#803 The Conversation Reveals All

Julia's child was diagnosed with type 1 diabetes at age two. This one goes in a number of directions. 

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

Scott Benner 0:00
Hello friends, and welcome to episode 803 of the Juicebox Podcast.

On today's episode of The Juicebox Podcast, we'll be speaking with Julia. Julia is the mother of a young child with type one diabetes who is diagnosed just before their second birthday. And this conversation covers so much I can't even listed here. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And Always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please take a moment to go to T one D exchange.org. Forward slash juicebox. And take the T one D exchange survey. It's completely HIPAA compliant, absolutely anonymous, all you have to do is just join the registry take the survey takes less than 10 minutes. And once you've done that, you've helped people living with type one diabetes, and moved type one diabetes research forward right from your sofa. That's pretty great. You can do a lot without leaving your house in less than 10 minutes at T one D exchange.org. Forward slash juicebox. Alright, thank you very much for listening to that part. Now let's go to the next part. And welcome to the next part. This episode of The Juicebox Podcast is sponsored by the Dexcom G six continuous glucose monitor. And you may be eligible for a free 10 day trial of the Dexcom. Gs six, find out more about it@dexcom.com forward slash juicebox links in the show notes links at juicebox podcast.com. You want to know who else the podcast is sponsored by? Well, I'm gonna tell you, it's sponsored by Omni pod. And they make the Omni pod five, which is an automated insulin delivery system. And they make the Omni pod dash, which is an amazing tubeless wireless system. Just like the only pod five is there both tubeless and wireless. On the pod five automated dash not automated, you decide which one's right for you. And you may just be eligible for a free 30 day trial of the Omni pod dash. How do you find this out? I'm glad you asked. Omni pod.com forward slash juicebox you introduce yourself anyway you want to be known, which just really means you don't need to usual ask them. You know, if we talk about people in your life, you're free to speak about them, you know by their name, or not? Whatever works for you. Just please don't say like Uncle Billy 53 times and then at the end say Oh, I probably shouldn't have mentioned Billy's name, you know like this? Yep. Yep. Then I'll just bang my head against the desk while I'm editing out uncle Billy's for you. So that's pretty much it. So when you're ready, go ahead.

Julia 3:04
Okay. My name is Julia. I am a mom of a diabetic toddler. She's three years old and was diagnosed just before the age of two.

Scott Benner 3:18
Julie, I don't want to go off track immediately. But are you giving me your gas station voice right now? We would maybe

Julia 3:25
I have a pretty good receptionist voice from work. So I mean, I'm not a receptionist. But you know, you kind of get that voice when you answer the phone.

Scott Benner 3:34
Is that what you call it? We call it a gas station voice here. I've said on the podcast before because my wife is never as kind as she is to the person who's pumping her gas. So yeah,

Julia 3:43
yeah. That's a customer service voice. And yeah,

Scott Benner 3:47
that window goes down on my website. Oh, hello. Like, who are you? Where's this wonderful person coming from?

Julia 3:54
I'll get better when I'm not like presenting my name because I could Saffold presentation vibe. And that's a whole different voice.

Scott Benner 4:01
It was this is all staying in the podcast. So you know, I just we spoke for a couple of minutes before we started and I thought that's not what her voice sounds like. It's funny. Anyway, so Okay, so you're the one I pay attention to my job here. You're the mom of a child with type one. You say a toddler? Yeah, yeah, she's three, three. How old was she when she was diagnosed?

Julia 4:24
It was 10 days before she turned to

Scott Benner 4:27
beat me by a couple of weeks there.

Julia 4:30
Yeah. That actually was one of the things that was a big draw for me with the podcast is like when you have a two year old to his diagnosis. It's like, well, what the heck is their life gonna be like, and that was a huge comfort, like, just knowing like, Hey, your kid's a teenager and she's doing great and I'm glad. That was like really the first big thing that struck me about the podcast.

Scott Benner 4:53
I would tell her so that she knew but then she'd look at me and go or those who are your people, not mine, or something. I don't know what she would say. She's just actually she's morphing as she gets older where she's like, that's nice. She said to me the other day, I gave her a message from somebody and she said, that's nice. Thank you. And then she walked away. I was like, oh, oh, she's becoming pleasant. Someone softening what's happening? So, okay, so two years old, your daughter, any other kids? No,

Julia 5:23
she's my first.

Scott Benner 5:24
Okay. Any sensor?

Julia 5:26
No. We haven't got the courage.

Scott Benner 5:30
Yeah, I 100% know what you mean by that? How about autoimmune or diabetes? Anything like that in your family line, husband side? Or if you're?

Julia 5:41
So yes and no. So we have diabetes in our family on my side, mostly type two. But I have a grandpa and an uncle who are both on insulin as type twos. And you know how that goes. Like? They could have just never been tested for type one. You know, they're on insulin. I don't know.

Scott Benner 6:04
Well, yeah, that could be insulin dependent type twos as well. But were they for a long, long time using insulin? Is that what you're saying?

Julia 6:10
Yeah, I think they've been on it for a long time. And like my one uncle, he's pretty thin, he doesn't fit the type two characteristics, you know what I mean? So just the idea that, you know, he's type one, or type two on insulin, you know, it's just kinda a little fishy. But, you know, we're not that close that I've ever really dug into it. Like, are you sure you're tight to

Scott Benner 6:33
now that you're speaking more you live near a large lake in the north part of the country? Is that correct? The Midwest? Yeah. How could a person lived their whole life thinking they had type two diabetes and only have an have type one and no one say anything?

Julia 6:51
I, you know, I don't know. But you know, you hear more now that I'm more involved in the diabetes community, you hear more and more of that, how it kind of goes on for a while, and they're like, well, we'll start using insulin because, you know,

Scott Benner 7:03
does he do well working out? Does he do well? Or does he struggle?

Julia 7:08
A lot of lows? Lows? Dangerous lows?

Scott Benner 7:14
Well, I'll tell you what, I might bet that he's type two, just based on what you said. I don't know. I don't know why. Just, I get a vibe. That's all. That's what the podcast is down to now, Julia, I just gonna sit here. And when people speak, and they stop, I'm gonna go, I get a vibe that That's right. I don't know how long it'll be interesting. But that's interesting.

Julia 7:35
Yeah. And then other than that, I mean, my husband's sister has, what I'm told is auto immune asthma. But I don't know how they know if it's regular asthma or autoimmune asthma, if that was ever tested. And then my mom has a little bit of autoimmune stuff, too. So there's auto immune in the family. And then I had gestational diabetes, which I hear there might be a link to that, too. I don't know. So I mean, there's little bit of links there. Like I'm semi familiar with diabetes, but not really type one. And yeah,

Scott Benner 8:08
okay. Well, interesting. Thank you for setting the table for us, and letting us know what's going on. So when your daughter is diagnosed it to her it's only a year or so ago? Was that right? Yeah, almost a year and a half year and a half? Do they start you off with? I mean, now that you hear other people's stories, what did you have one of the good experiences where they're like, Hey, here's a CGM and pens or a pumper, they like take these needles and go suffer until six months has passed by what did they? What did they?

Julia 8:41
I mean, it was kind of kind of a typical experience in terms of what you would expect, we got syringes, I don't know why, but I have no idea how to use a pen. So we started out with syringes and stuck with them, which worked out because she ended up going to diluted insulin where we would have had to do syringes anyway. And they didn't start her with a Dexcom at the hospital because she wasn't quite to yet. And they said the approval process with insurance will go faster if we just run the paperwork when she turns to. So we were without a Dexcom for a couple of weeks. But that wasn't you know, a huge deal, because our honeymoon hadn't started yet. And we didn't know what she was doing. We were doing so she was high all the time anyway, you know, but it was a lot of that don't die advice. Like we didn't get the good advice right off the bat. So, you know, what did you maintain carbon uncovered snacks type of stuff.

Scott Benner 9:34
Yeah. So real quick, though. What did you mean, the honeymoon hadn't started? Did she have a honeymoon?

Julia 9:40
Oh, yeah. So that's actually why I reached out. I kind of wanted to talk more about that because she has had one heck of a honeymoon. She went off of insulin for a while. She went back on it and it's been kind of spotty since then, and we've just had a lot of honeymoon type experiences and I thought,

Scott Benner 9:59
you know what's interesting now?

Julia 10:01
Yeah, and especially since she's so small, like her insulin needs are low anyway, like, she's just kind of a really interesting case to talk about.

Scott Benner 10:08
So at two years old, how much insulin was she getting a day?

Julia 10:14
She was getting about a unit, right after diagnosis.

Scott Benner 10:20
And would you give it to her as basil, and nothing else? Or were you giving meal insulin.

Julia 10:26
So we started out with, you know, a couple of units of Lantis. And very quickly started to take that down, and she went to a half unit for a while, and she was getting meal insulin, but it was really tricky, because, you know, her carb ratio towards the beginning, you know, kind of landed at like one to 30. And so if she didn't eat enough, we couldn't give her insulin, and they had us dosing afterwards. And it was just, it was a mess. So it was one of those like, Okay, kids, like at one point, like, they said, Oh, she has to eat this much. This many carbs to get any insulin. So I made her like a giant bowl of mashed potatoes. And she didn't finish it. You know what I mean? Like, okay, you're one finish this so I can give you a

Scott Benner 11:11
way, because no one wants a giant bowl of mashed potatoes. Is that right? Yeah. And

Julia 11:15
I mean, I like sprinkled ground beef on top and put some tiny little shreds of broccoli on there. So it seems balanced. But I'm like, you're pretty much gonna have to eat a bunch of mashed potatoes for this to get done.

Scott Benner 11:26
You're from the Midwest, you're like, potatoes, we'll put some beef on the top of it. And let's kill something in the backyard. We'll throw that on there, too. And you're gonna love this. It's, listen, first of all, that sucks. Because, you know, because I'm assuming what happened was somebody said to you, that this many carbs is the least amount that you need to cover this amount of insulin, which is probably the smallest amount of insulin you can give her. Yeah. Okay. And if you tried to cheat when she got low,

Julia 11:56
um, yeah. So, as her honeymoon started, it was kind of nuts. Because, you know, we were, you know, dramatically reducing our doses and whatnot. And she was just, we had her on like a half unit of Lantis. And there was one day, I sent her to school, like I was going to, you know, try and get her to get this big breakfast out. And I thought, Oh, she didn't finish it. So I can't give her the insulin. And so I sent her to school. daycare, it's a nursery school, actually. But um, I laid it out for the insulin for breakfast.

Scott Benner 12:32
I didn't think she was like a prodigy. I didn't think she was 10th grade or something. Like,

Julia 12:38
she might be a whole different thing. But so I sent her to daycare and like, alright, well, she's gonna be high. Like, I don't know what to do. And so she but she spiked to 180. And she's just like, she felt did a fall rate alert down. And she was just like crashing and I'm like, Okay, well, if she didn't have insulin, for this amount of food, and she just has her Basal on board. That was like, finally enough to explain to her like endo team. Hey, this insulin is way too much for this child. Like, because I talked to them before about, you know, I think Lantus is too much for them. Like what? And they're like, no, no, you can't take her off the Lantis. She'll go into TK. Like, like, I

Scott Benner 13:24
think this kids making her own insulin here. So yeah. And

Julia 13:27
like that was finally enough to for them to say, oh, yeah, we have to take her off of insulin. Because if that was just that the Lantis Yeah. So she went off of insulin for like two months after that. And it was amazing. And I feel like we should have took more advantage of it. But

Scott Benner 13:44
more advantage of it by like, going out to dinner and things like that.

Julia 13:48
Yeah, that kind of stuff. And you know, actually maybe getting a babysitter, you know, because you don't have to worry so much.

Scott Benner 13:54
Like, I should have gone out, Scott. That's what I'm saying. I should have.

Julia 13:59
I should have exactly. But like I had a newly diagnosed diabetic child, like I wasn't going anywhere.

Scott Benner 14:05
That's very interesting. And that's a lot of insight to just I should have just taken some free time when it was there. So two to four months without insulin at all. Yeah. And was she wearing the CGM still? Yep. Okay. And what did you see?

Julia 14:22
So it was kind of fascinating. So she would, you know, spike up at meals, she would get, you know, maybe 180 At the high end, and we weren't eating very high carb, but we're not a high carb family. Anyway, my husband does keto. You know, since I had gestational diabetes. I don't eat a ton of carbs anyway, so you know, she was eating pretty balanced meals. But she wouldn't get that high. And then actually, the interesting thing is before meals if she was starting to get hangry her blood sugar would crash to like 55 When I was getting food ready.

Scott Benner 14:54
Yeah, so it was taking notes taking no manmade insulin but wearing a CGM. So You could see her blood sugar getting low as with the meal approach, so she knew dinner was being made.

Julia 15:06
Yeah, something I mean, I don't know. But she was angry about it. Like, she was like, give me my damn food. You know,

Scott Benner 15:13
Jenny told me one time that the body in a, in a person who doesn't have diabetes, as it is, as it anticipates I got I hope I'm remembering this right that you're going to eat that it starts to lower your blood sugar a little bit,

Julia 15:26
huh, like even think it would lower it to 55. But yeah,

Scott Benner 15:30
definitely wouldn't think that. But I also know people who get low blood sugars. And, you know, I mean, that's some sort of dysregulation of their insulin, you know, people who don't have diabetes. I mean, who get let's just say unpleasant when they're hungry. You know? How's that? Is that a nice way of saying? People? Yeah, nasty. Like, I'll tell you that for years is a standing rule in this house. My son does not like to have food in his stomach when he's playing baseball. So when the baseball game ends, you don't really talk to Cole until Cole eats? Like, Oh, yeah. He's singularly focused. Sort of like a lion. You know what I mean? Like, I he needs to eat when he's done. Sure. Yeah. Interesting. Okay, so scary, comforting, sad. What's it feel like when someone tells you that your kid needs insulin? She has type one diabetes, and then all of a sudden it goes away for an extended amount of time? Did every day just feel like this is probably the last day or were you happy about it? I'm trying.

Julia 16:35
So I was really relieved that she was going off of insulin. But honestly, it took her endo some talking me into it because her nurses had me so scared about going off of the Lantus, you know, right, exactly. And it's like, okay, that's a valid point. Except if you realize, like that I'm giving my kid to juice boxes overnight to keep her numbers, you know, between 80 and 110. You know, and I'm basically spending my entire night juicing my kid, like, there's something wrong here. Like, she doesn't need that. So once I mean, the doctor, and I really talked about it, I felt okay. And then it was a huge relief, because, like, even at daycare, when she would like have breakfast, and you know, she would be dosed right after breakfast there. And she would go outside and play. Like, she would just be fall rate alert the entire time. And she dropped by like 40. And when reading, and it was terrifying. Yeah. So I mean, it was it was a massive relief to be going off with insulin.

Scott Benner 17:36
Yeah. Or at least for things to regulate a little bit, right. Like just to like, I mean, now that she's back, she's back on insulin now. Is that right?

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Julia 21:59
Yeah, yeah, she was only off for a couple of months. And it didn't take long after she was awesome. fast acting to go or after she needed her fast acting again for her to need Lantis again, too. So she kind of pretty quickly over the course of a couple of weeks went fully back on insulin.

Scott Benner 22:22
How much does she weigh when you were found yourself up at night feeding basil? She was about 30 pounds. 30. Wow. Okay, that's not nearly as small. I mean, that's don't get me wrong. That's very small. But it's not as small as I was imagining. So no, no

Julia 22:36
mid class babies are bigger babies when

Scott Benner 22:39
you're sprinkling ground beef on top of your roots. You have to you have to expect Midwest babies are big babies, are they? Do you ever see a baby that's a little smaller and think, oh, there's something wrong with it. They don't give it ground beef.

Julia 22:55
So I guess so this was something my OB told me is that, you know, the national average Baby's like something like 6.5 to 7.5 pounds or something. But the average baby in our area is more like eight plus pounds.

Scott Benner 23:09
Do you think that's because of the deep fried Oreo cookies at the fair? Or?

Julia 23:14
I mean, maybe we do eat a lot of cheese curds.

Scott Benner 23:19
Do you listen to this podcast with any frequency? Yeah, yeah, a lot of them. Yeah. Okay. I was wondering if I've ever told anybody about the time my sister in law came from Wisconsin at the holidays and brought what she called caramel corn. Except I do think I told this except it wasn't popcorn covered. And Carmel. It was like those. I don't even know how to explain them. Is it popcorn? Yeah. Yeah, like and it was just it was this. I don't even know how to put it like in your in your potato chip aisle. There are these things that they call like popcorn, but they're they're really more like styrofoam peanuts, if I'm being honest, right, like inconsistency. And she had somehow soaked those in a sugar substance and then put caramel overtop of them. And when one went into your mouth, your teeth hurt. And my brain felt like it was going to explode. And she's like, Oh, I make this with my mom at the holidays. Like it was a tradition for her. And I pulled my brother aside. I was like, Yo, man, she's trying to kill you.

Julia 24:24
I was like, grandma makes us two. They're they're good. But yeah, a lot of sugar.

Scott Benner 24:29
Like, I don't think that's food Brian, don't eat that. So anyway, yeah, that was something I'd never seen in my entire life. You know? Wow.

Julia 24:39
Even just your description of popcorn is kind of

Scott Benner 24:42
just like packing your packing peanuts. That's what they seem like to me.

Julia 24:46
Yeah, no, that's that's accurate.

Scott Benner 24:49
So I'm saying you shouldn't be able to describe food as packing. Yeah, that's valid. Also in a world of Amazon. Do people even know what packing peanuts are anymore? You know what I mean? Now everybody just gets a little like air pocket or something in their bag. I don't know. Now. It's been a while. Yeah. And now we're getting into shipping. And I think we that's too far off the topic. So well, did you? When did you have to start diluting insulin?

Julia 25:17
So we had started that right before she went off of insulin. Because they tried that first and apparently, like we go to a good size clinic, but she's like one of two patients that they've had that had diluted insulin. So I thought that was kind of interesting. But yeah, she started that right before and that was you, 10. And we just, they did it straight at the pharmacy. So they did the mail order pharmacy thing for us and just shipped it to us. So we didn't actually deluded ourselves. I hear some people do,

Scott Benner 25:50
like, Dr. Frankenstein, they're just working at their kitchen table, but you got it. Okay, so how does that? How does that work? So I am so I am so scared to talk about this. Because every time I see diluted insolent spoken about people, either there are two forms of understanding about how it works, and nobody's ever certain. So do you know what I mean by that? Like one unit equals? Oh,

Julia 26:19
yeah. So you 10 Is 10% the strength of you? 100. So it's like 10 parts. Insulin is what the like, compound is, it's, you know, 10 parts, insulin, 90 parts, the compounding, whatever it is

Scott Benner 26:37
that you're that. So So basically, you're diluting the insulin, so that it's measurable. Because it's because it's difficult to measure insulin, right? So when a tiny, tiny amount, so you can draw a unit, and you are really getting a 10th of a unit of strength, but a unit worth of liquid.

Julia 26:58
Exactly. Okay. Yeah. So that's really nice. Because you know, if you don't have a pump, you can do you know, half unit so you can get a point five increment. So like, if we were bumping and nudging her we do a lot of point oh, five units for

Scott Benner 27:12
her. So so if you needed if you need her ready, here we go. If you needed point, oh five for her. How much actual diluted insulin like how much? At half unit? A half a unit of liquid was actually point oh, five of insulin. Okay. So a full unit is, of course, one to 10. So you get point one. So if you needed if you needed a real unit of insulin, and you were using diluted, you actually had to use 10 units of liquid? Yes. Okay. Did that I'm assuming never happened with her at that size, right.

Julia 27:48
So there was a point when she needed about, like, if she was sick or something, I would give her eight unit. So it'd be like point eight, and diluted insulin has to be refrigerated. So we're injecting eight units of cold insulin. So that would really hurt. So that was really unfortunate. And that was actually the reason why, like as her insulin needs went up, we started to push to get a pump, because like we needed to do something different. Because, you know, she doesn't mind the pokes. But poking with larger amounts of cold insulin, that hurts.

Scott Benner 28:23
Yeah, the big Bolus isn't that it's cold on top of that. Yeah. So this is the moment where if you're listening and you don't understand you should say to yourself, my fifth grade teacher let me down. Because I see these icy these conversations. They happen about twice a year in the Facebook group where someone wants to talk about deluded insulin. And people get so confused. I mean it and the conversations happen exactly the same way. I've watched them a half a dozen times in my life. That starts with someone saying, oh, you know, we're using we were using you 100, which is like basically like your standard strength insulin, right? Like one, one to one. But now we're using diluted. So when my kid needs a half a unit, I actually inject this much and unit and unit. It just fries people's minds. And then when they try to explain it, it goes off the rails. Just it's masterful, how bad it gets, the conversations just devolve, and then somebody thinks you're going to hurt somebody, and then the panic sets in. Every time every time Julia,

Julia 29:35
you know, and it's always kind of a confusing thing when we update her charts at her endo appointments because they always log it in you 100 So I'm sitting here like, Okay, how do you want me to tell you this? And it's like, okay, she's having a one to five ratio. So it's one to 50 on your charts, you know? And it just makes for a confusing conversation. Yeah, yes. It's ridiculous.

Scott Benner 29:57
It's the interesting thing is that you don't Think of. Most people don't think of insulin as being in volume measured in volume, although a unit is a volume of measurement, right volume is how we measure liquids. We think of a unit as power for some reason, because we, you know, oh, sure, right, one unit per 10 carbs that its power, it's, you know, I ate 10 carbs, I need a unit of power from this insulin. And so when you start talking about it in volume, but in the same breath, thinking about it also empower, which is, you know, if you're using, what would you say you 10? Yeah, so you're getting point one per unit. So for volume, you're getting a unit of liquid. But for power, you're getting point one or a 10th of that. And that is just when it goes off the rails in conversation for some people.

Julia 30:50
Well, and the other thing is, is they tell you with deluded insulin to roll the vial a few times before each time to make sure that it's properly mixed. So you don't know 100%, that you're getting that perfect dilution either, with each draw,

Scott Benner 31:06
still a little bit of a crapshoot a little bit.

Julia 31:09
But you know, we never really saw issues from the inconsistency. So I don't know if the rolling it was just like an old school precaution. You know, I don't know if it actually becomes like a homogenous mixture or not.

Scott Benner 31:23
Well, it's, it's weird. How long did you do it for?

Julia 31:28
Well, she still actually gets the diluted insulin, like as a backup for her pods, because we can't give her that big of doses generally. Anyway, still. But we did diluted insulin for a year. Well, almost a year.

Scott Benner 31:44
Let's talk about that for a second at her at her current age. What does she weigh now?

Julia 31:49
She's nearing 40 pounds, she's maybe 3940 ish.

Scott Benner 31:54
So do you think she's still honeymooning to some degree?

Julia 31:57
At you know, I'm kind of back and forth on that. It's hard to say because her Basal rates some days goes down 2.05 an hour. But when she first started on our pump, she was at point o five every other hour.

Scott Benner 32:12
What proper using Omnipod? Are you gonna try on the pod five?

Julia 32:17
Yes, but I'm a little hesitant if she's ready for it yet, because her Basal needs are so low, that I worry about those algorithm pumps, you know, being able to give more but not being able to take enough away?

Scott Benner 32:31
Well, it could it could. Alright, so I don't know for sure. I mean, the loop can take you down to zero. So I wouldn't

Julia 32:38
I think Omnipod five, probably can because dash could?

Scott Benner 32:41
I would think so. Yeah, I don't think that would be your concern. I mean, as a matter of fact, I, I can't say for 100% certainty. But as I sit here and apply my common sense to it, there's no way that any of these algorithms can't completely shut off insulin, they have to be able to do that.

Julia 32:57
Well, right. They can but okay, if you're getting point oh, five an hour. Like sometimes it might be 55 minutes before you're taking away that point. Oh, five.

Scott Benner 33:07
I see what you're saying. But well, because once an hour with the algorithm be able to see that far into the future to know that I think it would be able to interesting, I think

Julia 33:16
it depends on how fast of a drop, but I mean, at a certain point, you're doing juice anyway. I don't know. It's

Scott Benner 33:21
the she's still fall very quickly.

Julia 33:24
She's getting to be much more stable. I mean, she's not super stable, like she's usually kind of drifting down most of the time. But it's not like rapid crazy drops, usually unless I was getting a little law. heavy handed,

Scott Benner 33:41
right? You know, the entire time you're talking. I feel like we're in the movie Planes, Trains and Automobiles, and we're at the bus station, and I'm eating John Candy for the first time.

Julia 33:50
Is it my accent? Yes, Your

Scott Benner 33:51
accent is terrific.

Julia 33:52
A lot of people say I sound Canadian. If I ever go to the East Coast, everyone, you know, accuses me of that. Which is funny, because I've had people around here ask if I was from the East Coast, but my dad was in the military. So when I was learning to talk, I lived in Virginia. So every once in a blue moon, you'll catch a little bit of twitching or something going on. Yeah, but

Scott Benner 34:14
it's blended. Actually. Anyone who would say Canada is not a connoisseur of people's accents. There's no sure I don't get Canada. I get Chicago more towards Wisconsin is what I get.

Julia 34:27
You are right in there. Okay. Uh huh.

Scott Benner 34:30
I love this podcast I get to do I get to do so many fun things that I don't think anyone else thinks is fun. But me, but I love listening. I can hear I don't know. I just feel like we're in the bus station. I'm I'm the mom from home alone. And, or something. I don't know what's going on. Exactly. I have a lot of pictures in my head right now. But I'm having a good time. So can I ask When insulin needs are this specific and dangerous? I mean, honestly, if you use too much ate? Yeah. Is it just you who takes care of it? Or, I mean, you haven't said you're married though, right?

Julia 35:06
I am. So my husband, he does like short spurts of taking care of her. Like if I need to run to the store or something like he can keep her stable and safe. But in terms of like giving her insulin, he usually like checks with me first. And you know, checks like carbs and whatever else. But like at daycare, it's kind of a weird situation. So when we started back to daycare, because she had already been going there, she, they weren't going to be trained on doing the insulin injections. But then they discovered how sensitive she was. And they thought it would this is a giant liability for us. And like, nobody was comfortable with giving her insulin, which, you know, in hindsight, I completely understand but at that point, I'm like, okay, you know, Ada guys, you know, like, you have to accommodate my baby. Um, but and, you know, like, the, the owners, the husband is diabetic, too. He's type one. So, like, they have all the compassion in the world for type ones. But, you know, that whole idea of, oh, we might kill this kid, you know, was pretty real. So I started doing it myself, like, so she would have uncovered snacks morning and afternoon, and I would dose her on lunch. But it was a lot easier because we live like four blocks away from the daycare. And I was working from home because of COVID. So it was really convenient. Like, I could be there really fast. So I mean, I handle pretty much all of her insulin needs for the most part, but then other people are trained on like the safety aspects of okay, if she needs a finger prick. But daycares thing is they also get really busy, like, you know, it's two teachers, 12 kids, and there's a lot going on. So most of the time, if she's starting to go low, you know, they kind of bump and nudge her a little bit like looking for, you know, like one tiny little cookie like an animal cracker size thing to keep her from going low. But if she's looking like she's actually going to go low, I go over there.

Scott Benner 37:12
Okay. How old are you Julia?

Julia 37:14
I am 34.

Scott Benner 37:17
Okay, because it's your story. I mean, you could be anywhere from, you know what I mean? Your early 20s, like your first kid to, you know, to older but your voice because of the Midwest thing. Like if you told me you were 53 I'd be like, Okay, I believe you. So I knew I knew you weren't sound I couldn't I couldn't nail it down. So I'm like, I'm like, I gotta ask. So

Julia 37:39
you're gonna make me a little self conscious here? No, we, we kind of got started late with having kids. Because I we had some fertility issues. And then, yeah, so it took us a while to have her and then, you know, she ended up having a lot of issues.

Scott Benner 37:54
Yeah, no, no, I completely understand. It's not. And by the way, I don't mean like, you sound like my grandmother. That's a relief. Just saying that. Like, there's something about this specific accent, it stops you from dating somebody as well, like, you don't even like, I don't know, how am I going to put this like, there are blonde girls in New Jersey, there were 27. And I can tell they're 27 When they speak three words. But you're like you have like a more mature cadence? Is that what I mean? I think so.

Julia 38:21
Well, yeah. So there's that. I mean, I'm an older Mom, I'm also an architect. And, you know, so there's a lot of, you know, professional stuff going on. And yeah, just

Scott Benner 38:32
like get a more measured experience. You guys, you guys one day, I'm going to I'll record one of my like, like a business meeting I have with an advertiser or something like that. And, and you'll be stunned that I'm not any different in like, my professional life than I am when I'm making this podcast. As a matter of fact, when when companies reach out, one of the first things I say to them, like us met as a sponsor now, and I'm on a phone call early on when they're interested in being advertisers. And I said, Look, just you need to know right now. This is me, I have no ability not to be the person you're talking to right now. So if you need somebody to like, shine this up for a meeting, or, like, just we should probably skip it, because I can't I can't do that. I was like, I am only this person. So I have no like, professional veil that I can throw over myself. My wife is always like, telling me you would get fired at my job in like three minutes and I'm like, No, I wouldn't. They would love me and she's like, you would get fired.

Julia 39:38
You know, I wonder if how much of that is the nature of your job not being in like a corporate environment, too.

Scott Benner 39:44
I also I just don't care. But I think that's part of it. Like you're an interesting story would be by the time this comes out if Yeah, okay. Especially if you just don't say this out loud. We'll be okay. Is going to be a sponsor of the podcast pretty soon, a couple of weeks. Nice and And I had to get on its own. And they're they're very, like it's a very professional company. You don't I mean, like they're just it's a it's a professional setup when you're when you're dealing with people and I had to get onto a call with like four or five people. And I was getting a little pep talk from a friend of mine who used to work at EPA doesn't work there anymore. And I was I was just chatting back and forth with her and I was like, I, you know, I've got this meeting coming up, it seems like a real adult meeting. And she goes, Don't curse. And I'm like, I'm like, I won't. She goes, No, Scott, you will. And I was like, why don't you just you curse in every meeting I've ever been in with you. And she's like, it's delightful. And nobody cares. She's like, but they're new. And this isn't the setting. And I was like, Okay, so like an hour later, I get a text from my friend. She goes, How did it go? I said, oh, a wink rate. They're gonna buy ads. I only said twice. Oh, my. She's like, how did that happen? I was like, I don't know it. Just the word really fit the situation.

Julia 41:06
You're just you're you're building rapport, Scott.

Scott Benner 41:10
I know. But I do it right on the razor's edge, like even my wife's like, Could you start with like shit or something? First? I'm like, No, I was like, it's not important. Anyway, it's, it goes back to. I think when I was like, 20 years old, I was sitting in a diner with my friends. Like it two o'clock in the morning, we're having one of those like, you know, conversations we thought were existential for our, like, 20s. And I just came off and said, like, I think you can say anything to anyone. If you say it correctly. And they were like, No, that's not right. And one kid, like put $20 on the table, and then said the most like, a pourraient word he could think of and he said, work that word into a conversation with the waitress without her getting upset. And I'll give you $20. And it didn't go well. Julie, I'm not really poorly, I did not think it through as nearly I thought my delightfulness would buoy the situation. But that wasn't quite enough. And it's the hold. It's funny back, I said, Give me two more chances. It was like, give me the best out of three. And I did work it out. Eventually, we actually, on the third try at a different restaurant, you know, at a different time. I found a way to slip a word and that just shouldn't be in polite conversation. And, and the person rolled with it. And it wasn't just because I know people are like, well, they're waitresses, they smile at everything. They don't want you to be upset. They're trying to get tips. Trust me, it worked. And, and since then, I like to say that I could tell you that your dog died. And that I killed it. And when it was over, you would thank me like that. Like I'm good at that. Like that. Like and it's not a thing you do. It's just the way of being I guess. So. Anyway, yeah, I said twice in that meeting with the people. Which I'm sure they're not thrilled that I'm saying right now. But anyway. That's funny. Yeah, we're gonna sell. It'll be fine.

Julia 43:04
Those did seem really nice. I was kind of bummed. I wasn't offered one. Like, you guys are giving me syringes. But then when we got to dilute it, it's like, yeah, okay. It's a good thing. I know how to use syringes.

Scott Benner 43:14
Do you know I've never used an insulin pen in my life? Really? Never. Not once. Oh, wow. Arden went from syringes. Right to an omni pod. Wow. Yeah, I used syringes for two years old, three years old. Part of the time she was four years old. We got her onto an on the pod before kindergarten started because I didn't want her to get because back then here was my thought process. I didn't want somebody I didn't know sticking her with a needle. So yeah, that was the entire reason I got a pump. That was it.

Julia 43:48
So it was already in good with the pokes.

Scott Benner 43:50
Oh, you know what? I never thought she loved them. Like don't get me wrong. When she was real little two years. She she'd run. Like, she'd see that she'd see the needle, she'd get a big smile on her face and turn around and run away. It wasn't much of a chase as she was two years old and her legs were very short. But she still put an honest effort into it, pick it up to get away. So I've had to, I've had to like hold her once or twice to give her one but for the most part, she was okay with it. The thing that I remember, I guess most strongly from that time, is that I was always so worried that this would just be some terrible thing that was happening to her that she'd never forget and it would just scar her. And, and I know I've told this before so just in a couple of sentences. After Arden switched to Omni pod, we just didn't have any problems with Omni pod. Like for the longest, longest time and years later, I had to give her like a clearing shot of insulin like I needed to give her an injection. And I pulled it out and like was filling it up and she goes what is that? And I said it's a needle and she goes for What? And I was like, I gotta give you some insult with issues. No, no, no, no, hold on a second. You know, and then, and then literally as we're talking about it, I come to realize, I probably stuck art in 10,000 times as an as an infant, like, you know, as a toddler. And just a couple of years after she stopped getting injections, she had no recollection of needles whatsoever.

Julia 45:25
Wow. Yeah. That's crazy, isn't it? It

Scott Benner 45:28
blew my mind. Like really genuinely did.

Julia 45:31
What really gets to me is Cora, she would like she got pretty desensitized to the needles pretty fast. And, like on bad days, you know, I might give her 10 little minor adjustments throughout the course of the day. So you know, that's 10 Different pokes. And, you know, at a certain point, she got to the point where I'm like, it was time to eat. And she would say, Mama, you didn't give me my insulin. Like, dude, I gave it to you, like five minutes ago. Like, that's how little she was starting to care about them. It was kind of crazy.

Scott Benner 46:00
Didn't even remember. Yeah, just because like,

Julia 46:04
yeah, and I mean, now, now that she's been on the pod for a couple months, she's, if I try and give her an injection, she kind of gets mad like, but then, you know, I give it to her. And she doesn't make a fuss about it. Like it doesn't really hurt her, but just you know,

Scott Benner 46:19
yeah, Kelly has a t shirt that says that. That's, I don't want to poke. Okay, that was the most Midwestern, pregnant pause that virtually she's like, I don't understand. Where's the sexual innuendo going? It says you're so lovely. Thank you for coming.

Julia 46:37
I wasn't I wasn't totally confident that that was an innuendo. We're not I was like

Scott Benner 46:44
wait, the wife doesn't have diabetes. I don't understand. She actually has a sign. It's on the side of the bed. It's

Julia 46:52
Oh, yeah, that that seems more appropriate. From what I've heard about your wife. She doesn't seem like someone to wear out in New Window T shirts.

Scott Benner 46:59
She's got it. She's not a t shirt slogan kind of person. I love that. That's where your brain jump to. That's great. She wouldn't. wouldn't wear a shirt like that. Hold on a second, while ardent? Can I just text ardency quickly. I am recording. Can we talk about this? In 30 minutes. here's the here's the text. So Arden is eliminating gluten for a month. Almost done. The honest truth is, I don't know if it's helping or not. We're having trouble telling. So I guess maybe if you're having trouble telling maybe it's not helping. I'm not sure but I get this text right. I want five guys. Next text. Oh, wait. I can't. I said no. You can just no role. She goes if there's no role, then I can't. Also I can't have a milkshake. Because she gets cookies in the milkshake.

Julia 47:58
Five Guys has a gluten free banana.

Scott Benner 48:01
Hold on. Person I'm recording with says five guys has gluten free bonds. All right. Talk soon.

Julia 48:22
I mean, I'm not 100% confident in that, but I'm like 90%

Scott Benner 48:26
We'll find out also this is what this text is really an indication of an any of you ladies of a certain age will know is that today is the first day of Arden's period. Ah, she's she's sitting in school going, I would like to get french fries. That says planning

Julia 48:41
her food in advance. Yeah.

Scott Benner 48:45
Exactly what's going on? Textbook.

Julia 48:48
So that is actually a good segue for the like last thing I need to talk about. So we kind of talked about like the first half of her honeymoon. And the second half got just kind of weird. She was diagnosed with celiac in November. And the reactions with that in our honeymoon were nuts.

Scott Benner 49:09
Tell me about it. Because I didn't know this. Was this not your notes.

Julia 49:11
It was not because I sent that out and then like, I don't know, two weeks later, we ended up with celiac stuff.

Scott Benner 49:18
No kidding. Okay, do tell how long again, on this podcast ever go like, Oh, my kid has celiac. And I'm like, oh, intrigued.

Julia 49:28
Well, I was wondering how we were gonna segment that because I didn't want to miss out. Um, so she you know, after diagnosis, you know, she we were eating lower carb stuff, so a lot more berries in their diet and whatnot. And she had just had the celiac screening at diagnosis. So, like, looser stools I wasn't really worried about like, Okay, well, it's a little bit looser, but it's not like crazy. And it's just like never like really solidified. Totally. I know kind of girls to talk about, but

Scott Benner 50:00
No, that's fine.

Julia 50:03
Well, you know, I have a toddler, and poop is a big part of my life. Um, and then, so it got worse, like this fall. And then I was starting to worry about celiacs because I know that was kind of a big relationship with type one. But then she was having this thing where at night before bed, like, she would always ask for snacks. And I would give her a small snack thinking okay, like this is about how much I can get away without without completely screwing up your blood sugar for the night. And she was just whining about being hungry. And so one night I'm like, alright, well, I'm just gonna feed you literally everything you want here. So basically fed or the kitchen and she's still saying I'm hungry. And I'm like, you can't possibly be hungry. Turns out she was getting tummy aches, and she was mistaking them for hunger.

Scott Benner 50:53
You're like, hear this will fix that. More food. Yeah, so

Julia 50:56
she's, you know, pouring food on her tummy hoping that'll help. And obviously it didn't. And like her, she was having pretty bad gi upsets. Were starting to and you know, after I realized that she was having stomach tummy aches. It's like, okay, so we got her in for the bloodwork it was elevated, but not elevated enough that we're they were confident just calling her celiacs without the scope. So she got a scope, there was evidence of the celiacs in the scope, like visually, like they could see the villi were worn down. And then also, you know, it came back positive. So she got the celiac diagnosis. And a came to realize that part of the issues that she was having, she was she would eat, she would spike high, and then she would crash back down. And I'm like, okay, is this a basil issue? Is her basil still way too much for her. But she's on like, a half, you know, Lantis at the time. So I'm like, Well, I can't really do anything about that. So basically, I was giving her just enough insulin to keep her under 200. And then I was catching the drop. Because like, what else do I do? Like do I let her go to 300 so that she'll level out at 100 later. You know, like, that doesn't make sense to me. So obviously not medical advice here. And I wouldn't advise people do that or take that approach. But it turns out, basically what was happening with the celiacs is her intestines weren't asserting her food. So as soon as her food would start leaving her stomach and going into her small intestine, like absorption would totally stop. And so she'd go from having, you know, all sorts of carb input and whatnot, and then her food just wouldn't absorb anymore. So she would completely crash. So after the celiac diagnosis, we took out gluten from our diet, obviously. And like her insulin needs started dropping like considerably. And so to the point where for a few, like few days stretches, she would actually like stop needing fast acting altogether. And she was still on Lantus at this point. So you know, like, we couldn't take that away easily. So there was still some feeding of insulin, but like there was like, for a week, you know, she would go she would have a few days where she would need insulin and then she would completely not need insulin at all for like three days. And then her insulin needs would come back, but they would come back higher because like pancreas would be like, Hey, dude, I give up. And then, you know, she'd kind of start tapering back down on her insulin needs again. And then it would go back up. But during all of this, like pancreas is kicking in and we're getting ready for her Omni pod start. And it's like they were already hesitant to give her an omni pod because your insulin needs were so low and you know, there are minimums for pods. And through practice by standard won't do diluted insulin and pump because that's not like a best practices type thing. Yeah, so I was starting to freak out and like we're starting a pump next week and she doesn't need insulin this week. Like she wouldn't be able to turn her pod and her endo was really comforting. She was like no, no like, this is probably like the inflammation in her body going away and it's like lowering her insulin needs and then her honeymoons coming back a little but her insulin needs will go back up as she starts to digest your food better. And her Ender was like 100% right about that because her insulin needs started to go up considerably. And so we started the pump and she was on like point o five alternating for her Basal, so barely anything. And like pretty rapidly like you could tell like her foods started digesting better again, and like she got so much more stable like we could give her insulin and she wouldn't crash later. So it was like this whole magical thing, but it was just kind of nuts to figure out

Scott Benner 54:56
how long did it take for the inflammation to die down? and free to find some stability.

Julia 55:02
Um, so the crashing part where the inflammation died down was a couple of weeks. And then it was only about like, maybe three weeks after that, that her insulin needs started to come back up and staying up where like you could see that like she was starting to heal.

Scott Benner 55:24
It's very interesting because it's incredible. Yeah. Hey earlier we did you misspeak or did you mean to say stump me? Because aren't included? I say you said stump me instead of Tommy. You start to say stomach then you said art Arden says that though? She says her and her girlfriends. They say My stomach hurts.

Julia 55:42
No, I totally meant to say tummy started to saying stomach.

Scott Benner 55:45
You can you can use it if you want the girls love it here. So.

Julia 55:50
No, yeah, I'm just talking too fast.

Scott Benner 55:53
No, that's okay. Stop me. If you made me feel at home.

I was like, I'm glad I could make you comfortable. Very nice.

Well, that's incredible. So yeah. Are you all like gluten free in the house? Now we're just her. So

Julia 56:08
we're mostly gluten free. Like we did glutened our kitchen like we cleaned everything top to bottom, like, you know, silverware drawers, or like big crumb catchers, apparently. So like, we did all that kind of stuff and got rid of everything, like cleaning the kitchen, like head to toe. And so it's like de glutened. But I do keep some gluten free stuff on hand for like my lunches and stuff that like, won't get crumbs everywhere. You know, like, I have some, like tomato soups that are microwavable. And some like microwave thingies and you know, stuff that we wouldn't give to her by mistake. But for the most part, our house is gluten free and our meals are bound her are gluten free,

Scott Benner 56:46
and the benefit for you or your husband.

Julia 56:50
Um, so for me, it's kind of backwards. Because I've I've had like a really weird journey with food. Like with having the gestational diabetes diagnosis, like feeling like I can't eat after that, because Oh, you're gonna get type two. So I was just kind of recovering from that type of approach. And then she gets a celiac thing. And I basically feel like I can't eat around her. So when I'm not around her, I have way too many snacks because I feel like later I can't like, what am I going to eat? You know what, I'm going to have an apple later gay?

Scott Benner 57:31
Would you sell it or what's happening to you an eating disorder or just

Julia 57:35
I think I'm just kind of struggling a little bit. I don't know, maybe it really messed with my head when I had gestational. And the the educator told me that I had an 80% chance of developing Type Two within 10 years. Like so then, like, and I was also breastfeeding at the time, like right after that. So here I was trying to eat super, super healthy. And I was breastfeeding soy and dairy free because Cora can't have dairy. So it was like this whole thing, like I couldn't get enough carbs in my body. So I would just like I was just like shedding the pounds like crazy. And I wasn't a huge person to begin with. And I had to lose weight to get pregnant. Because I had PCOS. So it's like I had already lost weight to get pregnant. And then you know, I had the baby and the baby weight came off easily. And then I was breastfeeding. And it was a whole big thing. So me trying to ward off type two was like borderline eating disorder. But I was eating and I was eating really healthy. But for the amounts that my body needed. It just wasn't enough.

Scott Benner 58:46
Julie, you know, there's a the doctors think that PCOS might be autoimmune. Oh,

Julia 58:54
really? Yeah. That's fascinating and upsetting.

Scott Benner 59:00
Sorry, I didn't want to be the one to tell you're like this is definitely my husband's grandmother's fault. Yeah, no. Yeah. Can you talk about that for a second? I know that's a left turn for you. But when did you realize you had PCOS? And how do you manage it?

Julia 59:17
So I my husband and I were trying to have a baby right after we got married. And my periods were starting to get really irregular. And I was really I had struggled with my weight for a while like I wasn't big, but I could not lose weight, like exercise and eating reasonably did nothing. Like I would lose like maybe a pound a month, which is just kind of a frustrating thing and makes it really hard to keep up with the diet. So that was kind of tough. And so you know, I'd go on these spurts where I'd lose weight and I've gained weight and then what I ended up doing to be able to get pregnant and like regularized my period it is I did the keto diet for about a year. And you know, I had a couple of miscarriages when We were trying, which is, you know, a risk with PCOS too. But yeah, the keto diet got me to a point where my periods were regular enough that I couldn't get pregnant and stay pregnant. And then I had Cora and it seemed like the pregnancy. First off, like negated the effects of going off of the keto diet somehow, miraculously, because if you go off of a keto diet and start eating carbs, again, like you just pack on the pounds, well, the pregnancy kept me from doing that somehow. And then it was just kind of a whole reset button. And like my PCOS seemed to like pretty much go away after I had four. And I think part of that is, you know, breastfeeding is a huge workout for the body, too.

Scott Benner 1:00:45
But so interesting, I can't get I have trouble getting straight answers about PCOS out of people, like in general, you don't I mean, even when you talk to doctors, like, Well, we'll see. You know, it's yeah, it's interesting, what they don't know. And, you know,

Julia 1:00:59
my doctors never gave me a huge straight answer out of it. They, I had switch during that whole trying to get pregnant thing. I started a new OB. And she said, yeah, if you have irregular periods, you probably do have PCOS. And that's like the most I ever got out of it. Like they never ultrasounded me to see, you know, like, Okay, how many sisters she have on her ovaries or anything like that? They said, Yeah, you probably do. And that was it. Like there was no real support for that. They did have me try Clomid a few times to try and get pregnant and kind of force and isolation.

Scott Benner 1:01:38
Sorry about that. I'm not sure what happened there. You said they asked you use Clomid too. And then oh,

Julia 1:01:48
yeah, so the Clomid is to like forcing ovulation because if you're not getting a period, you're not ovulating. That's why you can't get pregnant with PCOS. Half the time.

Scott Benner 1:01:58
Gotcha. Wow. Yeah. I just know that. It's frustrating to hear doctors go oh, you know, that's probably that. Okay. See you like, Wait, why write no more? You don't have other thoughts or ideas or no, just like, oh, that's tough luck. See you later kid. Yeah. And that's how it

Julia 1:02:17
was. And the other thing that really bugs me is when I had that miscarriage from the Clomid pregnancy, I had to ask my old OB about my progesterone levels, because I had read that, you know, sometimes you can't maintain a pregnancy because your progesterone doesn't you don't produce enough progesterone, which, you know, with PCOS and hormone imbalances, and she said, Oh, progesterone only helps you get pregnant, it doesn't matter after you get pregnant. Guess what my no OB did right after I got pregnant. She tests my progesterone to make sure that it's high enough to maintain a pregnancy.

Scott Benner 1:02:56
Nothing like getting completely conflicting information from places you just don't think should be confused about what they're saying.

Julia 1:03:04
No, no, not at all. It just I mean, I already kind of knew I was right to leave my old OB. But yeah, that definitely from that up for me,

Scott Benner 1:03:12
I hope that's comforting to people who think like, Oh, my endo doesn't know what they're talking about, you know, I mean, at this point. I mean, at this point, it's hard to get, I've spoken to people, and I've learned that it's hard to get good care for your thyroid condition. It's hard to get good care for your hormonal problems. It's hard to get good care for your diet. It's, I think it's just hard to get good care. Yeah, you know, I think people need to stop thinking that doctors are specifically not good at one certain thing. And maybe it's time to realize that we're only 100 or so years into modern medicine to begin with. And we don't really know a lot about a lot still. Yeah, you

Julia 1:03:53
know, you know, the interesting thing I found around here is, so within a 25 minute drive, I have like four different health systems I could go to. And you know, we're not like a metropolitan area by any means. So you know, we have a lot of health care options, like the one that's closest to me, it's really hit or miss on doctors. If I go to the one where I send Cora much better chances that you're going to get a good doctor. And then for chorus, like specialty stuff, we send her to the nearest big city because there's like a guaranteed chance at that children's hospital. She's gonna get a good doctor. Yeah, it's just it's kind of like this whole little like range of, okay, where do you go for what you need?

Scott Benner 1:04:39
Yeah, it's a game you almost have to play and how do you know how to play that game even? And how much wasted time is there when you see doctors who aren't helpful at all? And then just say things to you at the end? Like, hey, you might have PCOS. See you later. Like go great.

Julia 1:04:53
Right? You know, I feel like that's a huge benefit. You know, having a type one kid in my 30s because if I was like, 1920 having a kid, and then all of a sudden she has type one. I wouldn't know what the heck to do. Yeah. Yeah. You know, like, I feel like I at least have a little bit of life experience to like gauge those situations, you

Scott Benner 1:05:13
don't just pick the first thing someone says to you and go, well, that must be true. And now we're done. And you know, and then when it doesn't work, go, oh, diabetes, just confusing. Right? You know, just, I, it's one of the things that had bothered me constantly through this whole thing, and probably led in some way to the podcast is the idea of like, I don't I don't understand why when people get information that seems conflicting, they just nod their head and go along with it. Like, it just never made any sense to me. So

Julia 1:05:42
it's the whole questioning doctors thing. That's another big thing that took a long time for me to get my head around is the whole, you know, insulin isn't a you know, something like take as prescribed. Yeah, no, that's, you know, making your own adjustments thing. Like, you don't have to call your doctor and get permission.

Scott Benner 1:06:03
Yeah, count carbs. Give insulin, if that works good. If it doesn't, that's just diabetes. Well, we'll try again at the next meal. Like, right, that's, that's what we're gonna do. We're not gonna put any effort into this whatsoever to figure this out. Right? Yeah. Fascinating. Really. Julie, is there anything that we haven't talked about that you wanted to,

Julia 1:06:21
I guess the only thing is like the end of her honeymoon. So after she got the celiac diagnosis, it seemed like, you know, it was kind of starting to come to an end. But then she also when she started the pods, which you know, is going to be a little bit of an adjustment. But she also started to get chronic ear infections. So we had like, two months where she would have like back to back ear infections and the stuff the antibiotics wouldn't take him away. And she's also got the pile on of her party is now digesting her food, and all of that. And, you know, we're also trying to figure out a new system, which was pretty minimal adjustment in the scheme of things. But that's what really seemed to mostly kill her pancreas is like, all of a sudden, she needs so much more insulin for these infections and the food and everything else. That honestly, I mean, we're a year and a half in and someday she'd goes down to that point. Oh, five Basal great. And I don't know if it's still her pancreas, like producing a little bit or what, you know, but it's just like, we're not having a really clear cut time with the honeymoon on everything. But she got your tubes now. And that was like the best thing we could have done because now she doesn't have like an infection every other week.

Scott Benner 1:07:39
Her ears are draining better now. And not getting Yeah, and all that stuff. Okay. Did they give you any ideas? There's something about the formation of our ear canals, or did they talk about it at all?

Julia 1:07:49
I'm not really they said she probably has big adenoids, but they try to do that your toilet, your tubes first before they you know, do the more invasive taking out the adenoids. So they think that's probably why because she apparently has big tonsils, too. Okay, that can usually mean big adenoids,

Scott Benner 1:08:11
interesting. And that caused kind of a blockage and your ears don't train correctly, and you get infections.

Julia 1:08:16
Yeah, yeah. But actually, you know, since you had mentioned the auto immune thing with gestational diabetes, I also wanted to mention, like on a somewhat unrelated note, but an interesting tidbit. So when you have a baby with gestational diabetes, they track its blood sugar for a few hours after birth. And apparently normal range for an infant is 50 to 92. So I was looking on Cora's charts to you know, check a couple of her numbers, because I really wasn't sure where she had started out with some of those numbers. And I thought the blood tests I was seeing were from diagnosis, but apparently they were from birth. And like her first one, after she was born was 43. And they were checking every couple hours and what the lowest one she had was 24. And then once they finally got her up, over 51, like they just stopped checking. Okay. Yeah, isn't that bizarre though? 24 for a newborn.

Scott Benner 1:09:22
But did they give you any reasoning behind your ask?

Julia 1:09:25
So what they said is, you know, with the gestational that you know, sometimes kids have little hypoglycemia, but they also said, you know, more skin to skin, that kind of stuff. Well, I had a 36 hour labor, and then birther at 8pm Like, you know, I wasn't holding her too much doing skin to skin like I was gonna go to sleep. So that was part of it. But really what helped was they put her in the little baby tanning bed, you know, under the UV light. Yeah. And that's what really kind of ended up bringing her shiver up

Scott Benner 1:10:00
Interesting. Wow. Yeah. Just in time to. I don't know, it's it's she's an interesting and intricate story, especially in such a short amount of time.

Julia 1:10:12
Yeah, she's definitely kept me on my toes. And by the way, so with all of this madness going on her last day when see is 6.9 and her two week GMI is 6.4. So, like you guys, you've really helped a lot with the whole figuring this stuff out. And even though it seems like I should be afraid to give her insulin because of everything that is went on, you know, we were really able to maintain somewhat decent numbers throughout that.

Scott Benner 1:10:41
No, I mean, I think just your your focus on limiting the very high highs and understanding that at the moment, it doesn't seem like you can stop these drops from occurring, but you can stop them from being dangerous. I think that's what's keeping you in the sixes. It sounds like Yeah,

Julia 1:10:58
yeah. And I mean, now she needs a lot more insulin. So it's a it's a little bit of a different game than it was but yeah, I mean, she was around seven for most of them for honey.

Scott Benner 1:11:09
You're a good mom, Julia. Thank you. That's what I keep thinking while we're talking like this is a lot. And you're you seem like you're doing really well with it. So I'm gonna ask, Are you doing well? Are you okay?

Julia 1:11:22
I'm pretty okay. I'm a little bit of an anxious person anyway, like, not, not to a horrible extent. But you know, if you try for so long to have a baby, and you have struggles having a baby, the whole idea of keeping your baby alive after you have that baby is pretty, it's a pretty strong feeling. So, I mean, I've always kind of had that. So hyper vigilance when it comes to Cora came before the type one. Okay, um, so it's one of those like, I'll never, you know, turn that side off and just relax to a degree. But I think in general, I'm doing okay, like, I go in spurts where it gets to be a little bit too much. But, you know, I mean, I have a toddler with type one like, it's, it's gonna be too much sometimes. Yeah,

Scott Benner 1:12:11
no, I agree. Is her name Cora or is it Coraline? Cora, Cora? It's really pretty. Yeah, of course. All right. Well, I appreciate you sharing this with me it did it help talking about it. Like, did you feel good about the fact that you came on and did this, I always wonder why people want to come on. Like, for clarity. I'm gonna pull up my calendar. Okay. Today is Thursday. And if I count forward, let's just do two weeks 123456789 I'm making I'm recording 10 times the next 14 days. Wow. So I there are times where if I just get out of this month, I'm, I'm just, I'm just packed, like, I'll do at least 15 recordings a month. And then I keep my Fridays and Mondays open to do editing, and they end up getting filled with, like, you know, interviews that pop up at the last minute, like I did, I'm sure like, you know, Dexcom excuse me, HoloLens. Like I apologize, you know, or Jenny will be like, hey, I can work on Friday. And we'll come in and do stuff like that. So I record 15 to 20 times a month. And I'm always like, just grateful that people want to tell their stories, but I never understand completely why they do.

Julia 1:13:38
Well, for me, so whenever I would ask a honeymoon question, or I would see other people ask honeymoon questions online. People would just be like, oh, yeah, that honeymoon. That's a real, you know. And so I just was always kind of frustrated. Like, there's not a lot of helpful information. It's just like, oh, well, maybe you should just turn your kid high so that they don't fall. And I don't know, I just wanted to share her story, because it's such a unique one that, you know, maybe it could help someone because let's face it, she's got a lot of stuff going on. And you know,

Scott Benner 1:14:16
yeah, yeah, I Well, I'm glad I'm thrilled that you did. Like I really am. I just I always wonder like, Why do what makes people want to know, and I don't ask very much, but yeah, I just thought it was interesting for you to ask. Thank you very much. I can't thank you enough for doing this rolling.

Julia 1:14:35
I'm glad because it sounds like you think it's a good show. So I'm glad about that.

Scott Benner 1:14:40
They're all good. I'm incredibly good at this.

Julia 1:14:43
I know you are but you know there's always a little bit of insecurity like who is mining going to be just boring?

Scott Benner 1:14:50
Remember at the at the beginning before we were recording, you said I wasn't sure if I should come on like really prepared with what to say or not. But do you see that had you if you would have just stuck to a list. We don't even get to your PCOS.

Julia 1:15:03
Yeah, that's true. Yeah. And yeah, that is one like people don't talk about because I mean, there's a lot of ugly side effects to that too, like facial hair, for instance, like, I still have to go get lasered. Yeah. Even after having had laser done before,

Scott Benner 1:15:18
right. Yeah, no, I mean, yeah, people don't want to share that stuff. Because it's, I guess it's, they think of it as embarrassing, I'm assuming. But the point is, is that everyone else listening? They need to hear you say I have PCOS. They need to hear you say, you know, they need to hear me say Arden's trying not to eat gluten for a month to see what happens like because it's the only way you figure this stuff out. Because this, it doesn't come up in doctors offices, most of the things that we've tried for Arden throughout the years for, you know, any number of things, or thyroid or diabetes or any other problems are from us, like it's us going into a doctor's office and saying, What do you think about us trying this? And they go, Hey, that's worth it. But you don't mention it going in? You don't come out with that. They don't they don't say oh, you know, you should do you should try this. They just I don't know what's it's not doctors. And Julia, I'm not I'm not saying it's doctors. There's something about the way it works. It's not, it's not completely right. Do you know what I mean, by that, like, there's something about the way we see physicians and the time we spend together, or the lack of time that they spend together, there's something not right about it, you shouldn't know more about a thing that you can't understand than the person who has a chance of understanding it. And yet that happens over and over and over again. So I think these conversations are the best way to plant seeds in people's heads. And hopefully, they'll walk run into a doctor's office one day and go, You know what, I need a scope to see if I have celiac, or I need you to do a test to see if I have PCOS. Or, you know, whatever. Because people shouldn't say things to each other like, Huh, well, that's crazy. So you

Julia 1:17:05
know, honestly, that's so much of the approach with honeymoon to, you know, sure. It's like, oh, yeah, that's crazy. That's not suggestions.

Scott Benner 1:17:14
I think if you and Cory can stay alive long enough. This will end well. Thank you. Wonderful.

Julia 1:17:21
Yes, exactly. No more

Scott Benner 1:17:23
to it than that. You don't have any, any suggestions whatsoever, even just hearing you talk about the way the digestion changed after going off of gluten. I imagine it just that sentence will help somebody so I you know, I love these conversations being conversational and not being bullet pointed. Because you don't know even though it's your story. You'd if you knew all the parts about it that were important for me to hear, you would have figured out things already that you haven't figured out yet. So you get I think they just need to be spoken about out loud so that you can really hear it. I think it'll help you having said it out loud. I hope so. I think I think I think it will so Alright, well. Thank you very much. Sorry. Thanks, God have a good day.

Well, a huge thanks to a huge thanks to Julie of course for coming on and sharing that great story and having this chat with me. I also want to thank Dexcom, makers of the Dexcom G six continuous glucose monitor, and remind you to go to dexcom.com forward slash juice box to see if you're eligible for that free 10 day trial of the Dexcom G six. And if you're interested in the Omni pod five, or the Omni pod dash, you want Omni pod.com forward slash juice box links in the show notes links at juicebox podcast.com. When you click on my links or type them into a browser, you're supporting the production of the Juicebox Podcast and keeping the show free and plentiful.

Listen, everybody, I usually just say at the end something like what I usually say, well, thanks so much for listening. I'll be back soon I do that whole thing. But every once in a while I don't want to just like blurt out a sentence. I want to tell you about how amazing it is that you listen to the podcast and tell you why. I'm gonna give you a couple of numbers here. It's gonna freak you out a little bit. I'm gonna find these numbers for you. I should have found them before I started talking. I know, but I didn't. So anyway, this year, the podcast will have something like 5 million downloads. That's a pretty accurate number. It's astounding to me. I'm not gonna lie to you. I think the first year the podcast had 25,000 downloads 25,000 Like in the whole year. And now 5 million and next year if trends continue. I mean it could be twice that. And the reason I'm sharing this with you He's because it's up to you. Right. And it's because of you. Podcasts don't become popular because they're good or because they're valuable, as crazy as that sounds. I mean, I think that's why people share them, but it doesn't just magically happen. They grow and find other people solely based on word of mouth. And, and that's why I'm taking a moment here to thank you. So, a lot of downloads for a year, especially for a podcast that's in such a specific niche like this one is. So thank you very much for listening, for sharing and for supporting the sponsors. I genuinely enjoy making the show. I love that it helps people and I can't believe that it helps my family pay my bills. When I look back on my life, I just never thought I'd have a job like this. And the truth is, I wouldn't if it wasn't for you. So thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

Small child deluded insulin honeymooning mom has PCOS kid also has celiac.

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