and I didn't make a big deal out of it. I was like, Yeah, sure. It's disgusting when the whipped cream melts. And I was like, Yeah, he hands it to me. And I'm like, Okay, well shut your bazel off for an hour. So I started doing Basal that time. And it's 1.1. I gave her you know, three units for the ice cream. It wasn't a very big one. But you know, she did eat some of it. So I'm like, maybe I can get lucky here and trade bazel for Bolus and let's see. And it worked out fine. It worked out so fine. You know, it just there was no issue around that at all. You know, with the, you know, injections, I would have just been like, well, you better figure out something else to eat. Because we're not stopping now. Now we got to feed the insulin, you know that you've got that you that, you know, that was further on board?

Nickie 41:15
Yeah. Oh, my gosh, I

Unknown Speaker 41:17
know. It was great.

Nickie 41:19
It is it's crazy. And I remember so when, when we were first diagnosed. So we were on a trip visiting my husband's parents who lived in California. And so we were just we noticed some things going on with well, and I called my nurse back here. And she just said, I don't want to alarm you. But I think you need to go into the emergency room right now. And so I went through this

Unknown Speaker 41:40
statement, I don't want to alarm you. Please find emergency room, right.

Nickie 41:47
I know. And that was exactly what her words were word for word. I was like, okay, and this is like a woman that like saw me as a baby. And so she's known me my whole life. And she said that to me. And I was like, oh my god. Okay, so Cathy, serious, I gotta get going. So

Scott Benner 42:03
to get upset, but you're on fire. You might want to skip over the well wishes about hoping you're not gonna get upset. Just go right to the Hey, Japan,

Unknown Speaker 42:14
and get the house but I don't know why I find that amusing for some reason.

Nickie 42:20
is now you know what I mean? Like, back then it wasn't. Now when I got back then I was like, Are you freaking kidding me? You know, and just, it's, it's crazy. So yeah, totally. So we went into so we had our little boot camp, you know, that they basically put you through when they admit you into the hospital. And the way they did it in California was so different than Minnesota. And so, you know, and of course, I didn't learn that until we got back to Minnesota. But we Um, so in California, what they had us do, this was so crazy. So we had the lantis. And then we had humalog and humulin. And so we would have to mix those two, and we had like these certain time intervals that we had to give will influence and it didn't matter. Like it wasn't like with the food always like it was really bizarre. It was like, Okay, at this time at this time, and then every meal, it was like his meals were 45 carbs, they always had to be 45 carbs. And his snacks always had to be 15 carbs. And they had to be spaced out in these intervals. They were and it was

Scott Benner 43:20
eight years ago. They were teaching. They were still teaching this in California. Yeah, I still mean, I still meet people now, by the way that that are taught like this.

Nickie 43:29
Wow. Yeah. It's so archaic. Like, it's just like in mixing that kenalog and humulin. Like, I'm sorry, like, That is insane. When you're trying to do that as a new parent, like, starting with, like, having these needles that you've got to shoot into your child that you're still getting your brain around that you know, and then having to mix the insulin and if you accidentally mess up, you have to throw it away and start over. I mean, it's just like, it's,

Scott Benner 43:57
it's an odd thing, especially in the beginning because everything they teach you everything you need to know for diabetes, especially when it's coming through needles and everything. It feels like such a thing that's supposed to happen at a hospital. Like it's almost like if someone said hey, you know you're gonna get chemotherapy for your cancer. Here it is. Do it at home. Like Yeah, you figure it out. There's a couple of sheets of paper and then you watch a video on YouTube you're gonna get it like you know, like it just it seems like when you're being taught it you're just like no, that seems like something that happens at a hospital we live here now. We know this is you know, I know I live here and you'll give me the the Intel eat the food we'll all grow together in this hospital room because because that doesn't seem like something in person has to do at home and it really does strike you in the beginning like that and then you figure it out but but yeah, but they've got you all that plus mixing and and eating the interval eating with a five year old sounds maddening, actually, so Oh boy, cuz I'm assuming well wasn't always hungry.

Nickie 44:55
No, not at all, you know, and it was just like trying to You know, you feel so bad and you're like, dude, you got to eat this buddy, like, trying to talk him into it and, you know, help it letting him decide what to eat. I mean, we like wrapped our brain. And fortunately, we only had to do that for about like, I don't know, a few weeks, because we had to do that at home until we could get in with our doctor here and meet whoever our doctor was going to be, you know, and it was just kind of a weird transition to have that happen on the town and then come here and then meet a new doctor. And then she set us up with this new program, which is so much easier with just, you know, the hemoglobin it and the lantis. That made life a little bit easier. And I do get it, like, I think, you know, when I think about Atlantis, and I think about, you know, like, we are really involved parents, you know, like, we want to do this, we are so committed to helping our kids be healthy and strong. And there are kids out there that don't have parents in their life like us. And so I can see where Atlantis and things like that still play such a huge and strong role in you know, medical community. But I think when you are ready to take a deep dive like this, like, that's kind of obsolete in our world, you know what I mean?

Scott Benner 46:04
It's, it's, um, it's one of the things that I hope the podcast is doing for somebody and I don't know, if it reaches people who aren't motivated, you know, to the to that extra level, like you're talking about, but I want I so badly want people to understand that it's so much less effort to keep someone's blood sugar at 100 than it is to fight with someone's blood sugar hits 250, and then it's 40. And then it's 300, again, like that, that takes a lot of effort. You know, totally you figure it out in the beginning. And even without the technology, you can figure out enough that it's not bouncing around like that with the technology, if you're if you're fortunate enough to be able to to get it, it just, it's so much simpler to live like this. Like then than that. I know that sounds weird. If you're, if you're not at it yet, if you're struggling to get to it, then it that that sounds like you want to come here and hit me with a board probably but now we are now we are literally over 31 minutes past Ardennes Pre-Bolus and our blood sugar's 100. And it's just starting to if you look on the very edge of the three hour line on our Dexcom, it's heading down. And so now we're gonna see it, I'm hoping it goes down another 15 points before it levels back out again. And that was the goal, but but I don't have to pay attention to it. I'm looking at it now. So you and I can talk about it. If you and I weren't talking, I wouldn't be looking, I wouldn't have my phone out. You didn't mean like it, but if her blood sugar was, you know, 200 going into lunch, and now I'm watching it climb up to 300 while she's eating, then I'd be fixated on it, I'd be thinking about Do I have to bring her home? Does she have to drink water? Do I have to change your insulin pump? Like what is instead there's there's nothing to think about it said 100. You know, it's as counterintuitive as it sounds, it is easier to keep someone steady at near an optimal blood sugar than it is to fight with it going all over the place. Now the of course the rub is to get to that spot. But

Nickie 48:03
Yep, and it's liberating when you can get there because like, just holding on to that fear and going, Oh, I'll just let them run a little bit high. You know, like, that's always kind of my was my go to like office a little bit high, that's okay, you know, then if he's active or, you know, then it's okay, it's okay. And I would just sort of talk myself into it being okay. But then it was always these fights and sleepless nights, you know, meaning fighting the blood sugar, and sleepless nights for me, you know, he flipped through it all, which is great. Like, I'm so glad he does, and that I can be there for all of this, because this is the learning curve. And then when I send him out into the world, you know, like, those are all you know, the things that kind of go through my mind, like how he's going to do this without me and blah, blah, blah, blah, blah. But you know what, I'm making myself too important. Like, he is going to do great with this. And it's it's so you're so right, it is so much easier. Like we've had a couple really good days lately. And they are so easy. I mean, it's just like you just, oh my gosh, it's like 10 times easier

Scott Benner 49:03
here. Well, here's where I think the you know, cuz we never really talked about this. But if I extrapolate out that you know, I always think about the, the I guess the speed bumps on the way to what you were talking about earlier, like right so I first have to successfully translate everything that I've learned into my daughter without making it easy, right? That's wrong. Then you have to get past this idea which is right now she has a caregiver there's someone she gets to think about her life and not about this too much. And she does but not not not like I do probably. Uh huh. How do you get that onto her without it burdening her and who gets you up at two o'clock in the morning because then there's this other thing right? Like if you told me I had to wake up at two o'clock in the morning for my health. I would sleep through it and die earlier. And but but if you told me I have to wake up at two o'clock in the morning for my kids health, then I can accomplish that. Right like and and When something goes wrong in the very beginning, I would take it as a defeat. But then I realized I can't think of it like this. If I do, I'm not helping her, I have to take it as information that I learned from. And so now even though the things that I see as as shortcomings in my decisions are not as big as they used to be impactful as our health like this morning is a great example. Like I woke up this morning at six o'clock Arden's terrible at getting out of bed and around, so she's trying to figure out how to do it. So she's setting up these multiple alarms on our phone with these have noxious alarms that are going off earlier than she needs to get up. My wife and I are like, Oh my god, stop. But I'm like, you have to let her do it. Like she's trying to teach yourself how to hear it. You know what I mean? So let her do it. Since she's getting you know, she but I wake up for her alarm blaring through the house that apparently no one hears but me and and Kelly and her blood sugar's 128. And it's been there since four o'clock, and I have her high threshold set at 130. So it never alarmed in my mind that 128 felt like I was I wasn't upset, but I wished it wasn't there. You know, to me, like that felt high to me. Yeah. And so as I walked into a room, because she wasn't up yet to give her this insulin. It started the diagonal up. And I was like, Oh, yeah, see, now she's waking up and our bodies kind of kicking in and everything. And it went to 140. Before I got it back down, and I look at it here. It did 140. And then by eight o'clock, which was two hours later, we had it back down again. And I couldn't be too overly aggressive with it, because I had to walk into the Pre-Bolus for, for I could have been more aggressive as she was home and she was going to school as what I'm saying. So she was 140 for two hours. Now. I can get into a time machine back when I would have thought that that was me just you know, at the pinnacle of diabetes success, and and and yet now it's like it weighed on me for a couple minutes this morning. Like oh, okay, and then I and then I just was like, that's when I started thinking like, I might move or high threshold to 120. Soon, like, because what I'm learning more than anything is that wherever I set those lines, we seem to stay in between them.

Unknown Speaker 52:18
That is such a good point. Yes.

Scott Benner 52:21
Because Because you react, right, because you're and people like oh, you must be reacting constantly. But I figured out how to stay pretty stable. So. So no, not really like I mean, I maybe I would like to know what else 129 130. And as soon as I feel like we can accomplish that then I'm going to get to that. And by the way she is now 36 minutes after Pre-Bolus she's 95 is going well. I'm feeling pretty good about this one by the way,

Unknown Speaker 52:48
that victory and forget

Scott Benner 52:50
that like I'm hoping people here but I did with the extended bowl. Spread out a little bit and thought about the food. That's That's why I'm I get so many notes back there. People are say, hey, yeah, last week's podcast was great. But I really liked the way you talk through art and Bolus, like in real time. And I was like, Oh, okay. I was, I was just doing that because I was too lazy to stop working and keep going. But it turned out to be positive. So I was like,

Nickie 53:14
No, you should keep doing that. I would agree. I think that's really cool. Because Yeah, it's like, okay, you you do you need to talk this stuff through and like, give it some, okay, she's gonna do this. It's gonna do that. Okay, perfect, perfect. You know, you can just really, no one else understands those conversations. And so when you have those, like, hear other people having those you're like, yeah, okay, totally. Dude, I would do the same thing.

Scott Benner 53:36
I mean, what it would sound like to someone who didn't have diabetes, like all these odd buzz words and phrases and everything. And you'd be like, if you walk into a doctor's appointment for somebody who was sick with something you'd never heard of before, and they're just like, I don't understand anything they're saying to me, but it makes so much sense. Oh, if you're totally Yeah.

Nickie 53:56
Go ahead. Sorry. Oh, I'm sorry. I was on the phone. It was so funny. I was talking to mark and my husband and I was in target. And I was like, so frustrated will has been high all day. And I'd like said that loud. And I'm like, Oh my god, that sounds so ridiculous to other people. Like they're like, Oh, my God, who was high at her house, like what are they smoking? You know, and

Scott Benner 54:17
so yeah, and it's such a shame. That's why she's at Target. And I love that. I I've thought like six times at a different point in American history. Your husband would be a bootlegger. It's so great. Oh, totally.

Unknown Speaker 54:31
Yeah, sure.

Scott Benner 54:35
That would be so much more exciting. I think that selling wine legally for some

Nickie 54:40
Oh Italy I know you should see our house we in you know he just had to convince me to get another wine fridge and like we have to have these dual zone wine fridges that one for the red one for the white like it's just it's you know, I can't complain to be honest. It's pretty nice.

Scott Benner 54:56
The bills are getting paid. I don't see a problem with any of this. And and obviously You have Dexcom? So you have is that through your insurance? By the way? Are you paying cash?

Nickie 55:04
Yeah. So we we do have it, we have to pay like our we have to pay? Well, I believe we get some sort of benefit through it, we have to pay with a certain like those HSA money or whatever. And then we have like our deductible sorry that we Yeah, you know it and then once that's not we're, we're done.

Scott Benner 55:26
Yeah, I feel very fortunate every time I just ordered insulin pumps recently. And, you know, I think I paid, I don't know, $120 for them or something like that. So that's it that always feels very fortunate when that's happening, because, and that is the other side of it, like you're talking about, about what do you say to your kids about how to pass this off to them at the same time? Geez, like, what do you bake once they're not insurable by you anymore? You know, and I was in my early 20s, I wanted to have health insurance when I switched jobs, but it wasn't the most important thing that happened or didn't happen to me. You know, it's it's a different. It's just a completely different situation. You know, it's, oh, yeah. So I it's hard to think about and, and it's hard to, it's, I don't know, it's just hard to, you don't want to think too far ahead with IBD. Sometimes, I think sometimes I think it's good to just today and tomorrow. And that's enough, you know, try not, try not to wonder about 10 years from now, because things will change anyway. And you'll think I worried about that for no reason or whatever. or, or, you know, oh, no,

Nickie 56:33
no, I hear ya. It's like, I just stopped myself. And, you know, it's funny, just like with my husband being in like the wine industry and stuff, honestly, like when I was sitting in the waiting room to be admitted into with for him to be admitted. First of all, I couldn't get a hold of my husband. So sitting there by myself with will and he's just five and playing. And I'm just sitting there. And I remember just the stream of thoughts that went through my head and they were so like, far out like to the future like they nothing present was coming into my mind. And I remember thinking silly things like, What if he wants to drink alcohol? Like, what if he you know, just all those things that like, I'm like, how am I going to do this? How am I going to do this? And you just you It's so bizarre how you can really get yourself caught up in that wheel of thoughts. It's like you're on a hamster wheel of things you can't do anything about anyway. So, you know, it's like, turn around and just

Scott Benner 57:23
say, your girlfriend when you're 15. And you stop your brain from going What if this would have happened? And what if that like, I remember walking out of the carb counting class, like the third day and Arden's diagnosis, the hospital, and my wife just looks at me and she blurts out, is she gonna be able to have a baby and she starts crying. And I was like, I don't know. I was like, I have no idea. I'm sure yes, like, like, but I don't know. And God, you're crying like you're Irish, you never cry. And that poking. I didn't even think her tear ducts worked. I was like, wait, what's going on? around your heart began to melt. I'm not sure. I hope the Irish are listening or not insulted. But my wife is very stuck. And so like, you know, like, just, I don't know, she was crying. I was like, Oh, my God, if you're crying, we must be in trouble. And I was taking it. At that moment coming out of the other card counting class. It hit me like a ton of bricks. There was, I believe eight or nine families around this giant conference table. They had all been diagnosed in the last couple of days at this hospital. Uh huh. And we were all in this card counting class together. And as I walked out of the room, it hit me. If there were nine families, there were eight women sitting around the table and chairs with eight men standing behind them listening. And I was sitting in the chair with my wife standing behind me because I'm a stay at home dad. And it was like, oh, it like I put the two and two together. I'm like, the people sitting down. They were the people are gonna get hung on hung with doing this when they get home like, right, like, this is me. And then we tried to go back and count carbs in the room with the nurse and give it and I was there. There was this math, you know, it's some formula and I started doing it. I lost my ability to do simple math. I couldn't do fractions anymore. Like everything just left my head. Oh, yeah. And, and I, I broke down and started crying trying to draw up the syringe. And the point where my wife looked at the nurse, like and saved me and she's like, you should probably just come back later. Like, he needs a minute. And I was like, Yeah, I was like, I was such an ugly crier, too. And I was just like, I'm like, it's gonna be fine. And Kelly's like, I don't think so. And she's like, let's get this woman out of here. So she can't tell the story later. I'm like, you know, I'm like completely falling apart. And Kelly's like, what's wrong? I'm like, I can't remember how to do anything. Yeah, you know, and I can't get out the math, even though I know it's simple. Not in a sense, and I just said, I feel like I'm gonna kill her. Oh, yeah. You know, and that's how that's how all that Felt and I was just like woof. I remember when we got home because we were on vacation to when Arden was diagnosed because that's what happens when you're diagnosed with a vacation. And we got home and my wife said, What would help? And I was like, well, you're gonna go back to work in a couple of days, like clean the house. Like, like, do everything that I'm supposed to do everything and I'll just think about this. Uh huh. That was the beginning of a very long and sad couple of years of me and Arden, you know, hunker down while I'm staring her in the face going. I wonder if she's high or low right now? Yeah, you know, like, like, for two years, that that went into that window more years, like shooting art and getting didn't get a CGM until I think she was five or six, like it was a while ago. But we've been at it for a very long time with our little freestyle meter and the needles. So

Nickie 1:00:55
that's what we did do and you know, to kind of like, rub salt in the wound or whatever, we also ended up getting diagnosed with celiac. And so, you know, it's like, We're so lucky, man. It's just keep on coming. So, yeah, that was also you know, like, when, when you're faced with this, and then you're already just like, you know, kind of, I mean, not we didn't really put restrictions around any food to be honest. I mean, we're, we're pretty healthy. We eat really healthy around here, we focus on you know, meals and snacks. Being the trifecta is what we call it. Like, it has to be a fat, a carb and a protein, like a

Unknown Speaker 1:01:30
drinking wine, but a drink.

Unknown Speaker 1:01:35
While we want

Scott Benner 1:01:37
drunk, it's the business.

Unknown Speaker 1:01:40
We have to do marking?

Nickie 1:01:44
Oh, my gosh, totally. Yeah. So you know, it was like, it just was kind of that was like another layer to it. And if you were to ask, Well, if you were to sit down and just say like, Well, you know, what, how, how are things going with diabetes? And celiac, he would, he would tell you like, he doesn't mind diabetes. He doesn't mind diabetes. He hates celiac. Like that, to him is just such a worst life sentence. And I'm just like, wow, you know, that's, that's pretty eye opening to me. And then, at the same time, like, we've also had some complications. So it's funny, you asked me like, you know, he's probably about 100 pounds, or whatever. It's like, he also is experiencing some growth issues from celiac disease. So we've been having, you know, bone age, scans done of his hand since he was really little. And so he was diagnosed with celiac after type one diabetes. And so we've had the bone age scans done. And he's his bone age is actually 10 years old. And for a 10 year old, it's even on the small end of things. So they're looking right now into whether he's a candidate for growth hormone. And

Scott Benner 1:02:50
so is that attached to the see, like in the diabetes, because I know that I know, people gone through this with their kids. And it's, it's another indicator, it's a different kind of endocrine issue. I don't know that is is, are they related? Has anyone said?

Nickie 1:03:05
Yeah, so his endocrinologist believes that has to do with the celiac disease, so not diabetes, you know, his blood sugar's been, you know, not way Wakata control or anything like that, like, so it shouldn't have anything to do with that. So according to what he says, and he's just looking at that he had a test, I believe it was a pituitary test where he was in the hospital for about six hours. And they had to do this. To give him some medication, and then watch what it did was I don't, I can't remember all the details right now. But that came back normal, like he does excrete gorz growth hormone, but something is off with it. And so, you know, I think sometimes when we have wonky numbers and things like that, like sometimes I wonder if it has to do with all of that they all sort of, you know, they're it's like a symphony, you know, all of it and so

Scott Benner 1:03:57
against you at the same time.

Nickie 1:03:59
Yeah. Yeah. So we're kind of in the process of waiting to find out if he's a candidate for growth hormone,

Scott Benner 1:04:04
what would make him a candidate, you know?

Nickie 1:04:07
Yeah. So basically, they right now they look at his growth chart. And he has kind of flatlined, and he's done this almost every year of his life, like, he'll grow a little bit, and then he flatlines. And so they take, and I don't know, all of the details, like, they look at the way that the curve, you know, how do you know when you go in for your appointment, they show you like, here's how he's tracking, or here's how she's tracking, you know, among the averages and whatnot. And there's a z score that they look at, and I believe what that has to do with is like, is like velocity or it's, it's some calculation that they make. And so the z score, I apologize, I don't know all the details. But you know, this I walked away with, like, what do I need to know from this? You know, what do I need to understand and the big thing was, is that the score needs to be a 2.2. And his was a 2.27. So he's like, you know, The doctor said he will have to basically like petition to get that approved like it will be he said, I'm guessing that they will say no at first and then they will probably say yes after we continue to try to push it through because his according to like their growth skill and everything now, if he if we did nothing, he would probably reach about five foot six. But his genetic potential is somewhere around five, nine or 510. So, you know, so that's that he said that what they argue against is that it they will look at that as cosmetic. Instead of you know, and I'm like, really, that's just like crazy, because this kid,

Scott Benner 1:05:42
I need to get a bolt from the top of the cabinet that's not cosmetic. Say, listen, one day, my son will starve to death. Without this. You're gonna get a bowl. And so please, you can make trust me the doctor, it sounds to me like what your doctor saying is I know how to get this through. So good for you. I just, you know, it's interest and my son would kill to for growth hormone.

Unknown Speaker 1:06:05
I know, right?

Nickie 1:06:08
I would I'm five to so tall, he just

Scott Benner 1:06:11
wants to be taller. And and and so he would, you know, he would I'm assuming he would take the life of another human being for another inch of height, I think. And he's a decent person. But I think that's how much it means though. You know, it's just it's really interesting. I'm five, nine, and I feel it's funny. Around most people, I feel taller. I get around someone who's taller than me. It is really obvious that I'm not tall. You know what I mean? Like, it's, as you meet a guy who's six to him, like, Oh, I'm like his child. He looks at me like, like, I'm like, I'm a small person that he met at the park. And I hate to bring you back to my parents now. You know, but when I meet a guy who's even five, eight, or I stand next to a woman who's my, you know, my wife is five, nine? Uh huh. Sometimes I stand next to a woman who's like five, three. And I think, why did I not do this? I did not try harder to find a woman who I stand next to. And I feel really super tall. And Joking aside. It doesn't help my wife to feel feminine to be standing next to a guy who when she throws heels on is three inches, three inches taller than like, so I was like, I could have made everyone much happier by trying to date shorter women. And so I do some consider that, but not as That's hilarious. Please, you don't mean like there's exams, I'll have a conversation with a couple of moms and I walk away and I realize I feel better about myself. I know, that's ridiculous, right? But just because women who you haven't been married for 20 years actually seem to care what you're saying. But because, like it's, it's the height thing. And so it's more important than as a very long way of saying it's more important than just how I look, you know, like, there's, I can tell you, for sure. It's, it's important to how you feel about yourself, too. You know,

Nickie 1:08:01
I would so wholeheartedly agree. And I think especially for guys, I mean, girls, you know, I feel sometimes like I look like I feel like I do sort of get treated like a child at times. I'm kind of like really, like, you know, people don't always take me as serious. Thank goodness, I have a large personality and it ends up working out. Okay. But, um, no, it but it is it's very,

Unknown Speaker 1:08:26
something to overcome the Wow, genuine, you're always

Nickie 1:08:30
you're always overcoming it. And one of my really, really close friends. It's so funny. She's a six foot tall woman. And here I am five, two, and we walk around together and like, we feel like we have so much in common because, you know, it's like that the opposites like she gets treated differently. Like she was always like, Oh, you know, oh, you must play basketball, you must play volleyball. And she's like, actually, no, I don't you know, I play tennis. And that's what I want to do. You know, it's the assumptions and the weird, you know, things that you get and same thing with me people put their rest their head on my on my head or rest their elbow on my head. You know, that's the way people are they pick me up and like, No, they don't do it anymore. I'm 41. But you

Scott Benner 1:09:11
have no control over what you do. I'm just coming at you. Look how adorable you are. That's, listen, this is I can tell you this, it's going to be a surprise. But your episode will happen after this. So it doesn't matter if we talk about it now. But tomorrow, I'm interviewing the actor Derek feller from the show, baby daddy. He has type one diabetes, but he's also slightly over 65. And as I look at what I'm going to talk to him about my notes, all I want to say to him is how cool is it to be 65 like that's, that's all I want to ask him. You're like, I can't get past any of the other things on my notes. I just keep looking and going. At one point I thought, Oh my God, he's eight inches taller than I am. Like he's like he's like two thirds of a newborn baby longer than me. Like Like, like, just you know, He must look at me and be like, Oh, are you okay? Like, how do you exist? I don't know, he probably doesn't know. Because he's handsome too. And oh my god,

Nickie 1:10:10
invite him over and see if he can help you paint trim or something around the house,

Scott Benner 1:10:14
like salting about his eye, can you get that? I just been looking at it. I don't feel like going to get the broom. Right. But But no, no, he's, um, I hope it's gonna be really interesting. He was diagnosed when he was two. So I think it's gonna be a conversation.

Nickie 1:10:30
So that will be awesome. That's so great.

Scott Benner 1:10:33
I just brought it up, because he's Six, five. And I just like I said, I have a handful of notes here in front of me. And I'm like, I'm gonna I know, when you listen to that episode, I guarantee I'm gonna launch into how tall are you five minutes? And because I'm for sure, because I'm fascinated by like, you know, it's not everybody gets to be that tall. Like, it's really, it's really kind of cool. So

Unknown Speaker 1:10:53
anyway, it is cool. It's really cool.

Scott Benner 1:10:56
I hope your son is approved for the, you know, for the therapy, because, you know, he sounds like it would be right for him, you know?

Nickie 1:11:04
For sure, for sure. Thank you for the thoughts. And yeah, I am really hoping that we can move down that road. And, you know, I like you said, I think psychologically, you know, I think there's just some self esteem that kind of gets gets tied up in that a little bit. And I wouldn't want you know, he's already has celiac. He already has type one diabetes, what's not given one more thing that's preventable. You know what I mean? Like, this is preventable. And he can, he can be more of an appetite guy, if we move forward with this, you know,

Scott Benner 1:11:34
therapy. And by the way, thank you, I don't even have to do an Omnipod or Dexcom ad because of how you talked about your technology today. So let's just say now if you want to learn more, go to buy on the pod.com forward slash juice box or dexcom.com. forward slash fuse box for more information. There we go. All done. And it's funny, too.

Unknown Speaker 1:11:56
It is really.

Scott Benner 1:11:59
I don't know if it's interesting, or if I find it exciting or not, but I don't ask people what they do to manage like, yeah, you can you know, vouch anybody who's been on the show vouches? I don't ask details about your life. I don't ask like we figure them out while we're talking. And so, but more people than not are like, Oh, I use it on the pod or I, you know, I we have DAX calm or something like that. I'm like, wow, it's it really is growing, you know, just in the community in general. Like, I think that's, I really do think that's fantastic. Because Dexcom would probably tell you that their biggest problem is, is that not enough people know what it is yet. Right? And so I just think it's exciting that that it's making its way, you know, I think it's so valuable, and we are gonna have to say goodbye, because we're over an hour, but do you want to get started and structure?

Unknown Speaker 1:12:44
I would say it is 111 99.

Unknown Speaker 1:12:48
Good guess nice. Very nice. I guess.

Scott Benner 1:12:52
I just really appreciate you coming on. And thank you so much. Do you have a blog? I didn't ask you anything about it. But it was in your email sign offers after your business.

Nickie 1:13:01
It probably was for my business. Yeah. So I just have a website that goes to my Fitness Studio. So we do have a blog on there, but we have a guest who writes it. So

Unknown Speaker 1:13:10
he's one of our members who writes it and so is your studio in Minnesota.

Nickie 1:13:14
It is Yep, it's in our little downtown area here in Rosemount.

Scott Benner 1:13:18
What's the dress?

Nickie 1:13:20
Um, it is Nikki and I ck IE Kerrigan ca ri ga n fitness.com. And our studio is called the warehouse.

Scott Benner 1:13:29
So that's your local. Check it out. That's great. Thank you again, Nikki. I really appreciate you coming on.

Nickie 1:13:35
Thank you so much for having me. I really appreciate it. Love your podcast.

Scott Benner 1:13:39
No, thanks. It was my pleasure. Thank you. Yes, you

Nickie 1:13:41
have an awesome day.

Scott Benner 1:13:42
You too. Wasn't Nikki fantastic. Yes, she was. I thought you were thinking that that's why I said it. I think we're thinking it together. Thanks to Dexcom and on the pod for sponsoring the podcast, my on the pod.com forward slash juice box and dexcom.com forward slash juice box to learn more. I also have a giveaway going on in the blog. Let me look real quick and see when it's over. I think I might know off the top of my head but it turns out that I don't on what I can tell you it's ardens de.com forward slash giveaways. And it runs till January 12. At midnight eastern time, she got about three more days. If you're downloading this the first couple days giving away some stuff. Go take a look on wednesday.com for slash giveaways. If when you get there this giveaway is over it's after the 12th of January. There's sometimes giveaways happening constantly all the time or throughout the year. You never know


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