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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 1105 That Juicebox Podcast

Adams two year old daughter was diagnosed at nine months with type one diabetes Addams family has a history of autoimmune conditions. Adam has three sisters one was celiac one with graves, and the other with Hashimotos. Adam has just tested positive for celiac, and they've had his other son tested as well. Most recently, Adam has a Hashimotos diagnosis of his own. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan. Or becoming bold with insulin. I wouldn't normally tell you this, but Rob edits the podcast from wrong way recording. And he gives me a notepad of like his interpretation of the show. And I use, I don't want to give it away, but like I use some of his words, and I'm introducing the show and stuff like that all the time. But I just realized here he said, This is a very cool and interesting story. Adam did tons of research got a CGM before they left the hospital and tiny he goes, Rob goes on and on here. But anyway, Rob thinks this is a great one. So I hope you do too. Also use my link drink ag one.com/juice box and save 40 percent@cozier.com with the offer code juice box at checkout. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. This episode of The Juicebox Podcast is sponsored by us med U S med.com/juice box or call 888721151 for us med is where my daughter gets her diabetes supplies from and you could to use the link or number to get your free benefit check and get started today with us met

Adam 2:08
my name is Adam. I have a two year old daughter who was diagnosed at nine months old so that was about a year and three months ago. I also have a son who's four years old so yeah I think that's

Scott Benner 2:22
your your daughter's the type one your son have any autoimmune stuff.

Adam 2:27
So my son doesn't he actually got tested for celiac disease and has the antibodies but he hasn't he didn't have like the positive markers yet so it's like one of those things where he might become celiac at some point but we're not sure Yeah, okay. So I guess that leads me into after Brynn was diagnosed and kind of dug into like the autoimmune history our family and found there was a lot more than than we thought. So my sister has celiac my three sisters so one has celiac and like my other sister has Graves disease and the other one just found out she has Hashimotos so like a few months after Brian was diagnosed, I tested for celiac and thyroid and my celiac test came back positive. So now I am a celiac for like almost like it was like last November. And then my my thyroid levels came back in range. But then like after listening to your, all your episodes on thyroid, the in range value was like I think put it down like 2.3 and I had some nothing like really serious symptoms, but I had some things like after listening to all the symptoms and like reading more about it or I was like, Okay, I'll probably check on this later. But I didn't I didn't follow up because I had the celiac diagnosis and I had to get like the endoscopy scheduled and all that. But then like five months after that I tested thyroid again and it was like 3.25 So I was like okay, I'm I'm feeling some of these symptoms. And I got I got officially diagnosed with Hashimotos like in February this year. So like four months ago,

Scott Benner 4:00
I had a slightly over two TSH, come back the last time I had bloodwork and there's actually a script downstairs, I have to go get blood work done again. They're testing it one more time. So I'm not sure what

Adam 4:12
yeah, it was 2.74 and then 3.35. And then I was like okay, I want I want to get this treated because the the biggest symptom that was scary was I was starting to like just stand up and feel like really nauseous like kind of like dizzy or lightheaded. And I was like, Okay, I don't want to be like carrying one of my kids and just like collapse or something. So i i Finally it was like I gotta take care of myself a little bit and get this figured out for you. But I have been I've been adjusting the dosage. So I started on 25 like fmcgs and I'm on 50 now but like every six weeks we're adjusting and slowly going up.

Scott Benner 4:47
Are you noticing your symptoms lessening? Yeah,

Adam 4:51
I think that like the dizziness nauseous one that was like the scariest one that one. I think I had like one spell since I started the night. Vacation. So it used to be a little bit more frequent. There's a lot of things that are hard to tell if it's like the celiac or the thyroid because I, I was gluten free since November, and I started the thyroid medication like middle of February. So there's like some symptoms that overlap there. I have like, really cold hands and I had like dry hands. And I usually got like pretty bad headaches, like quite frequently, like maybe like once, once or twice a month. And those really have subsided, so I don't have a lot of those anymore. But it's I wouldn't say I had like serious symptoms for either one. It was just like a bunch of minor stuff that like, it was just normal to eat because I think like, you just kind of live with what you have. And yeah, other priorities kind of got in the

Scott Benner 5:43
way if it wasn't for brings diagnosis, you would you have ever looked into this, do you think?

Adam 5:47
For sure not like, I think maybe the gluten thing like I, my wife has probably said something in the past, like maybe you should get tested out like, but I never had like, what I never thought I had serious symptoms. But once I cut out gluten, like I started noticing a lot of like, a lot of things get better. So it was like, it was just normal for me for a long time to just feel that way.

Scott Benner 6:11
And can I have some specific examples of that? How did you feel?

Adam 6:15
I guess like after eating, I would feel full like what I would describe it as just feeling really full sometimes. And it wasn't like every time I ate but I would just kind of feel like uncomfortably full. And I guess that's like one of the big symptoms like I always read it as feeling bloated. I I don't know if I like downplay the symptoms, but I never was like, you know, I have to go sit down or something because I'm so bloated. And like after Brennan was diagnosed I talked to my sister about celiac and she she had much more severe symptoms like she would get rashes and she would feel like so full she couldn't. She couldn't like she'd have to go lay down. So I never had anything that severe. What

Scott Benner 6:52
kind of so yours was just feeling full, but you didn't have like, what have you noticed clear up since you've cut gluten out?

Adam 7:01
Oh, like, bowel movements definitely gotten better. I know this kind of kind of weird to talk about but I don't mind. So. Like the the kind of like texture of the poop. I don't know. There's something I don't know if you ever heard it called like a brown marker poop. It's like where you just keep wiping and it seems like you're just wiping a marker. Sure. So that was like kind of normal for me. And in one of your episodes, you actually talked I think it was like Arden's friend or something. Talked about having a ghost like a ghost poop or a ghost wipe your butt or something like that. Yeah. So I don't, I don't think I ever had that. Like before I stopped eating gluten. So when I like first had that I was like, Oh, wow, like, I don't need a white. Like this is like cool. Like, so like that was like something? Like, I just thought it was normal. Like it had just always been that way as long as I could remember. Okay, I want to now it's like much, much better.

Scott Benner 7:59
I want to give Assange that credit. She calls it a spooky Dookie. Oh, spooky. Do you have to start using that because there's nothing there. I mentioned ghost. At some point. I might not have done a good job. The first time I talked about it just popped into my head. Exactly. I can hear her voice. You know, because you wipe it there's nothing there. Yeah, that's spooky, dude. Yeah,

Adam 8:19
so that like, I guess that's supposed to happen a lot more than it did with me. I just like hadn't remember that happening before. But it's kind of crazy that like, he just, it just becomes normal for you. And you just you don't know what's different, really, because it's not something you like talk about all the time. And it wasn't like I had, like, every time I went to the bathroom, it was like 20 wipes. It was just like, you know, it was always like a handful. And it was just never that good. So it wasn't like diarrhea, like runny or anything. But it was just like, you know, kind of sticky and soft.

Scott Benner 8:49
Yeah. Now I understand you're saying like you're trying to wipe off a marker.

Adam 8:53
It still happens. Like I think I have a gastroenterol hydrologist now and she thinks like, I might have to try cutting out dairy or something because I might like celiac blood levels are still a little bit elevated. But it's kind of hard because I have young kids and we don't we don't like stop gluten for them. So like there's a chance of cross contamination and, and all that. So just trying to pick apart all of that stuff and see like, what's the cause there?

Scott Benner 9:18
Do you have any improvements with like energy or clarity, mental clarity, anything like that?

Adam 9:26
Maybe a little bit mental clarity. I'm always getting like not enough sleep with the kids. So like, I've always had a little bit of sleep deprivation, but I think I think I definitely have less like brain fog. Yeah, it's kind of hard to quantify and also add a little bit better also

Scott Benner 9:46
all Yeah, also your TSH is moving up so you might not you might not know exactly what clear feels like yet, but you sounds like you're getting close to it.

Adam 9:55
That's the hard part and like I also lost like 15 pounds out of nowhere, like right around the celiac diagnosis. So I don't know if like something triggered for me and like the thyroid started kind of going out of whack faster or something. But there was like a brief thing where I lost like 15 pounds in like a one month timeframe without really changing my diet. And it was like before I had fully cut out gluten because I had just gotten the diagnosis. Okay,

Scott Benner 10:21
I've seen people get hyper before they get hypothyroid. So like, they also lose a bunch of weight, like while their thyroid is like going wonky. You know what I mean?

Adam 10:33
Yeah, that could be Yeah. But then like my thyroid level, I checked in August, and it was like 2.7. And I lost all that weight in like October, before the before I cut out gluten. Yeah,

Scott Benner 10:44
it can, it can hit you so quickly. I've seen like, right before we right as we were diagnosing my son with Hashimotos. His thyroid went from like in the twos to like in the sevens. And then they did a repeat test, and it was back down lower again, but not that high. And it was it like so it kind of I don't want to say dances around but like it's almost like there's, like fits and starts and stuff as it's kind of like happening. And I've seen some people I've seen I'd be very specific. After Kelly had Arden I remember joking with her. I'm gonna have to get you like pregnant a couple of more times because you look like a supermodel. And like it just like after, which was weird. Like she just had a baby. And she was just so lean, like afterwards. And it was I think she got hyper before she got hypo. And so she Yeah, and I

Adam 11:38
weighed in there. Like, that's weird, because that's usually the opposite like not Hashimotos that's usually the graves are right. thyroidism

Scott Benner 11:46
Yeah, I wonder if it doesn't bounce a little bit while it's settling into his new normal. Anyway, that was very dropped.

Adam 11:52
I dropped like that. 15 and I've been staying like pretty steady for the last like five months. So just kind of weird that it happened. Oh,

Scott Benner 11:59
no kidding. Well, yeah, I mean, that was not very technical. And I'm not a doctor at all. So bla bla bla. Yeah, of course. Okay, so anything on your wife's side or she like an island over there going, Oh, I'm all on here. Nothing's happening to me, or does she have stuff? Nothing

Adam 12:15
like super serious? Her? Her dad got his grater removed. So there's some thyroid stuff. But nothing that like really stands out. Okay. on her side. It's like my family has like a whole like laundry list of autoimmune stuff. And hers is mostly mild compared to that.

Scott Benner 12:34
And you're originally from the middle of the country.

Adam 12:38
Yeah, Wisconsin. Okay. So when I yeah, that's where all my family's from.

Scott Benner 12:42
Got it. Okay, so your daughter is diagnosed? She's nine months old? Or nine months ago? Yeah.

Adam 12:47
Nine months old. So like a year and three months ago? I think it is how did that present. So it came on really fast. We thought she had was like flu like symptoms, almost like she, she had a little trouble breathing. She was really lethargic, like wanting to sleep the whole day. And it was just like, in the span of a day. So like around I think like around lunchtime. We noticed like something's wrong. And I we thought it might just be the flu. We've been getting like sick on and off a little bit. She was having like a hard time breathing. But it was it was weird. It almost sounded like she was congested. But she wasn't congested. Like she could you could breathe clearly. But she was doing like those kind of heavy, heavy labor breaths. Yeah. So we, you know, we did that a rest for most of the day. And then it got to be like around 10pm at night. It just got like, way worse really fast. So like, her breathing was much more labored. You could tell she was like, struggling to breathe. Her lips actually started turning pale. And that's when we were like, Okay, we gotta like, we gotta go to the emergency room or do something. So we took her. And this was like, after we had put my other son to bed. And we don't have like family nearby that can like come and watch the kids. We had to wake, wake him up, get in the car, take them to the ER, take her to the ER. And you can only bring in like one parents. So I stayed in the car with my son and my wife went in. And I think like pretty quickly they did a blood draw and found the glucose I think it was 802 So she was in decay. Her veins were like so small and shriveled that it was so hard for them to get the IV in I remember like it taking a long time while she was in the hospital. But we went to the ER by her house and they they diagnosed it and called the Children's Hospital. And they couldn't actually give her the insulin because they they had to do like a dilution and they needed like some something like potassium or something to help slowly bring her down. So we had to she had to take an ambulance from from that er to the Children's Hospital. And then I guess that's, that's most of what happened. She stayed in the ICU for three days. Like slow We tried to level her out. And then we spent one day in like the Endo, the regular endo department. And then she went home after that. Wow, pretty quick. Yeah, but it all it all came on really fast. Yes. It was not expected at all. Well, when

Scott Benner 15:12
you said she was breathing oddly, so those are those who small respirations? Probably. Yeah. And then

Adam 15:18
shortly after, after learning more about it, that's exactly what it was. Yeah, I

Scott Benner 15:23
thought I thought for sure. You're gonna say she had DKA. Then when she got there, but they got her out of the hospital pretty quickly.

Adam 15:30
Yeah, I think it was for four days total. Maybe we got there like late Sunday night, I believe. And she went home on Friday.

Scott Benner 15:38
Nine months old. What could she have possibly weighed at that point?

Adam 15:41
I don't know. Maybe like 18 pounds. Yeah. 20 pounds.

Scott Benner 15:45
Did she lose any weight?

Adam 15:46
But the weird thing is she hadn't she hadn't gone backwards. Like she had continued growing the whole time. And her agency diagnosis was an eight so quick. Like it was a really fast onset. Yeah,

Scott Benner 15:58
fast onset, right to decay, like zoom like that. Looking back. And

Adam 16:03
it was like the day before she was completely normal and fine, like running around? or crawling around, I guess. Yeah. She was like a very mobile baby.

Scott Benner 16:10
That's something okay. So now, I mean, at that weight. How do they? I mean, how did they even describe to you what you're supposed to do? So

Adam 16:19
they gave her she's on diluted insulin like a you 10 mix. So 10% strength. And she got thankfully, she got the Dexcom G six before she left the hospital. But they give you like, these conversion charts, which is basically like if she, if her blood sugar is like X amount, then use this. It's like a correction factor. But before they really teach you how to do the math, they give you like a chart that's like if her blood sugar is 200 Give her like this amount of insulin, right? And it's all like using the diluted insulin factor. And then you just kind of she was on 11 year for basil. And the original dose they gave I think was too much in the morning and not enough at night. So we had to kind of tweak that over time. But yeah, it's it's they don't they don't help you a whole lot. They just kind of give you the the conversion chart and say like, when she eats this much, they just like guessed on her carb ratio in the beginning. Yeah. And we went with that. But at the time, she was like, she was only eating like 10 carbs a day, maybe like she was still breastfeeding. She was never, she didn't really get into the solid foods that much. So that was like one. One thing my wife noticed before she was diagnosed and we talked to like her pediatrician about it. She was never like, my son was super into food. He would eat like crazy amounts by nine months old. But my daughter was a little bit slower on the solids. But yeah, I think that's that's kind of what they tell you is Yeah, it feels like the initial doses, and you have to adjust it. Yeah,

Scott Benner 17:46
it feels like they're giving you just like the hospital, like what they would do if you were in the hospital that like Well, yeah, for sure.

Adam 17:53
And it was like, correct. Unless she's above like, 280 or something. Sure her body is so sensitive to insulin. Yeah. And like we we quickly realized that was like not good enough and try it. Try to get better.

Scott Benner 18:05
I see. Yeah, I just I had an experience recently with someone in the hospital who was using insulin. And the idea was, if they hit this number, then they get this much insulin. And I saw one time, whatever the number was, you know, if there were 146, then they can have insulin. That test came back 145 Like literally, and the nurse was like, she doesn't get any insulin. And I'm like, I'm like test again. She'll be higher. You know, like, it's just you want you want her to have insulin. And I was like, I mean, I don't want her blood sugar to be 145 or 146. Yeah, the nurse didn't even understand that. The nurse is like, no, no, there's a number here. And if you go over that number, then I give you this insulin. And that's it. That was the level of and it was a great nurse, by the way, who was helping with a lot of other things, and really terrific, but when we got to this subject didn't know what they were talking about. Like, like beyond beyond the hospital and how the hospital handles it. So it's like it just occurred to me like it they sent you home with their instructions, basically what they would do if if your daughter was in the hospital.

Adam 19:11
Yeah, I mean, we had like the diabetic training that they give where you like, you practice doing like a blood figure stick and you give a shot or whatever, into an orange or whatever. So he had like the day or two of training, but it was kind of hard because we had my four year old son who is at home, and my wife was with my daughter in the hospital. So I was I was coming back to the hospital like at night after he had gone to bed and we had someone watch him. So I was like going back and forth between the hospital and I was getting like training at different time that my wife was but we figured out eventually, just Yeah, well

Scott Benner 19:44
and it's trial and error, right there really is no other way to figure it out. Yeah, we

Adam 19:48
pretty quickly like the numbers they gave us weren't working and like we were trying to go back and forth with the endo team but like I was just like we have to do like less insulin here more insulin. They're really we changed in ourselves like right away.

Scott Benner 19:59
What was the indicator that told you like you said, we knew but what showed you like this isn't right where they numbers like how did you know what to shoot for blood

Adam 20:07
sugar numbers, so we would see her she was still breastfeeding, which hits. It hits like pretty hard initially, but also has like fat and protein. So it kept her high. And she would breastfeed like throughout the night. So like she was getting milk at night and her blood sugar was like, constantly going up, we had our alarm set, like really high at that point, I think they were set to like 300, which seems ridiculous now but with with like diluted insulin, we couldn't correct unless she was above like 280 or something. So we set our alarms there and we're correcting. But we knew like the basil at night, because it's really hard to wake up a baby and give like an injection. We kind of fix that by just cranking up her basil at night. So her level mirror was given like once in the morning and once at night. So her nighttime dosage was like one and a half units and our daytime was like a half unit. And even the half unit during the day was like a little too much. I think we were eyeballing like quarter units for a while the beginning but

Scott Benner 21:01
overnight, she could handle heavier basil because of the breastfeeding.

Adam 21:05
Yeah, exactly. Wow. And she wasn't eating as much in the day. So it was like for her baby. And we are because of the diluted insulin like we can only dose if she ate like four or five carbs. Like even with diluted we like we couldn't dose for like really small meals and she was only eating like four or five carbs. So sometimes it'd be like even the smallest dose you could do in a syringe was too much.

Scott Benner 21:29
wishy growing well.

Adam 21:31
She definitely started eating better after getting insulin, it took a little while. But she She's been like on a good growth curve. Like she's always like, you know, the 75th or 80th percentile. So she's like above average weight. Which is like one of the reasons why we didn't kind of suspect something earlier. She's never like slowed down at growth. But that's that's kind of why we push for a pump so fast is because we couldn't, we couldn't give small enough dosages with with a syringe even with a 10% Insulin right. And you know, we got they got the whole story like you have to be on syringes for six months or whatever before you can get the pump. But we we really like push back and we're like I was calling like almost everyday like telling them like this doesn't work. She would have like breast milk before her nap. And she would go to like 350 or something and we don't want to like wake her up from her nap and give her insulin because then she doesn't go back to sleep. We had like a whole list of reasons why we needed it. We convinced them eventually. And got I think we got into the pump like a month after a month and a half after her diagnosis. So we have the Omnipod dash No.

Scott Benner 22:39
diabetes comes with a lot of things to remember. So it's nice when someone takes something off of your plate. You asked Matt has done that for us. When it's time for art and supplies to be refreshed. We get an email rolls up in your inbox says hi Arden. This is your friendly reorder email from us med. You open up the email. It's a big button it says click here to reorder and you're done. Finally, somebody taking away a responsibility instead of adding one. US med has done that for us. An email arrives we click on a link and the next thing you know your products are at the front door. That simple. Us med.com/juice box or call 888-721-1514 I never have to wonder if Arden has enough supplies. I click on one link. I open up a box. I put the stuff in the drawer. And we're done. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three and the Dexcom G seven. They accept Medicare nationwide, over 800 private insurers and all you have to do to get started is called 888-721-1514 or go to my link us med.com/juice box using that number or my link helps to support the production of the Juicebox Podcast what what insulin did you use in it when you got it originally was using diluted? Yeah, so

Adam 24:07
it's kind of a long story but we had done a bunch of research like ourselves and we're like, even with the like the pump gives you like you can do point 05 units. Even with that with the full strength insulin it would be too much. So we we put diluted insulin and pump right away even though they prescribed us like they gave us you 100 Like Humalog and I was like we're just going to try it this way. It was working like really really well like so much better than the MDI. We were able to dose for like one or two carbs even with the the diluted insulin or the pump. Is that so that what do you tend to the pump you can actually give like point 005 units of like full strength insulin. Is

Scott Benner 24:50
that okay? Like is that an FDA?

Adam 24:54
G is not FDA approved. I'm not a doctor or anything. If you want to get Have your spiel but like the FDA hasn't approved, like, I think for the Omnipod, it says right on the side of the Omnipod, like, use u 100. Insulin, but people use diluted in it, and people use like u 200. in it. And we haven't had any issues. I was like, we're just gonna try it. And if it doesn't work, like, we can switch to you and 100. And we did try u 100. Pod later, just because like we had to go through the whole pump training and class and stuff. And I was like, Oh, they're gonna see we're using, like, way more insulin than she shouldn't because it was diluted. And they wanted us to connect like her pump to gluco and all that stuff. I guess Long story short, we, we had a lot of success with the u 10. We're trying to be really honest with our endo team. So we like told them, hey, this is what we're doing. It's working really well, we tried you 100 It it, it does, it doesn't work very well, because we couldn't, we couldn't give small doses and like her Basal rate was like the minimum point 05 per hour. Yeah, so getting like one trip per hour, you don't have a lot of room to manipulate, like the Basal rate, like it's either on or off. And once it goes in, you can't, you can't take it away for an hour, you don't have any kind of control and you're on such a small dose for like for insulin sensitivity. Right. So and with with the Utena, the pump, then it's like point five an hour. So you have, you know, a lot more drips per hour that you can kind of take away or add to. And we started looping right away, too. So we had, we had Android APS, like an algorithm running from the beginning. Having like that, that room for the algorithm to work with is super helpful. They can't really do much with it, you and 100 insulin at the pump when she's using so little insulin.

Scott Benner 26:37
So obviously, so much of this when it's a baby. And if you really are endeavoring to keep reasonable blood sugars, so much of this is on you to figure out how do you figure all this out?

Adam 26:49
Research. Like, we joined like a couple of different groups, like I think I found your podcast on Reddit, like the day after she was diagnosed. So the podcast is really helpful for like the core concepts. And then I was reading about because I'm like a software engineer. So I was reading about, like DIY looping right away, I found Android EPS. I had an old Android phones like laying around that I could try it with. So even before we got the pump, I like got the loop set up was watching like what decisions that wanted to make. So I was learning from from that as well. And there's like objectives, you run through an Android APS to like, help you understand. Make sure you understand like how the loop is working. Yeah, it's mostly on on yourself. And then when we told them, we were using diluted to the pump, like, I sent it, like on my chart message. And the next day, I got a call from her doctor. And she was like, she basically called to yell at us and was like, you can't put that an insulin pump. Like that's not safe. I had like all this data to prove like how much it was working. And I was talking to her and she she said some ridiculous things like she was like, because I was like when she sleeps like we we can't like her blood sugar is just gonna be at 300 all night because we can't doser for like small enough corrections. And she was she said something like, it's fine if she runs at 300 for like eight to 10 hours as long as it's not like longer than that. And I was like, that's not how like a pancreas works. Like, that's not how her blood sugar's supposed to be. And she said something like, there's no like studies showing they'll have long term complications for for writing that high for a short period of time and she's like, she's probably just honeymooning now and she stops honeymooning, like, the insulin will be fine. And you'll be able to use more. Yeah, she actually actually took away her pump prescription. Because she's like, I can't prescribe you the diluted insulin pump if you're going to do it that way. What

Scott Benner 28:43
was the if there was one? What's the rationale from the doctor for just allowing the poor blood sugars?

Adam 28:51
Alright, I think it's just a cover themselves. Really? Yeah, I think I don't like since it's not FDA approved. I think they just want to cover like they're they're selling themselves for like liability. But she also was against us using Android APS because that was an FDA approved. Even though like

Scott Benner 29:11
hold on am I don't misunderstand that she doesn't want to write like it made her nervous to write you for something that you were using off label or something like that, like, okay, but then why is why is there not like, well, let's see what else we can accomplish do to accomplish the goal? How come? It's just like, No, there's a rule so you don't get that? So just let the kids blood sugar be 300 Like, you don't I mean, like there was no conversation of I don't

Adam 29:33
understand it. Yeah. And it was like, she was like calling to yell at me. Like it wasn't like she wasn't being like cordial and nice about it. She was like trying to scare me and saying like, you could kill your daughter kind of talk like it was. It was just crazy. So like, I mean, obviously we found a new Endo. Like very quickly after that, but it was a big struggle. Like, she was like, I don't think there's any reputable like endocrinologist that would prescribe diluted insulin at a pump. And I was like, I mean, there are like, we've done the research, we found them. So I had gotten like a list together of like, you know, like the lead endocrinologist at Seattle Children's and La there was like a bunch of, I think I sent her a list of like eight to 10 doctors, and was like, you know, I talked to all these parents because there's a, there's a Facebook group for like young kids with diabetes. Yeah. So I had talked to other parents who've prescribed like diluted insulin in the pump, and like, asked for their information. So I was like, she's not gonna let us have our pump. If I don't like prove that it's, it's okay. Eventually, she's like, I'm not going to be your doctor. And she she tried to pass this off to someone else at Seattle Children's. And like, after getting bounced around for a while, we eventually found the one we have now. And she's like, she's the complete opposite. Opposite. She's like, amazing sheet. Jesus supports us doing entero APS, she lets us do diluted in a punk. Anytime we need something she's like, she's like, I don't understand the loop that much. But she tries and she like gives suggestions. She's just like, it was like a complete 180 compared to the first doctor that she had. Yeah,

Scott Benner 31:03
I and you were showing her real results, right? Like real? Like, not just Yeah, I

Adam 31:08
had all the graphs. And I was like, here's the days like on MDI, here's the I think we did one day on you and 100 or like one and a half days, and I was like, this is just not working. So we had like, the data and I said, like, we did our research, we found a bunch of people using it. There was like one or two research studies like, you know, small participants sizes, because there's just not that many. There's not many kids that yell that have tried using diluted in the pump. So there's a small sample size, but we like we tried it and it was working. That's that's what we cared about.

Scott Benner 31:40
Huh? Yeah. I mean, I don't know. Like, that's fascinating to me. Really, like, look, we're having success, like, look what we're doing. We're keeping her blood sugar's here. And she goes, No, no, you can't have any of the things you're doing that with because and then not only that, if you persist, I can't be your doctor anymore.

Adam 32:00
Yeah. And she she actually took away for poker. She's the computer scription. She's like, either have to take away your diluted insulin prescription to the pump.

Scott Benner 32:08
How old was she young?

Adam 32:12
She was not old. She was a an advanced nurse registered nurse practitioners. But she was not. She was not like an old doctor. She wasn't. I would say she's probably like in her early 40s. Maybe

Scott Benner 32:25
this is me talking out. I'm not you. If that person is listening, shame on you. It's terrible.

Adam 32:29
Yeah, it was bad. And it was like, the way that she treated us was even worse. Like, she was not nice at all on the phone. And even like we had back and forth after that. And we had to really fight to like find a doctor. She's like, No one at Seattle Children's is gonna let you do diluted inside of the pump. There's nobody here that does that. Even though it was

Scott Benner 32:50
it was working right?

Adam 32:51
Yeah, it was working. So she like after asking around I guess she like we convinced her ask around like all of our colleagues and stuff. And she eventually found someone who's our doctor now who had done they looted in her residency. I lived in some of the pomp. Yeah, I think like San Diego, USC or something. So she's a doctor now. And she had experience with it. So she was like, yeah, like, that's totally fine. Yeah. But in the beginning, she was just like playing hardball and saying, like, No, you can't do this. Like it's not going to work. It's not safe. All those kind of scary thoughts.

Scott Benner 33:22
She found a doctor who does not know I suppose. Yeah. Yeah, that's

Adam 33:28
exactly it. Let me

Scott Benner 33:29
just tell you what I was gonna say, Adam, we can bleep it out. I was gonna say she found a doctor's for you to go to? Is that what you said? What you were thinking? I was gonna say,

Adam 33:36
yeah, exactly. Yeah.

Scott Benner 33:39
People are terrible. Just try a little bit, you know what I mean? And

Adam 33:43
it was like, you know, it's like, a month after a diagnosis. Like, we were already high stress, like, trying to figure everything out doing everything ourselves to like to hear from her doctor, like, you're gonna kill your daughter. This isn't safe. It's like, it's hard to hear. And it's like, an opposite of the truth decision that like my wife, and I have to make, like, how can we best care for our daughter? Like, yeah, he's the number one priority here. Like, you

Scott Benner 34:06
know what it feels like? It's like, Here, here's not enough information to take care of a nine month old with diabetes and you go home, you're like, Don't worry, we'll figure it out. Then you figure it out and go back to her and go, Hey, we figured out and she's not like that. So you won't tell me how to do it. But you know, for sure this isn't right. Even though it's working. It's despicable. Really.

Adam 34:26
Like, even when I sent the message, like telling her what we're doing, I was like, I was like a little hesitant. I was like, you know, there's there's a 5050 chance they take this and they they say we have to stop. And I was like, but I also want to like teach that. Like, this is how it's working. Like you can do this with other kids and like yeah, you know, I wanted to be helpful so I was honest about it, and then it kind of backfired. But in the end, it worked out it was just, I guess all I can say is like if you have a young kid with diabetes, you really have to like advocate and fight for them and like try try whatever is working because it's not okay if you're, if your kids blood sugar is running like 250 300 rides a day are the opposite. Like, we would treat her and she would go low. And it's like, it's hard to get a young kid to, to have sugar at that age, like, they don't drink juice, you can't give them like a gummy bear or something like, I think we were using like frosting. And like rubbing it on our gums at some point. It's like, it's hard to do when you have a baby and you're like, here's some frosting and shoving it in their mouth. Like, it's also

Scott Benner 35:24
upsetting for her and for you. And nobody cares about your, your mental health, like, you know that you're that you're by yourself in a dark room at three o'clock in the morning rubbing frosting on your kids gums. Like, you know, like, I don't know, like, be open minded, like if you're a physician, and you're listening to this, like, if someone comes to you, and they're like this is working. You don't go no, it's not. And then yeah, because this is how I do it. And by the way, the way I told you to do it was to leave your baby's blood sugar over 300 for 10 hours, like Unreal, it was, and

Adam 35:58
we had told her like, we were like, we're waking up like three times a night at least with alarms like, then waking her up giving an injection of correction. Like it was every night, we either my wife or I would wake up and she would wake up and then not go back to sleep for like a half an hour. Like it's hard on the parents can like very bad interrupted sleep and also the baby like, right, it was just not a good time until and then we got the pump. And it was like, wow, this is way better. Like we could sleep through the night. The algorithm like can dose much smaller with the diluted insulin like it was it was like a night and day difference. And even with, like talking to like how much nicer it was for us and her. They're like, No, that doesn't, you can't do that. And I was like, Yeah,

Scott Benner 36:39
I can't keep talking about this. I'm just gonna keep getting upset. So we're gonna have to move on, because I'll go okay. I have a whole other river of thoughts that are flowing through my head right now that I just will take us in a weird way. So do better is my message. Let's see. I want to hear more about setting up Android APS for a baby. Like how old was she when you started it?

Adam 37:05
10 months, because we got we hit the pump a month and a half after for the first pod. We were using Android APs. And it was Wow. Like it took a little convincing for me to my wife to be like, This is what we should try. But once we started it, like, you know, there's no going back once you have a loop. Yeah, no, the algorithms are terrific. But you have to it's kind of like sounds like the iOS app. Like you have to download the code and build the app and get it set up the Android. APS has like these things they call the objectives, which is like a set of questions that you have to answer, like multiple choice questions that that kind of shows that you prove you understand how the algorithm works. Like you understand what the correction factor is what the carb ratio is all that stuff. Yeah. It Temp Basal rate increase and all that. Yeah,

Scott Benner 37:51
it's like the Android APS version of me saying nothing here on the Juicebox Podcast should be considered it's it's them going? Yeah, I gotcha. That's a good

Adam 38:00
idea. That's like, there's a great community to like, there's discord servers with people, there's a Facebook group, there's, so there's a lot of resources, if you need help, and like, need help setting it up. There's not I haven't found a lot of parents with kids as young as ours. So I was kind of treading water a little bit in the beginning. But I found other kids that were two or three and using Android APs. But I didn't find anyone using diluted insulin but like conceptually, it made so much sense. Like, especially when you understand how the algorithm algorithm works. Like if you can manipulate the Basal rate, like you need more than one drip per hour, so you can turn it off and turn it on, like multiple times within that one hour. Yeah,

Scott Benner 38:39
Nah, man. That's It's very cool. You figured and good for you for fighting through the blockade and sticking up for your daughter and everything. And how is she doing now?

Adam 38:48
He's she's doing really good. So I think her last day when she was 5.7. So that was that the one year checkup? Yeah. So she went from like a to diagnosis. She went up a little bit, and then I think it was six at nine months. And now it's 5.7 After a year. That's cool. One of the things that really helped and she's like not on a restricted diet at all, she's she loves like carb heavy stuff. Like, she'll have like 40 cards of oatmeal for breakfast, or like, have yogurt. She has like cereal and stuff, too. So it's not it's not because we're like low carb that we hit these numbers. It's mostly due to the loop. The help of like, we're definitely like the super like nob Turner's to like we we've spent a lot of time like optimizing her settings and stuff. Right. But the other thing that's been super helpful as we actually started using loom Jeff, in March, yeah, this year, maybe two months before her like one year checkup. And that that insulin is like, when we first tried it, it was like magic. Like, like we try we read about you know, some people have the burning or stinging the fiasco for them, Jeff. So we started we just use it as like MDI for like a meal dose. and still had like the diluted human login or pump. We did that for like a week just to make sure there wasn't like, she wasn't complaining about pain or there wasn't any reactions on like the injection sites. And then I was like, We got to put this in the pump like it works, it works so good. Like it hits the insulin hits way harder, faster. And it also has a shorter tail. So like you're not fighting with like having insulin on board and that she gets up and runs around or jumps on the trampoline or whatever. Right. So it's like in and out much faster. Yeah, but I guess that's that's a whole nother story of how we were using loom Jeff and the pump so that it's a un 100 loon jet, they don't prescribe like dilated loon jab and are diluted is human log Saluda is basically just human log with the, like, vasodilator additive. Yep, yep. So I've read people mixing like 5050 lube, seven human log before, just to kind of lessen that stinging sensation in the pod. So after reading that, and do some research, I decided to mix the UN 100 loom Jeff with the u 10. Analog. So I kind of make our own, like use 30 mix with with those two insulins and I mix it right in the pot. So I I take like a certain amount of the diluted insulin, put it in the pot. And then I use like a manual syringe, not the Omnipod syringe and I put some you and 100 Illume Jeff in there, and then I kind of swirl around and activate the pot. We have like a youth 30 diluted mix now with loom Jeff and he will lock in that once we started that it's like so much better control. Like

Scott Benner 41:38
you're like a chemist now.

Adam 41:40
Yeah, it feels like every time we fill a pot, I'm like, Okay, this is you feel like a scientist like you're, you're drawing from two vials and putting it together and swirling it around. And this is like another thing that if we told that to our first her first doctor, she would probably just like,

Scott Benner 41:55
yeah, she'd fall right over like that. But but

Adam 41:58
our new doctor was like, oh, while you're doing that, and it's working. Okay, cool. Like, keep going like, so. Yeah, it was definitely an experiment. And, you know, we're always like, we'll try it. If it doesn't work like, well, we'll know right away, and we can switch. But that's been working super, super well. And I can't like I can't recommend it enough to like people with young kids like, under three or four when you're using like, less than 10 units a day of insulin, like diluted is so much more helpful. Even if you're not using an algorithm. Like if you're using the minimum Basal rate and the pod are point 05. Like, you can't get that even coverage with that, like one drip per hour like the insulin. Isn't that smooth. So like, you'll get a peak like 15 or 30 minutes into the hour that will drop off, but it will hang on, you can't. Yeah. Explain enough fun.

Scott Benner 42:50
It's too small of amount to have a smooth effect over hours and hours. Yeah,

Adam 42:55
and even her her base rate was was lower than point 05. So we'd have like one hour off one hour on if we weren't using diluted. So like you have, you'll have like these natural waves and you can't you can't get good control with that. Yeah, just like every time I try to help people online or whatever, I always, I always recommend trying to leave it in the pump. I think it's a hard thing for most parents to do. Without like, Doctor approval. I don't think everyone is like, you know, as confident as we were. But it's like, if you try it, like, it doesn't really hurt to try it. And like I'm not a doctor or anything. But that was our experience. And it's like, it's night and day difference. It's so much better.

Scott Benner 43:38
I think it's impressive that you figured all this out. I didn't figure any of this out when Artemis this little, you know, Arden was two and I

Adam 43:44
remember your story of like trying to eyeball drops of insulin and figure out how much it was but

Scott Benner 43:50
that's, that's as close as chemists as I came to back then was like I started deciding, like I used to inject drops out into the air with pressure so that like with my eyes closed, like just thinking like this much pressure makes it drop come out so that I could like put the needle under our skin and then just try to make a drop of insulin come out. And you know, I can

Adam 44:14
see why cuz she was what like to when she was diagnosed, right? Yeah, Arden

Scott Benner 44:17
was too but she was 18 pounds when she was diagnosed. So okay, yeah.

Adam 44:22
Oh, yes. Yeah. So my daughter just turned to yesterday. She's like, I think around 28 pounds, almost 30 pounds, maybe? Yeah. And she's still still needs the diluted. It's like, Yeah, we could probably use you 100 Doubt, but we wouldn't have the same kind of control.

Scott Benner 44:40
Did does that. Do you think she's having a honeymoon? No,

Adam 44:43
I don't know. I don't think so. There was like, there was like a one day period like maybe two months in where she like didn't need very much insulin that day. Like she just had her basil going and her Basal was turned off for like four or five hours and I was like, Is this a honeymoon? But she was also not eating See that much, you know, at that age, so right? Maybe I think it might have just been that but like, she's almost one and a half years in now. And there was no sign of like, they kept describing it like the, the endo team was like, oh, there's just gonna be like a big step up or like one day she needs like twice as much insulin. And that never happened like it's been a slow ramp up, but mostly because she started eating more like, she went from like 10 to 15 carbs a day back then, maybe 20 with the breast milk to now she goes anywhere from like, 80 to like 150 carbs a day. Wow. Like she she eats a lot. And she, she goes she she goes in phases. So there's days where she just has like, you know, 75 or 80 carbs, or she's like, right now she's sick. And she's not eating that much. But she's still eating like 80 carbs a day at 90 or 100

Scott Benner 45:48
mad so that's a fair amount. But we look at

Adam 45:51
like the stats all the time. And we can see you can see when she goes through like a gross burger or something. And there's like one week where she eats like, a lot more than the last week or she needs much more insulin. It's crazy how much like the total daily insulin fluctuates, like, she'll go from like 20 units a day to four units a day equivalent. So that's our diluted insulin. But if you convert it back to you and 100 She's, uh, she's using about 10 units a day right now maybe a little bit less of standard insulin,

Scott Benner 46:18
the fluctuation, it's just based on how she eats that day.

Adam 46:22
That's the primary driver, because like, her carb ratio is like, took one to 20 I think if you convert it back when 216 Maybe. So like, most of our insulin is is for meals and you know, kids like they eat like every three hours during the day like, yeah, wakes up have breakfast, like three hours later, there's lunch, three hours later, there's a snack. Three hours later, there's dinner, and then it's bedtime. Like that's the other hard thing about a kid. There's no like, there's no breaks between meals. There's always like some carbs on board. And you always have insulin on board. Like, they just they just eat a lot.

Scott Benner 46:59
And they're not. They're not an adult. They don't sometimes roll into the afternoon to go. I might just have a soup for dinner tonight.

Adam 47:04
Yeah, you can't do intermittent fasting or anything like that. Yeah.

Scott Benner 47:10
Wow, that's interesting. How do you think you and your wife are kind of equally involved in the management? Or does it fall one side or the other?

Adam 47:18
I think we're, we're pretty equal. I definitely do the technical side like building Android APS setting up glue. But she she definitely understands everything like she, she does just as much research and stuff. And she, like, I went to Wisconsin last week, and she had right at home. And she did all the management when I was gone. Like we could each just have her and do it on our own. And it kinda like the same way back and forth. And what other results the same, no matter which one of you were like the primary. They're pretty close. We actually, we kind of work as like a checks and balances on each other. Like, there's some days where I'm like, I think she needs words, one right now. She's like, Ah, maybe not. So like, we kind of split the difference a lot. And it usually ends up working pretty well. Cool. That's excellent. There's, there's so many variables with someone, like even anybody who's diabetic, but especially someone who's her age, because she should like go and jump around or run really fast and, and all of a sudden, like, need way less insulin, or she'll decide to sit down and not be that active one day. Or if she's sick, like she's been on 125% profile for like the last week because she's sick and just like more insulin resistant. And she's also not eating as much. So like, there's so many, so many different things you have to think of and accounted for. But I would say it doesn't really matter who's driving the insulin, or her like, my wife or I were both about the same. Okay, in terms of management, I might lean towards the more aggressive side, and she might be more conservative sometimes. But I think there's other times where where I'm like, I don't think she needs that much or something. So we've kind of flipped back and forth.

Scott Benner 48:56
That's perfect. Is it how is it? What's the strain like on your marriage or your rest that kind of stuff. In

Adam 49:05
the beginning, it was definitely hard, like, the first few months. And like a lot of the stress is just from like, the lack of sleep honestly, like waking up all the time. You know, seeing your kids blood sugar so high and knowing it's not good, but not really being able to fix it. And then like all the other stress of like dealing with her endo team, and like us doing, you know, really custom stuff like theirs. I think I was definitely for you know, let's do all this stuff and try it and see if it works. And she was more of like, maybe we should listen to the doctor or maybe we should talk to them before making changes of insulin in the beginning. And so like there was a little bit of battle there but there's it's definitely stressful. Like it's it's hard. It just takes a lot out of you. I think it's worth a much better spot now. Good. And also we decided to have a third kid and I think that was that was definitely delayed because of where misdiagnosis. Like, you know, you're always thinking about, you know, what if you have another kid and they have diabetes and how much works that that's going to be trying to juggle juggle that when you're like still trying to figure out the first. The first kids like, how do you manage this disease and stuff? But yeah, it was

Scott Benner 50:20
better I feel that's it. And that's a big decision to make another baby after you've now lived through what this is, you know, because if it happens again, it's a lot. And you know what now, you know,

Adam 50:32
we got to like a point where we were confident and like, okay, we can handle this. And, you know, we didn't want to let diabetes like change our plan. Like we have always planned to have three kids and stuff. So I'm like, What side? It's like, you don't want to have something change your plans. But on the other side, it's like, you have to be realistic about, you know what the future might be?

Scott Benner 50:49
Yeah. No, I agree. So it's your wife pregnant? Are you trying or what's going on? Yeah, in

Adam 50:55
in August, actually, we are expecting baby number three. Oh,

Scott Benner 50:59
just a couple months. Couple months? Yeah. Good for you. Congratulations.

Adam 51:03
That was another thing I wanted to mention is the celiac disease. So after like, finding out I was celiac and cutting out gluten. I had done some research because for our second kid, we had like, a really hard time getting pregnant. It. It took, like nine months or so. And, you know, she tried all the things like usually, you kind of just assume it's, you don't necessarily assume it's like unfair, but a lot of times that falls on the wife, like with a female to figure out, you know, what, what's wrong, like, infertility wise. But when I cut out gluten, like this baby was like, just right away one try, like so like I learned about the the infertility, infertility with celiac, in men and women. So if like other people are struggling trying to get pregnant, and you have like, your celiac, or maybe you don't even know your celiac, maybe you could test for that. Like, that's just one other thing to try, right? Because it's really hard when you're trying to have a baby and you can't like it's, it's really stressful, like, emotionally and but yeah, that was like, I never thought of that until after kind of retrospectively. Well,

Scott Benner 52:12
let me say, first of all, that's wonderful and terrible. I'm sorry that she got pregnant so quickly, and took away all the fun parts. And happy for you that it was easy to get pregnant. Yeah, and good advice, by the way, that share with people, although you've been married for a while, I don't know how much of that fun you need it. Well, you've been on quite a little journey in quite a short amount of time. Yeah,

Adam 52:32
it's been a lot. But you know, we learned a lot. How old are you? And we're still learning? Yeah, I'm 33. Okay, you guys waited

Scott Benner 52:39
a little while to have kids, too. Right? You were like, 27? When maybe you were having your song? Yeah.

Adam 52:44
Yeah. 27. Sounds right.

Scott Benner 52:46
That's a Listen, do you think you would have if you were younger? Would you figure this out?

Adam 52:54
Not as fast. I'm sure. Like, I wouldn't have had as much free time as I do not to do the research and figure it out. I guess maybe you'll make time at that age. But yeah, I don't know. It's hard to say. I've always been super technical and into computers and like comfortable doing research and stuff. So I probably would have figured it out. It just might have taken longer.

Scott Benner 53:16
Yeah. It's interesting. I'm a computer user, not a computer understand her.

Adam 53:22
Yeah, no, I was like a programmer. So I wrote, write code and stuff. So I'm really familiar with all that.

Scott Benner 53:30
That's cool, man. Yeah, that comfort levels is super helpful when you're digging into loop and stuff like that, like just whether you understand it or not, when on day one, when you start learning about at least the terminology and the things you're seeing in front of you seem like familiar, you know, I can, I can see why it would be easier for you and off putting for other people.

Adam 53:53
Yeah, like, because of experience, I was able to set up like a lot of things that that work better for us like we can, like she has her own phone that we kind of keep nearby. But we set up like a remote desktop app. So you can we can control her phone remotely wherever she is. So like when she's sleeping in a room at night, we don't have to go in there and grab her phone to dos or we just use our phones and remotely connect to her phone. And then we can interact with it, like as if we were touching it. So that's like super helpful. And I've helped a few, like other parents set that up. So like, it also works with like honey, pot five or something like if you have an Android phone as your controller, you can talk to that phone and control it. Even if you're not using glue. Like you can communicate like an iOS or an Android phone remotely like that and take full control. So that's like, kind of like a hack on how to get remote bolusing working. Yeah, before it's like officially supported by like tandem or Omni pot. So we've been using that. And there's other things like I had to write some code to set up like a like a fitness watch so I can get her blood sugar's on there. And there's like a great, great community for all this stuff. So you don't really Have to do that much work just kind of tweak little things to make them work.

Scott Benner 55:04
The Remote Desktop is brilliant. I never, I've never even considered that, because that's something yet. Anybody can do with their computers and their phones is run one device from another device as long as that remote desktop app and the client is one to the other, right? Yeah,

Adam 55:20
and iOS has has something similar, but I don't I don't know if you can do fully unattended access. So there's, there's some hacks you have to do to make it so like the other person on the other side doesn't have to click like, okay, you can touch my screen, right? So there's a way on Android to do it, where it's like fully unattended access. So you don't have to the other person like her phone doesn't have to acknowledge that we're connecting, we can just connect and do whatever we want and disconnect. Yeah, that's

Scott Benner 55:44
terrific. That's so smart. Good for you. That your idea? Did you see somebody online doing it?

Adam 55:51
I don't know for sure. I have. I think it was my idea. Because I had done that before. Like I had used a lot of different remote desktop clients to control devices before. So I had some experience with it. I don't remember reading about it, but I definitely helped other people set it up.

Scott Benner 56:08
That's something that's I've asked one of the more brilliant things I've heard in a while, honestly. Yeah,

Adam 56:12
I mean, Android APS has like, they call them SMS commands. So you can kind of do the same thing. But it's like, you have to text like Bolus 1.5. And then it will like text you back. And you have to like, put in a password or a confirmation code. But it was like really clunky and you can't like, you can't see all the insulin on board, you can see like the treatments and stuff, but it was just like, and then we needed to have a text plan on our phone right now. We don't need a text plan. We just did connect her phone to Wi Fi wherever she is. And then we have full access. And we can, we can actually see what we would see if we were holding our phone, which is way nicer than trying to like

Scott Benner 56:48
those. Oh, yeah. Sounds amazing. That sounds amazing. It really does. Like, I mean, it's so valuable just not to get out of bed. You know, because that's all you're gonna do is get out of bed, walk into the room, pick up the phone, do the thing. And if you can just see them. I don't know that you're gonna have a bunch of people asked me about that? Because that's a great idea. Yeah,

Adam 57:09
there's like, it's not too hard to set up. There's like some hacky have to do to make it fully unattended. So you don't have to like, click OK, on the other side, but that's about it. Like, it's not too hard to figure out if you search on online. Yeah.

Scott Benner 57:20
Is it stable? Is it a thing that stops working periodically? Or is it been fairly stable for you?

Adam 57:27
It's been really stable, but I'm always Wi Fi to Wi Fi. So or like my phone might be on mobile data, but hers is always on Wi Fi. I think if if you have like, you know, a kid at school, and they're playing recess, and you she's there on like a mobile network, it might be a little slower, like swiping, because you're kind of just like remotely viewing the screen and doing touch interactions on it. So sometimes, if you connect, it'll be like a little slow, like you're swiping the screen will be like a half second behind. But it's pretty, it's pretty one to one most times, but I could see it maybe being a little slower. If it was a bad network connection. Yeah, like that's maybe one advantage you would get with just SMS because you don't really need a data, a strong data connection.

Scott Benner 58:06
And I found my question, do you have to be on the same network to use it?

Adam 58:11
No, no, not at all. So like I when I was in, I was in Wisconsin last week, so I could control her phone remotely, to give insulin or do anything really. But you don't have to be on the same network at all.

Scott Benner 58:22
That's awesome. No. All right. That's the best thing I've heard in a while. Thank you.

Adam 58:27
Is there all the remote desktop clients like you don't need to pay for like their? The free versions are sufficient enough for what what we use it for? Yeah.

Scott Benner 58:36
Oh, yeah. You're not paying like a fee every month or something for it? Oh, yeah. Not at all. How long do you think? Wow. I mean, she's so young. You've got years of this coming up? Honestly, do you think this whole like remote thing will help you when she goes off to school?

Adam 58:55
Yeah, I think I think that's where it really becomes useful. Now. It's supposed to be like, she's napping, or she's sleeping at night. It saves us time. Because like, we're always with like, either my wife or our like one of us. We're always with her. So it's never like, you know, we don't have like someone here that we can trust her with yet like, we haven't left her with like a babysitter or we don't have like, I have two brothers here with us. But they're not. They're not like the kind that would babysit like kids overnight or anything. They're

Scott Benner 59:26
not the kind of brothers that live babies and kids overnight.

Adam 59:29
What kind of what kind of watch the dogs you know, they watch for maybe an hour or

Scott Benner 59:37
two, but then they lose their interest.

Adam 59:41
Yeah, I mean, you know, maybe we're a little bit more protective with our kids that some parents but you know, it's hard to leave them with, especially like a diabetic child with any caregiver. Yeah. And it's like a two year old to like, or she just turned two but yeah, I think what she does go to school, having that Control be super, super helpful, for sure.

Scott Benner 1:00:03
Well, good for you. So we're not maligning your brothers. Is that right?

Adam 1:00:08
No, they don't. They're just, you know, like single bachelors.

Scott Benner 1:00:11
That's what I was getting at. They don't have their own kids.

Adam 1:00:12
Yeah, right. No, one of them has a dog. You know, even that's like, a lot of work. You're

Scott Benner 1:00:18
afraid for the dog?

Adam 1:00:21
Yeah, for sure.

Scott Benner 1:00:23
It's the way that dogs eaten every day.

Adam 1:00:26
Yeah, probably not.

Scott Benner 1:00:27
I get that. I mean, I understand being protective as well. And I mean, it's a lot, she's still very little, there's, you know, a lot like you said, she'd get up and run around a little bit and change her whole situation.

Adam 1:00:41
And then even like, with all the experience we have, there's still days where like, she goes into a double down at like 100 or 80. And it's like, okay, that that didn't hit, or she'll start eating. And then just as he likes to run around and play instead, like, you're not dealing with an adult, like, it's, there's so many different factors you have to think about. And it's hard to, it's hard to explain all these steps to somebody on like, how to care for your child. Right. And we're like, study that, we have to figure that out for like, in August when the next baby's coming. So like, we're gonna have to leave her with some family. So like, trying to think about, like, how do you write like a, like a guide on how to care for your daughter, there's like, way too much information in there. Like, and like not even talking about, like sensor changes, and pod changes every three days, there's just like, so many factors that you have to do it and teach them how to use like, just the controller to enter insulin like, so not having somebody kind of, like, on and off like family nearby to help is kind of hard.

Scott Benner 1:01:42
I would imagine also, that you don't exactly know what to do. Every time.

Adam 1:01:49
Yeah, for sure. Yeah, every meal is like, you know, we don't we don't like weigh out her food and measure it. Like, you kind of just learned, like, you know, this pile of food is like, maybe, you know, 15 or 20 carbs, but you don't know how much she's going to eat. And it's different every time. And that's like another thing with having a kid so little, I think in the beginning, they told us to dose her after she eats. But she would sit down and like, you know, they play with their food. They take like an almost an hour to eat. Yeah. And if you wait until after that, like her blood sugar is already 300 By the time you get insulin. And it messes like all your carb ratios up and stuff. Because you're not you're not timing it right. So even even at a Yeah, like before we went to the pump, we were doing like a pre injection of Pre-Bolus. Before but it was just so hard because we could give like the smallest dose he could with a syringe, right? And sometimes she wouldn't eat enough food. And then you had a lot of times have to dose after she gets out because you don't. We never wanted to like inject her while she's in her highchair. Like it just feels kind of wrong to like, interrupt her eating that way. So that's like another reason why the pump is so helpful. And then how do you get really good with the injections?

Scott Benner 1:02:55
And when all of these variables are possible? How do you explain that to somebody? For babysitting? Exactly, right?

Adam 1:03:02
Yeah,

Scott Benner 1:03:03
yeah, I don't think you're being overprotective. I think you're being pretty realistic about the situation.

Adam 1:03:08
Yeah, we're still definitely worried about what's gonna happen. But surely, I think we'll do as best as we can to prepare whoever's here and, and try to figure it out.

Scott Benner 1:03:17
Have you ever had to do anything emergency for low blood sugar? Have you always been able to bring it up somehow?

Adam 1:03:21
No, yeah, we've always been able to bring it up, I think, with the Dexcom. And like our alerts, and I use something called the extra app on Android. So we both my wife and I have alerts on our phones. We have like watches set up so we can see our blood sugar on there. But yeah, we have our alarm set, I think at like 90 or 80 During the day, maybe 90 At night, so we can wake up and treat it a little bit in case of like, for some reason starts diving. And that's like 140 during the day. But yeah, with the with the alarms, it almost never happens. There's been like a couple of times where she dips into like, like 50s And it's like, okay, like she already ate but it's not hitting yet. And sometimes you have like compression lows at night where the sensor like all of a sudden drops straight down. So you wake up and you're like, okay, is this real? Like roller over? Yeah. But yeah, we've never had to use anything other than she really likes fruit snacks right now. So that's her. Her like choice of treat right now for when she's going low, but it doesn't happen too often. Maybe like once, once a week or every other week. And some you know, you'll have bad weeks where you need for snacks a couple of nights in that week or whatever. But yeah, we always know she'll have a fruit snacks. She'll never like say no to that. What's the go to right now? And of course her brother always wants a fruit snack when she gets a fruit snack. So that's always fun.

Scott Benner 1:04:41
What's her level of understanding about her life? Do you think?

Adam 1:04:45
I would say she's, she understands it pretty well. She actually does her own finger pokes or blood sugar checks or whatever you want to call it like she's, she's in a phase right now. She wants to do everything herself and her one year checkup Like either you have to give like a finger prick to do your agency check. So the nurse whoever was in there was like, really surprised that Bryn like, we gave her like the meter case, she ends up that she took out the meter. She needs help like opening the strips container, but she'll take the strip and put it in and give herself like a finger poke on her finger. And then there's like, they were like, That's so crazy. Like, he's like one and a half years old or whatever, when you are nine months old. But yeah, it kind of is frustrating sometimes because like, if if you need to check her fast, like she's dropping or something or the sensors wonky on the first day, she like insists on doing it all all by herself. And sometimes she'll take her time. So it's it can be like, you know, a little frustrated you like come on, let's do it already. Let's go like pick a finger and she does her toes a lot, too. When she was really little we just did like pricks on the toes because the fingers are so tiny. Yeah. But I think she she understands she knows like, which what her her CGM is she calls it Dexcom. And she can like point to it. She knows which one her pot is. She like wants to rip off. Like when it's time to change, she'll rip off the pod. She can't really reach the next conference on the backup leaves like upper but for Dexcom. But we do paws on like her stomach or her arms or her thighs. She's like, she's really good about it. Yeah, she's really good. I don't know, if she she doesn't really understand what it's like not to have diabetes, because she's She's had it forever in her life. Right. But I would say she's, she's, for the most part comfortable with doing all this stuff. She really, she's like, more recently, she's been not liking the injection. Like when the pot clicks in. She's been like, you know, trying to avoid that that part, but she lets us stick it on. And sometimes she'll want to put it on herself. But with the adhesive, like, it always gets messed up if you don't put it on there nice and flat. So that's like frustrating for her. I think that she needs help. That's to help her.

Scott Benner 1:06:53
What about her brother? There's like, what's her brother's like, understanding of what's happening?

Adam 1:06:59
I mean, we try to we try to talk to them and explain to him all the time. Like, I think it's hard for a sibling like that, because like every meal were like, my wife and I are talking like, oh, how many carbs? How much insulin? You know, like, what did she eat? Like, if we weren't watching, one of us has to ask, like, how much did she actually so he hears that like all the time. And I think at first it was it was like clearly really hard for him like, like attention wise, he was having to give up all that attention to her. And you could tell like, you could tell it was hard on him. Like it's definitely hard on the sibling as well. But he he understands like a low blood sugar means she needs a fruit snack, or she needs some kind of sugar. And he knows that like high blood sugar, you need insulin, right? He wouldn't know like, obviously, like how much or whatever. But he's always excited when we check her blood sugar because he usually knows that means she might need a fruit snack. So he's like, he knows how to read the like, he can read numbers already. So he he'll read like the number and he knows like if it's a certain number that she's a fruit snack or whatever. But he also doesn't know like how much insulin is onboard of that stuff. So sometimes you'll see it's like 80. And he's like offered snack. And right now like She's good. She has like no insulin on board or whatever they understand. So we tried to talk about it to him because like we want him to be able to help her. Like when they're both in school and stuff. So I think he understands it pretty well. Like at a high level

Scott Benner 1:08:27
does he feel any responsibility for do you think or no,

Adam 1:08:30
he definitely has his moments where he'll like go and run and get a pack of fruit snacks or something. Like he'll help or he'll run and get like the meter or like you need a Kleenex or a tissue to stop the bleeding. And he he'll help out with stuff like that. I don't know if he fully understands, like, you know how to care for like, yeah, he should help care for her. But you could tell he he has like that in his heart like he wants her to to not be heard. And he can see like, if she's struggling with an injection or something like he'll, they'll go and like rubber back or like hold her hand and it's really sweet how he tries to help out.

Scott Benner 1:09:04
That's, that's amazing. Oh, that's really terrific. Do you have any advice for people who have little kids with diabetes, like anything that really sticks out in your head? That wouldn't be something that the rest of us would even know.

Adam 1:09:15
I think I probably covered it all. I would say like getting the pump as soon as you can definitely like a CGM like that's number one. But a pump is so important because like if you think about how many times the pod is giving insulin in a day, like you don't want to have to do that many injections for a young kid. We've she's always had the only pod so I really can't speak to like two lists versus not. But the tube this pump is amazing. Like even on her tiny body. It doesn't seem like that big and clunky. Like her shirt can go over it and stuff. But yeah, get a pump and get a CGM and I can't recommend diluted insulin enough. I know that's kind of like a it's going to be a little bit harder for some parents to do. And a lot of places will give you diluted insulin like our our hospital will do. Like none of the pharmacies around here will actually dilute it, they, they insist on doing it like in the inpatient pharmacy, in the hospital. So they mix it, it's kind of funny because they mix it in like a chamber where it's like, very safe and not gonna get contaminated. And then we at home, just like go and fix it ourselves, like on the table. But like, after doing research, a lot of a lot of hospitals just give you like the human log and give you the diluent. And they tell you to die at home. So yeah, it's just different. What advice you get, depending on you know, what part of the country you're from, or wherever you're from, right? What a lot of people are comfortable diluting at home. And sometimes like they say, Oh, you can only get it from this hospital. And it kind of sucks if you're like a 45 minute drive away. Sure.

Scott Benner 1:10:45
Do you think how long do you think she'll use the little insulin?

Adam 1:10:48
I would say, like, a few years at least, like, just because of the additional control you get. Like a lot of times, you'll hear endocrinologist won't give you a pump until they're using like, a certain amount, like 10 units a day or 15 units a day, or Omnipod. Five, I don't know what number they suggest. But it's mostly because if you're under a certain amount, like the algorithm is not going to be that efficient. Like it can't take away and add basil very much if you're already on the minimum basil or close to it. So now she's on she's on about 10 units a day, even if she was on like 30 units a day or something. I feel like using some form of diluted is always going to help. I think we'll probably slowly ramp up like right now around a youth 30 like 30% strength. I think we'll probably settle on like, you 50 It seems like that's what the for the kids that do diluted, they usually end up on like you 20 to 50 until like five or six years old either.

Scott Benner 1:11:45
Wow. So when I just feel like we should go over this once because we talked about it so much. You're diluting the insulin, what did they dilute it with? So

Adam 1:11:57
we obviously had homologue and lucetta. So I can speak to that I think theosophy has their own dilute and but basically there's a dilute that like Lily has for the HELOC insulin. It's like some probably saline mixture. I don't actually know what it is, but they call it like Humalog Bailu. And so you can actually for the people that dilute at home, they get a prescription for that diluted and a prescription for the HELOC and they mix it themselves. So they're they're basically just watering down the insulin to a certain ratio. So that's like 10% strength or a lot of people do like 25 you 25 That would be 25% strength. But for us for the to create our mixture, like you have to do some math because I don't have dilution and like we've asked for the prescription but are our endo is like on maternity leave for a while. So we haven't gotten the doula and so we're just kind of using what we have right now. Right? So I use a u 10. mixture, which is basically like, you know that that diluted insulin from the UN 100 Human log and the diluent. And then I mix that with the EU and EU and 100. Luke Jeff to make you 30. So I did some math to figure out like, you 100 is basically like how much insulin per milliliter. So I think 100 is like 100 units of insulin per like 10 milliliters or something like that. So if you know like the, the math behind like, what those ratios represent, you can calculate, if you want like a u 20. Or u 30. You need this much of your diluted insulin and this much of your even 100 insulin and you can you can figure it out if you so I mean, you might need to be a little more like math savvy to do it. But it's not super complicated.

Scott Benner 1:13:34
So when you do like, let's pick one, you want 100? Okay, so does that mean, if I use a unit of real insulin, I'm getting a unit of insulin. But if I use a unit of diluted insulin that's diluted to you 100, then every unit of liquid I push is has that 10th of the power of a unit of on diluted insulin. Exactly.

Adam 1:13:59
When we were on you 10 Like one unit of you. 10 is like point one units of you and 100. So you just you 10 is like the easiest diluted because you can just move the decimal over one, right? Because it's just 10%. Yeah, so like, five units of you 10 Insulin would be like point five, like a half unit of you and 100.

Scott Benner 1:14:19
And the value there is that the pump can do full units pretty well of liquid. But it would have trouble more trouble doing a 10th or a 100th of or you know if you need to less

Adam 1:14:31
than less. Yeah, so the pump can only do like I think at least I know how many pot I think there's some that support like a smaller drop, but the smallest drop Omni pod can do is point 05. So that's point 05 units of like if you're using a full strength insulin, but if you put 10% strength insulin in a pod that point 05 is actually quite five units, or it's actually point 005 units of insulin.

Scott Benner 1:14:57
I've heard people have these conversations so many times. And it confuses them every time. It's hilarious, actually.

Adam 1:15:03
I mean, I do why because yeah, you're dealing with something like, very important, like even insulin is one of those drugs like at the hospital, like anytime they, they're going to administer it, they need like a second person to look at it and sign off, right? Like, it's a very important drug. So like, you don't want to mess up the calculation. And like, when I did it, I was like, I checked my math like a few times, and I'm like, okay, is this right? Like, double triple check?

Scott Benner 1:15:28
Well, yeah, what was that like the first time where you just like, I hope I hope I have this or you just did it until you like, I can't be wrong about this. I've checked it. So she

Adam 1:15:37
was at like a point where with the u 10. She had gotten to the point where she was using, like, 200 units of u 10. And she was like running out of the pod because you can only fit 200 units in the Omni pod. So she was having to change pods more often. Like every instead of three days, they were like, we were running out of insulin after two days. So that's when I was like, Okay, you tennis is too much dilution, we need to change it. And that's around the time where I wanted to try the loom Jove. So I had like, calculated how much insulin do we need in the pod for like not not to run out and to have a sufficient amount never have to worry about running out. So I came to like a u 25. Are you 30. The reason I went to U 30. Is because just based on the lines on the Omnipod syringe, so they have like a min line on there, which I think is 80 units, if I remember, right. So I feel like 80 units of that included insulin using the Omnipod syringe, I put that into the Omni pod. And then I take just like a normal syringe that you'd use for a manual injection and take 25 units of litter, Joe, and put that into the pod. And then I swirl it around. And if you do the math, that's like, so you have 25 You and 100 units of lumed, Jeff, and if you have 80 units of YUTAN, that's really eight units of like full strength insulin. So you have like 33 units of full strength insulin equivalent, and then you divide it know like how much insulin you put in total. So that's at plus 25 units, you have 105 units of insulin. So if you take 33 divided by 105, that gives you like the strength of your insulin. You just fried up to like 31.4 or something. So it's the 31.4 if you want to be like really technical about it.

Scott Benner 1:17:19
Yeah. Okay, you fried my mind, then

Adam 1:17:23
go ask your doctor, or maybe some other people can understand.

Scott Benner 1:17:27
Oh, my God trying to simplify it. No, I know, it's, it's, I don't in the end, I don't think it's that. I think if I was doing it in front of me, it would it would have the feeling of like if I had two beakers in my hand, and one of them had like blue liquid and one of had yellow liquid. And I'd be like, Look, we're gonna put a percentage of this, this that this is the mix, and I go, Oh, that makes sense. Like, visually, I would get it just

Adam 1:17:48
like a mad scientist for a little while. But after a few pods, it's like you do it enough every three days where like, you don't even think about it, like my wife or I can fill a pod and neither of us have to like, look up how much we're doing. It's just you just kind of figure it out. And if you do it enough, it's just, it's just like filling the bog by normal now,

Scott Benner 1:18:06
right? I wonder what will happen when she stops using it? Like, if it'll be difficult for you to talk about the unit's correctly at first, I guess it won't matter, right? If you don't,

Adam 1:18:15
it's a little hard now. But when we have her checkup, so she goes every three months. And every time I have to like sit down and convert to the UN 100 units because our endos like, if you told me it and like you 10 Or you 30 Like I'll just be really confused. So just we convert everything to you and 100 like her current ratio or sensitivity factor and everything to explain it. So we talk about it and four units to her. And I think this this, this diluted stuff, but also be really hard if you have other caregivers to try to explain to them because the part that's tricky is if the pod fails, we usually use loom Jeff now because we have it. But we can't just use the same units right? Like one unit of loom Jeff is like way more than one unit. If we plug it into our controller, that's like three units of the diluted or whatever. Yeah. Wow. As long as you're aware of all the ratios and stuff, it's not too bad. But if Yeah, if you have like someone else taking care of your kid during the day, like a school nurse or something, it would probably be really confusing for them for

Scott Benner 1:19:14
either mine. Yeah, because your kid will sound like they're using just a an odd amount of insulin for their size, right?

Adam 1:19:23
Yeah, so if I look at like her loopback she's using like 20 or 30 units a day. But really, that's only like nine or 10.

Scott Benner 1:19:32
Like you would 100 Eat. Yeah, yeah. Yeah. Yeah, that would that would throw someone off. If you handed them like a two year old. They're like here. She uses 50 units a day. They'd be like, what? Wait, stop what?

Adam 1:19:42
Yeah, for a while, she was like on the utet. She was using like 200 units a day. And that was like another thing we hit was like the volume of liquid going into her was so high like she was up to like, I don't know, 25 or 30 units for like a Pre-Bolus and it would just take you know, it takes like a few minutes or whatever. For that to actually get in. And I think her sites were just getting like over flooded like her body so small you can't you can't shove like too much insulin in that same site. Like it I think it just slowed down the absorption a lot. Yeah, it floods. So that's another thing like when you increase the strength of the insulin like, if you like we went 30% Stronger like, like from utente 30 She's getting like a third of the volume of liquid. Yeah, so that's like another thing to keep in mind is if, like, you'll, you'll know pretty quickly if you're not eating too much, because you'll run out of like, the pot will run out of insulin. But you might want to switch even sooner if if you're like, using like huge boluses. Like now her Pre-Bolus is like, you know, five to maybe nine units, or eight units at the most Hmm,

Scott Benner 1:20:41
do you? Do you see tunneling where the the the liquid goes in and actually comes back out near the near the cannula?

Adam 1:20:52
Yeah, we definitely did more with the when she was getting way more insulin. And for a while when we first switched to lhundrup. That's one of the things that people complain about with Vyasa lube is like they have tunneling or occlusions. And it's always, it's always kind of hard to trust what you read online because you don't know if like, is it really tunneling or an occlusion or did like they hear a miss on a Bolus, and they can't, yeah, they can't figure it out or whatever. So you kinda have to take it for grain of salt. But when we switch to loom Jeff, we did for a while have pods that would seem like you can tell if the site's going bad. And it would go bad after like two days or two and a half days instead of the full three days. But that was also happening with the UN hunter or the uTec. When we were using like way too much insulin for pot, like pretty early on, we got the prescription switch to switch to pot every two days. But now we're at a place where it almost always last like past three day limit, because you get like the what 12 Beta eight or 12 hour grace period. So we're always always getting the full sight. You know, every once awhile, you have a site that just goes back a little earlier, you switch it, but for the most part, it's working really well and she doesn't have like any, like inflammation or swelling on her sites with the loop, Jeff. And part of that might be because it's diluted, like I've read people that start with like a diluted like 5050 mix of lhundrup just so it's not, you know, like the reaction for the vasodilator in the insulin sometimes makes like people's pump sites read or swelling or hurt when like painful and the insulin is going in. Right. So they dilute it for a while. And then over time, the body kind of gets used to that that as a dilator. And then they like slowly like other people I've read slowly go to you and 100 Or like, they don't they like back off that 5050 mix. And that's actually where I read people mixing in the pot directly and where I got the idea to do it. Because most people that use diluted insulin like they buy like sterile vials and they'll do like a huge batch and then they'll just use that one sterile vial and that's always like the insulin that they pass around to like when they go to school and stuff so it's always the same Yeah,

Scott Benner 1:22:46
they you're maybe you're making me think about it again, because I fast definitely worked better for Arden in our like limited testing but it just stung and so she didn't want to use it anymore. But I did a couple of times mix it with an insulin that I knew didn't burn. And she she couldn't tell the difference then so I wonder if I could

Adam 1:23:08
recommend so the ask is the same as Novolog like the chemical makeup yeah like the house was just like Novolog with like the additive for the vasodilator and it's like the same as like loom jam is Pima logs like bass rapid acting insulin or whatever. So from what I read you want to like keep the families together like always dilute loom Jeff with p log or fiasco with Nova log but I've definitely read people that mix like they might just have he'll a log and they got fi OS when they fix them and it seems to like I'm not a doctor or anything but people say that works like I don't like you could probably make some Phaedra with the Aspen it would probably less than the stinging but I you know the thing that becomes unpredictable is like the duration of insulin action the DIA like the there's like a exponential curve on like you know when the insulin hits its peak and when it backs off right so if you're sticking with like the same kinds of insulin it's it's less of a

Scott Benner 1:24:04
I would never have mixed a pager with the ass

Adam 1:24:08
Yeah, I would recommend it No, I would not people mixing the US with Heba log or whom Jeff was noble log, like I see that happen all the time where they do like 5050. Right, less than the burn for a while. Yeah, I gotcha. But yeah, Dr. Blah, blah, and

Scott Benner 1:24:23
it's not a doctor at all. He doesn't even have trustworthy brothers. Don't listen to him. Now I mean, I appreciate you doing this. Is there anything that we missed or should have talked about that we didn't? I

Adam 1:24:37
don't think so. Cool. We talked about like Hashimotos and celiac and all that fun stuff. I wanted to thank you for the podcast and like, like even not not just for my daughter's like Karen diabetes, but even for me like figuring out the celiac and the thyroid. I don't know if I would have gotten that as fast if I didn't hear So many people talk about it and you explain it in like your podcast episodes. And like, even when I got my TSH back, I think my doctor had like a quote, that was something like, you know, your thyroid labs look perfect or look good overall. So like having a TSH of 2.7. And like, I never would have dug into it without without hearing about the stories on our podcast. So I just wanted to say I really appreciate it. Oh, I'm, I'm for that stuff. And also all the diabetes like advice, like, it's been super helpful. I can't thank you enough. No, it's my pleasure, thank

Scott Benner 1:25:33
you for saying it's very kind of you. Thank you. I just make sense, right? If this many people are going to listen to the podcast, and a pretty large fraction of them are going to intersect these other issues, we should talk about them and try to make them things that, you know, come to mind and, and make you feel like, oh, I should ask somebody or push about this a little bit. Like, you know, I think another thing that we talked about that we almost don't talk about enough is like low iron anemia, things like that, that that intersect so many people and doctors will absolutely look right through it. Like you can have anemic numbers, and they'll just be like, Oh, you're anemic. That's it, but just what happens.

Adam 1:26:15
And like, it's funny how the ranges they use, like the reference ranges are just, they're just like a best guess. Like, everybody's a little bit different. And you know, one number for one person might be horrible for another person.

Scott Benner 1:26:26
Yeah. And no, it's stunning to me. Like, it's stunning to me to see somebody that like anemic and the doctor is just like, well, you're anemic. You should take a supplement. Like yeah, that'll help in 20 years. Thanks. Yeah, big help. I'm dying. Now. That's crazy. Yeah. And

Adam 1:26:41
literally, like, with the experience, I definitely like second guess a lot of like, opinions from doctors are like, you spent a lot more time doing your own research on the side like you, you take what they tell you and that add your own stuff. And also, I learned like, it's really important to advocate for, you know, what you want for yourself or your kids or whatever. They'll just do, like, I mean, every doctor is different. They're not all bad. Like there's no other times they just do like the minimum Right? Like, yeah, like probably just get stuck in their day to day and

Scott Benner 1:27:10
100% There are plenty of doctors, they'll see low numbers to go, Oh my God, you're anemic, we need to get you an infusion and get your blood work, you know, together so you can feel better and blah, blah. But just the amount of times that it's ignored or even in other like medical situations where you're having other problems. While you're anemic, too. We'll talk about that later. Like, we need to talk about that later. Like, stop that too. Like it's pretty simple to give someone an iron infusion. And and yet they they just act like it's not a thing. And then same thing with your TSH and you're talking to your doctor, I'm assuming you've listed your concerns. And then they see your TSH over two and they're like, it's fine. Yeah,

Adam 1:27:47
I went in there, like for that first test. And I had a whole list of like, the symptoms I was having. I was like, none of these are like, you know, it's not affecting my day to day life. They're all like kind of minor things, but they add up. Yeah, and even with that, it's like, Oh, your thyroid is good, like 2.75 It seems fine. And

Scott Benner 1:28:03
they are they are you, you just don't realize it until they get cleared up.

Adam 1:28:09
That's when you'll know even even after I had like I have a special endocrinologist now for thyroid, and even after like taking the 25 McG dosage for six weeks when I went back. She She like asked me if I wanted to increase my dosage. It was so weird. It was like, you know, your TSH is three like still like 3.35 or whatever it was. And she's like, do you want to try doubling the dose? And I was like, Should I try and like, from listening to you and stuff I I kind of knew like I wanted my values to go up. But she didn't like come out and say, I think we should double your dose. She like asked me the question, which was so bizarre. It was like, aren't you supposed to be the one like telling me what to do? Like, I don't know. It's just weird. Oh,

Scott Benner 1:28:49
no, it happens. Every time it happens. I stopped myself from going oh my god. What do you say? I

Adam 1:28:57
was like, I was like, I asked her what her opinion was. And she was like, I mean, I think you could try it if you want to. And I was like, okay, like, let's do it. It's just weird. Like, having so many different experiences.

Scott Benner 1:29:11
How many people do you hear on the podcast? Who a doctor says no to them? They go come on and the doctors, okay. Because you have no firm opinion on this. Like you just said no. And some people go, Oh, no. Okay, I guess no. And then some people go well come on and do it. And they don't even resist. They go Yeah, sure. Well, I mean, if you want to let's try that. Like you see, you have no medical opinion. You just said the first thing that popped into your head. And now that I've pushed back the tiniest bit, you're willing to change your opinion 180 degrees. And

Adam 1:29:38
then there's doctors like our first doctor who is like, definitely no, like, I'm not going to be your doctor kind of thing. So like there's such a big range of people that you have to deal with and learn and, you know, kind of fight for

Scott Benner 1:29:51
Adam. What I hear in your stories is you had a doctor who was didn't know what they were doing and then said they did and went the wrong way. And then you have another doctor who Who like sees the numbers? It's not right yet. And goes, I mean, it's up to you, Adam, a software engineer? Is that what you do? Is your software engineer? Yeah, great. Well put you in charge your thyroid decisions.

Adam 1:30:14
I mean, I found it's not easy getting like an endocrinology appointment these days, like how COVID and stuff I had to wait like months or whatever. So I dug around and found one who would like basically say, Yeah, I'll give you a prescription because I know there's some who you have to fight with a lot harder to get even get the thyroid medication with a two or three TSH. So Well, good for you, I probably will get a different doctor at some point. Like even my gastroenterologist for celiac like, I wouldn't say either from her great, like, I'm not gonna bash him or anything. But you can tell like, what knowledge level people have and how confident they are just by spending some time with them.

Scott Benner 1:30:50
I'll tell you right now, like, we live in a world where I'm fairly comfortable saying that if you can get a doctor who will give you lab results, and we'll be amenable to your suggestions about your medication, and you can go listen to the episode with Addy about thyroid, you can probably manage your thyroid better than many doctors that you're going to meet.

Adam 1:31:09
That is all for doing my own research. And as long as you have a doctor that will sign off on prescriptions and do your lab work, then yeah, that's all you really need. It's

Scott Benner 1:31:18
a bizarre statement, but mostly true.

Adam 1:31:21
Yeah. Sorry for going back. But I just thought about what we were talking one more thing about, like infants with diabetes is breastfeeding. I don't think we talked about that very much. But in some of like, the Facebook groups for young kids like all the time, you see, like, they just kind of give up on breastfeeding. Like, if you have like an eight month old, or nine months or 10 months or whatever, because it is really hard. And that just kind of like breaks my heart a little bit. Like, if that's like something you're trying to do. And you stop it because of the diabetes. Like, there's definitely ways to figure it out. It's a lot of work. But I guess the advice I would have for that is just like trial and error. And you can't just like wait with the carb ratios that they give you like, I think when we left the hospital, they like did some rough math. Like she had to pump some breast milk. And they're like, Okay, like this much feeding is my this much milk. And then they have like, breast milk typically has like this many carbs per ounce or whatever. So they were like, each feeding, why don't you just try to put an eight carbs or 10 carbs or whatever they said. And it didn't work at all. So like, you have to you have to do trial and error. But I just like you can like you can definitely figure it out and do it. You don't have to give up. Like if that's something you want to do. You don't have to give that up because of the diabetes like, yeah, it's hard, but you can figure it out. And you just think about, there's like a lot of fat and protein in breast milk. So you have to know, it's gonna hit hard at first because there's there's also sugar, but it'll, it'll like kind of stretch out over time. And it's, I think the hard part is like, when you're diagnosed at that young, like, it's so hard on the parents, like you have very little sleep as is because babies already wake up, you know, yeah, once or twice at the night without diabetes. And then with diabetes, it's like multiplied. And but the biggest help with that is having a pump, because you can dose like over time, you don't have to like wake up the baby or dose every like hour or whatever, spread it out and getting diluted insulin. And then like I think the ultimate, the ultimate thing you can do is do a do it yourself loop. Maybe like 75 Five, or some of the commercial options are good enough now. But yeah, just like you can do it, you just have to really try an error. And don't be afraid to, to like do more, do less like change the stuff yourself. Because if you go back and forth with your endo team, like it can take two or three days or a week before they come back with a recommendation on what to change. And they don't really know like, what it's like to care for a kid like even even somebody who has diabetes, like a child that young is so much different than like an adult.

Scott Benner 1:33:52
Oh my god, and where are they gonna get the feedback from about what it's even like from an infant? Right? Like you're

Adam 1:33:58
from it as a parent, you're, you're looking at the graph every five minutes, pick your you have way more data than they had, even if you send them the graphs. They don't know like, you know what time she ate something or what time she had milk or Yeah, like it's really all on you to figure out like you can get some advice from you know, the endo team, but if you don't like if you're not confident doing it yourself, like it's it's really hard to get right.

Scott Benner 1:34:24
That's a good place to stop out. And because that's great advice. So thank you. I really appreciate this. Thank you so much. It's an amazing, amazing experience you've had for such a short time and it's kind of you to come on and share like this so I appreciate

Adam 1:34:38
it. Yeah, of course.

Scott Benner 1:34:39
Yeah. Hold on. What is good talking to you. Oh no, I had a great time. Thank you so much. Hold on one second for me.

Arden has been getting her diabetes supplies from us med for three years. You can as well. Us med.com/ juicebox are called 888-721-1514. My thanks to us med for sponsoring this episode. And for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at juicebox podcast.com to us Med and all the sponsors. I'd like to thank Adam for coming on the show today and sharing this story. And I want to thank you for listening. If you're enjoying the podcast, please leave a five star rating and a thoughtful review in the podcast app that you're listening in right now.

Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com