#808 Teplizumab Trial Participant

December 13, 2022Scott Benner

Adele's child has type 1 diabetes and was part of the Teplizumab (Tzield) study.

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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 808 of the Juicebox Podcast

today we're going to be speaking with Adele, her child was in the Prisma trial. Now this was recorded about five months ago or so. And since then, to plus m OB has been FDA approved, and is now being sold under the brand name of tz yield to zeal Z. I don't know how they say it tz i e LD to Z old, healed zeal? Is the T silent is the Z silent is it healed? zeal, zeal, zeal? I don't know. Anyway, her kid was in the trial. It was a double blind study. But I think you'll hear while we're talking that it seems like her kid got the drug during the trial. If you don't know what double blind means, well, then that might not make much sense to you. But you'll figure it out as you're listening. All right, let me just say this and we'll get started. 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. He just occurred to me that you might not know what to play him on this. After the music, I'll explain.

So back in like, I don't know, March or April of 2021, I had Francisco Leone on the show, in Episode 452, called learning about the prism app. Now Francisco is the co founder of prevention bio, is like a PhD and really great guy who came on and talked all about type one diabetes, and the work that the company was doing at that time, which was to potentially be bringing to plus a mob to market if they could get an FDA approved. Francisco's an immunologist, and a self described auto immune aficionado, who is focused on eradicating autoimmune disease through early detection and prevention. Anyway, he comes on, he tells us all about this drug that they think you'll have to go listen to it holds off the onset of type one diabetes, and we talked about other stuff. It's a really good episode. Anyway, the drug got approved by the FDA. And I'd like to see if I can get the company back on at some point to talk more about it. But for now, what I have for you is Adele, and her story of her child who was on the to prism OB study. And when you go into a double blind study for research, some people get the drug, and some people get a placebo. And they never really tell you who is who. But I mean, if the drug is supposed to do something, and you find it happening, you kind of surmise you might be getting the drug. So this is Adele story of her child's experience in the trial, and I think you'll find it interesting. That's like the longest explanation of an episode I've ever done. You should listen to this episode. Also hang out for a second while I say this. This episode of The Juicebox Podcast is sponsored by I don't have my list in front of me. I don't know who it's sponsored by. I'm sorry. Hold on. Don't don't just don't want to hear about it. Episode What episode did I say it was 808 Okay, I got it. This episode of The Juicebox Podcast is sponsored by athletic greens, makers of ag one if you want the same drink I have every morning. You want a G one? Find out more and get started today at athletic greens.com forward slash Juicebox Podcast is also sponsored today. By us med get your diabetes supplies at the same place we do from us med to get started get a free benefits check at us med.com forward slash juice box or by calling 888-721-1514 Okay, long preamble. Cool episode. Appreciate you hanging out here while I get this all straight. Let's get going. Recording now.

Adele 4:19
Yeah, I don't know. I just thought I thought because like, you have the microphone and it just sounds a little bit different. So I thought maybe in real life it would sound

Scott Benner 4:27
well this isn't real life. I'm speaking through the microphone right now. True. So yeah, I wonder what I really do sound like right yeah, I don't know anymore either. Because in my ears I hear what you hear. Oh, yeah. Yeah, so I probably

Adele 4:43
does sound different I don't speak through microphones very often. So

Scott Benner 4:46
I'm saying though if I'm you know, I'm saying like if my voice really is I mean, let me be honest here I'm I'm running my audio through a couple of things. So you know, stuff to keep like popping out of my voice to like guide Don't like pop my PS. Like, takes hissing out of the sound. I'm not. Let's see what else I'm not doing much else to my voice like, I'm not overdriving it or, I mean, I have a little bit of like, there's a little gain behind it so that I don't have to struggle to speak. But I mean, mostly this is just about what I sound like I think.

Adele 5:25
Now that makes sense. I don't

Scott Benner 5:26
even know I forget now. I only hear myself through my ears. So I should record myself. Just on my iPhone, listen to myself.

Adele 5:34
Right? It's always I find is always different. When I hear myself on recording versus what I think I actually sound like,

Scott Benner 5:41
you got me thinking about it? Does this phone have a recording app? We're never gonna get to why you're on the podcast, we will. What would it? What would I record on my life? It's got to be like a recorder on here.

Adele 5:57
Oh, there is I record my children when they're being extra nasty. I'm like, This is what you sound like. Okay, what I have to listen to,

Scott Benner 6:06
I don't know why I'm thinking about this. So hard one, I just put the camera off. All right. So here's what I'm gonna do. I'm going to open up my camera. I'm going to record video. So I'm just going to record I'm going to hold this up to my mouth. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please Always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. Okay, now. I'm going to play that back. But I'm gonna take my headphones off. So I can hear myself should be considered advice, medical or otherwise, please Always consult a physician before making any changes to your health care plan. Or becoming bold with insulin. Hmm. All right, well, that's about what I sound like. I didn't realize

Adele 7:01
Oh, you must have so much fun with all the people you got to chat with.

Scott Benner 7:04
I do have a good time. I love this job. This is the the best job ever. My, my son and I are just texting a minute ago, because he's, you know, two weeks shy of graduating from his undergrad. And I know, he's exhausted. And he's looking for a break. And at the same time, he doesn't know what he's doing next. And I think that worries him. For sure. And I was I was just sharing with him that we were talking about my grades in high school. And is this one grade he's not thrilled with he's going to graduate. No trouble. But I think he's a little let down. He took two really difficult classes in his last semester, on top of a baseball season, which Oh, wow, COVID kind of forced that or otherwise, he would have split these classes up one in the fall one in the spring. And anyway, so it's not where he wants it to be. It's not terrible. And I said, My God, those are like the best grades I ever got. And I said, I'm the only published author who ever left my high school. I said, you know, I said, I've been able to find success in life. Don't worry about it, you know, you'll be okay. But I think at this moment, He's just worried about everything. Anyway,

Adele 8:12
and it's harder when you're young to like, when I was 22. I had no idea what I was doing in my life. Oh, sure. Now, I don't know, I think I have the best job ever. I have to argue with you a little bit on that I deliver babies for a living. And that's amazing.

Scott Benner 8:26
But you have to leave your house for that. That's true. I do. You don't even know if I'm dressed right now. Oh god. You imagine if you started showing up at those deliveries and you were just like, hey, Adele's here and a sports bra and a skirt. To get this done. Well, let's do it. I think people think I'm wearing a sports bra and a skirt. Because that's what came to my mind. It doesn't work with me. You know how when people say things you can think Well, that's what they're really thinking. Yeah, and it usually works out really well. My brain is so distorted that when I make stuff up, I I am literally pulling it from nowhere. So anyway, we should probably introduce you and start the podcast. What's your name? Sounds good. Adult. Udall Do you want your last name to be in this? No, it's

Adele 9:15
just your first name. Okay, well,

Scott Benner 9:16
you already said your last name. So I'll bleep it out. Do you have type one or do you? Are you the parent of someone with type one? What's your deal?

Adele 9:24
My son was diagnosed with type one last year. We're one year post diagnosis. How old is he? He has tat and he was diagnosed when he was nine.

Scott Benner 9:33
took away my opportunity to subtract one from 10 but okay.

Adele 9:39
Making it easy on you Scott.

Scott Benner 9:41
Taken away the parts where I get to feel good. Okay, kids 10 A diagnosis nine boy. You're a doll. How old are you?

Adele 9:52
I'm 45.

Scott Benner 9:55
And are you an OB or are you What do you do?

Adele 10:00
I mostly OB nurse I do some pediatrics as well.

Scott Benner 10:04
Okay nurse pediatrics very nice. And the other children at home.

Adele 10:08
I have another son who's six,

Scott Benner 10:10
six. How pissed were you? When Adele became famous?

Adele 10:14
Oh my god, that bad adult jokes just keep coming.

Scott Benner 10:18
Yeah, that was probably a bad day for you. gonna guess? Let's see, what else can you

Adele 10:24
say? Well, I'm older than she is. So she was actually named after me.

Scott Benner 10:30
Have you sent her a note? To let her know?

Adele 10:32
Exactly. I spoke with some of her colleagues as well. So

Scott Benner 10:35
it's just such a simple. It's such a simple thing. But I mean, your name is not common. And then this person pops up in the world becomes incredibly famous with your name. I just figured it's probably irritating. But you're okay with it to people?

Adele 10:51
I've got some pretty good comeback. So

Scott Benner 10:53
oh, I mean, how many people look at you and go, Hello. Oh my god. Right. All right. And even if people are saying Hi, do you have to think is this sarcasm about my name? What's going on? It's a lot of stress for you.

Adele 11:07
I don't know. It's pretty funny. Actually. I find it pretty entertaining. Oh, look at

Scott Benner 11:11
you. You have such a good way about you. What is going on? Are you from the south?

Adele 11:16
The west coast, the easygoing West Coast I live on in a vacation place. So my life is pretty, pretty chill. I feel like I'm on vacation every day.

Scott Benner 11:25
Just say you're on a half a gummy adult? We understand what's going on. Okay. So married? Yes, yes. When the little boy is diagnosed, complete surprise, something you were looking for? What was that moment? Like?

Adele 11:42
It was a complete surprise. At that moment. However, looking back in time, I think that he actually could have been diagnosed probably around age four or five.

Scott Benner 11:53
Here. Why do you think that?

Adele 11:55
Well, we noticed some behavioral issues with my child when he was little. And it wasn't like ADHD, or autism or anything really specific. But we noticed as soon as we would change his diet, go to really low carb, really high protein, eliminate any added sugar with anything and exercise on like crazy, he would kind of calm down and go back into like a normal child, like state, like he would just be really fun and easygoing, and kind of more, the bizarre behavior would really kind of disappear. And so at the time, you know, we're thinking what's going on with his child, but it was an easy fix. So we thought, well, maybe he's just not getting enough protein or felons, or he needs more stimulation. But I think looking back on it, I think that his blood sugar was getting a little bit high. And then by cutting those things out, we were probably bringing him back into a normal range, because he was just early on.

Scott Benner 12:45
Maybe he was in a really long honeymoon, because that's how that'd be a long time for four years or so. Yeah,

Adele 12:50
I think just maybe kind of the earlier phases of it. We have a lot of type one in our family. So maybe it was there. Or maybe I'm just looking back and saying, Well, that could have been who knows?

Scott Benner 13:01
Yeah, but you're saying this since his blood sugar's managed. Well, he's not like that anymore.

Adele 13:06
No, not at all. Interesting. He's really a different kid.

Scott Benner 13:09
Oh, well, that's great.

Adele 13:10
I mean, different a good way though, right? Yeah, definitely different in a good way.

Scott Benner 13:15
You didn't start running numbers for the mob or something like that. Because all this newfound clarity, it's like, Mom, I have way more clarity. Now I'm gonna. Can I loan shark? So what do you mean, there's a lot of type one in your family?

Adele 13:28
I have both on both sides. We have a lot of cousins with type one.

Scott Benner 13:33
How many give me a number on your husband side.

Adele 13:36
On my husband side, two on my side five.

Scott Benner 13:38
Whoa, look at you. Five cousins. So children of your aunts and uncles that kind of thing. Yeah. Not you though. Growing up,

Adele 13:51
not me. And no one in my immediate family.

Scott Benner 13:56
Did you think that those people were burdened by it and not you like to you grew up with cousins who had type one diabetes? Yes. Interesting. And no thought like, maybe I'll get it one day or my children could get it anything like that?

Adele 14:09
Not at all. It was just oh, it's in their, their families. Didn't even think that I would have a child with it. Wow. Want to hear something really bizarre though, right before he was diagnosed? Yeah. So my next door neighbor who is a fantastic person and we're really good friends. It was middle of COVID he was having an outdoor barbecue for his family. It was his grandson's third birthday and or fourth birthday, and he had been diagnosed with type one diabetes just a few months before that. So we went to this barbecue I met another person who actually introduced me to your podcast. And the next day I saw her in the pediatric unit her son was diagnosed with type one diabetes. Now these two people are best friends. One year later, I'm calling this girl being like, Hey, do you remember me? You're not gonna believe this, but I think my son has type one diabetes.

Scott Benner 15:02
And everyone else, you know, in the town got it on the same day, is that right? And now it's an ABC television show where you all live under a bubble. Is that correct? Yeah, totally remember under the dome? No. Sorry. It was a TV show whose premise I liked for five minutes. And then I was like, What are they doing the show? Not the point. That's that that isn't saying so these people, all within a year, you have three, three families diagnosed? Yes. Wow. No kidding.

Adele 15:31
And we they are my biggest support group. We have our diabetic wine group and Comox

Scott Benner 15:37
diabetic wine group. Now is that just an excuse to drink? Pretty much. Just just say that. We all have 10 fingers and toes, Scott. So we get together and we have a group about it. It's mainly mainly about the wine. So tell me something. What were the first signs for your son?

Adele 15:58
The first signs so we are really big cross country skiers. And so we are going up to the mountain frisky and he was just sobbing. He was just so tired. He didn't want to go. And that's not like him. And we just thought, Oh, he's just being whiny. And we're like, you're going and we got there. And he was just a disaster. And that was really just odd for him. And then he started getting up at night to pee. And he always had kind of gotten to the bathroom at night. So it wasn't that unusual. But it was a couple of times my husband's like, I don't know why he's getting up at night. This seems a bit odd. And then I had been working and when I work I work 12 hour, days and nights. So I'm pretty much gone for five days straight. And then we decided to go canoeing because it was beautiful out we we bought a brand new canoe. And we decided we're gonna go out for the day canoeing, so we leave our house, my everybody goes to the bathroom, because inevitably you get in the car and someone has to go, we get 15 minutes away from home. My son's like, I really gotta go like you've got to pull over now I'm going to wet my pants. Well, that's really unusual. I'm sure you just went to the bathroom. And then we got there, which is another 15 minutes away. So 30 minutes in total. And he'd gone to the bathroom three times. And I just went, Oh, my God, you have diabetes. And it wasn't really like there wasn't really anything else. It was just my complete gut instinct that that was what's going on. And then I emailed his teacher and I was like, I really want you to watch for these things. Is he drinking more? Is he going to the bathroom? Do you notice anything different with my son? And she emailed me back? And she was like, Yeah, I think I like he was filling up his water bottle quite a bit last week. I think I noticed that. And so immediately, I just went, Oh my gosh, I just gotta get him in. Right. And so I called my doctor. And it was kind of an interesting go of things. Because all the phone lines, the cell network was down for Rogers, which was with who I was with, so we had no phone service, but I went to work that day. And I fell in the doctor's office as soon as I got to work. And the doctor actually answered the phone because she thought it was the hospital calling. So I said hey, I am because I work in the hospital. We're all pretty close with the doctors. And so I just said, Hey, like, I need you to do this. For me. I think my son has diabetes. And she's like, well, you know, it could be a urinary tract infection. It could be a number of things. But I'll give you the the form for the bloodwork and we'll just go from there. So I called my husband, I was like get him from school, I need you to bring my son home. We need to test him right away. And I also had a ketone tester up from somebody that had been given. And so when we went down to the lab, I made him pee on a stick and I was like, oh my goodness just lit up. I had he had protein, glucose, ketones, all the things in his urine. So I just knew from that moment that that's what we're dealing with when you and so as well like being in a smaller hospital and knowing everybody I just said hey guys, like I'm taking her to emerge right now. So they do all the bloodwork that they would need for the emergency room. And then I took him in and they just we went from there. When

Scott Benner 18:41
you had the thought that he had diabetes, you said like it struck you did you actually say it out loud to him? Or was it a thought in your head?

Adele 18:48
I said it out loud to my husband. I said he's diabetic. And then my husband actually made him he started googling because he really loves Dr. Google. And so he started googling things. And then he made a pee in a cup and he was like, smell this. It doesn't smell like diabetes. diabetes smell sweet. smell sweet at all.

Scott Benner 19:06
You guys just sitting around sniffing pee together as a family? Yeah. So let the kidney on the side of the road by the chair. Did you stop at a restroom?

Adele 19:16
No. When he had to go to the washroom, he peed on the side of the road. We didn't I didn't make him pee or my husband didn't make him pee in a cup until we got home that night. So it was later on when we were at home.

Scott Benner 19:26
I'm just going to share with you that I enjoy peeing on the side of the road. My boys do. It's the greatest thing. One of the things I'm gonna miss most about my son graduated from college if he doesn't keep playing baseball is being in a field behind a tree somewhere. It's like my great simple pleasures. Like I forgot the bathroom. The buildings all the way over there. Those trees are right there. I'll be right back.

Adele 19:48
I coach five year old soccer. So we're pretty much always doing the same thing.

Scott Benner 19:51
Yeah, yeah. I mean, if you don't, if you haven't peed in the field, your kid doesn't play baseball. So okay, so interest Thanks. So now that he's at the hospital, do you find that your experience is either greater or lesser than it would be if you didn't work there?

Adele 20:12
I honestly feel like it was greater. Because so my son did not do well with blood or needles, he would get a paper cut, and he would see blood and he would scream like he was being murdered. He did not do well at all. So when we got his blood lab work done, it was a three person job, two people holding him down one person drawing the blood, we got into emerge, they wanted to start an IV on him. And then in walks this nurse that knows me, and she's like, Oh, Adele, you're my favorite nurse Oliver. I'm so happy. I love working with your mom. She's amazing. And then we just started chatting about things. And then he just calmed right down. And she popped an IV and like, there was nothing and he was like Mom, that didn't even hurt. He was just really, really easygoing about it. And then the physician that was on that night is actually one of his classmates, one of his friends, moms, so we kind of knew her as well. And I just felt like we really got exceptional care.

Scott Benner 21:07
I asked, because there are times that health care professionals come on, and they, I guess, they experience that doctors just assume they know so they don't explain anything to them. They just leave it like that. Go you get it. You're a nurse and you're like, you know, I deliver babies I'm not like a I'm not an endo. You know, like that kind of thing. Or you have you know friendlies around and they over explain and, and are really on your side and help. So that's why I asked really?

Adele 21:36
Yeah, I felt like we actually got a lot of explanations. I did have to ask about like, we were transferred to another hospital where I didn't have the same relationships with people. So once we did start getting our education, I did have to ask for a lot of things because I was like, honestly, I don't know how to use an insulin pen. You have to show me like you would show somebody that's never seen one before because I used syringes in the hospital. I don't know how this thing works. Yeah.

Scott Benner 22:00
You don't know how to catch a baby. And I don't know how to do this. Right. Like Exactly. Your work is specialized. So when he's How long has he spent in the hospital? He spent four days there was the NDK.

Adele 22:15
No, no, we actually, when I went in there, they were all pretty amazed. They were like, wow, you caught him really early.

Scott Benner 22:24
Is he is he honeymooning now or no? You're later? Yes. Yeah. Interesting. So you think that this is possible? This has been going on for a while you're guessing. But even after a year, you're still seeing honeymooning. So how does that present for you?

Adele 22:40
Right now. So we have an amazing endocrinologist. I love her to pieces. I worked with her in Vancouver quite a few years ago. She's absolutely amazing. We just had an appointment with her and we were talking about the honeymoon and Oliver's experience with honeymooning. And she said, you know, typically, because it's a Wednesday didn't drop dramatically fast. And his blood sugars didn't really come into range very dramatically. After diagnosis, she's really shocked that he's still in the honeymoon phase. So he's really, he's a large, 10 year old. He's very tall and very muscular. And he's using about anywhere from nine to 15 units of insulin a day, which for his size, is quite low. And some days he gets these crazy insulin surges where he really doesn't need any insulin at all. And so they feel like, that's really unusual, given the way that he presented at diagnosis, even though they felt like we caught him early. He wasn't in full blown DK, but he'd been kind of a slow burn.

Scott Benner 23:37
Did they test them like C peptide, things like that, that check to make sure he's type on?

Adele 23:41
Yes. All of us he tested positive for all of the antibodies and off the charts for all of them.

Scott Benner 23:45
Hey, way to go.

Adele 23:48
Right? To do it. Well,

Scott Benner 23:50
this is high scores. Why not? So I mean, the whole time you've been talking, I'm thinking to myself, you said west coast at first, and then I realized she's Canadian. She didn't mean cat. I thought you mean California. At first, I was like, No, you're you're deaf. I came here so pleasant. You know that about yourself? I imagined. Do you

Adele 24:07
have moments?

Scott Benner 24:09
Do you want to tell me about any of them?

Adele 24:12
We'll save that for the next one. Stop. Oh, I

Scott Benner 24:14
say all right, well, we're not getting that out. So you're on for a pretty specific reason. So now that we got your background together, I'd like to jump into it. So tell me about how a trial was brought to your attention.

Adele 24:30
It was quite interesting. We were about to leave the hospital. We just met and met with our new pediatrician and she was like, by the way, there's this clinical trial going on. In Vancouver. It's a lot of work. If you want if you're interested. here's the here's the thing, and just kind of toss it on her lap. I was like, Well, I feel like the diagnosis of diabetes. For a lot of people. It's very overwhelming. There's so much going on and you have to enter this trial within six weeks of diagnosis. But not only do you have to enter the trial you have to go through a pretty rigorous screening process. And you have to start the medication within six weeks of diagnosis is part of the criteria. And I thought it's probably hard to recruit a lot of children. And as well, I have a friend that really regretted not going into it because there's been a lot of benefits seen, or people feel like there's benefit potentially seen with this new medication. So I thought, let's give my child a chance to experience that. And if we're helping other kids in future generations, I feel like that would be really beneficial.

Scott Benner 25:30
So how So how long has he been in the trial? Like since he was diagnosed,

Adele 25:34
since he was like six weeks post diagnosis is when we started?

Scott Benner 25:38
And are you aware if he's getting the drug or? We're not?

Adele 25:46
As far as I'm aware, I think that he is getting the drug, mostly because of the reaction. So the reaction for children that are getting the medication is quite can be quite extreme, whereas the ones that are not tend to have no response or very minimal response. For Oliver. When he started the trials, we went down, we had to go to Vancouver, we're on an island, take a ferry across, get there, they have to do an oral glucose tolerance test. And that takes up the better part of the day. And then they give you a two hour long infusion of either a placebo or two plus a mob. And so we did the infusion, we went back to our suite, we're just relaxing, tuck him into bed at 2am. The Dexcom starts going off and he's going straight up, which he wasn't greatly controlled at the beginning of his diagnosis, but he was definitely we were seeing numbers mostly between six and 10 at night, and he wouldn't typically go straight up. So I felt him and he was extraordinarily hot he was and his blood sugar's shot straight up to 20. And I checked his temperature and it was 41 degrees. And of course, being the really prepared mom that I am I had absolutely nothing I didn't think to bring Tylenol or ibuprofen or anything with me. I just thought okay, we're going to this child probably won't get the medication. I had no idea what I was in for. And by more at four in the morning, I mean, thankfully I'm in Vancouver, everything is open at four o'clock. I can go out I get some Tylenol, run out super quick. And grab medicate him like crazy. And I got his temperature down to 39. But barely

Scott Benner 27:22
41 Celsius ism is a vicious. Yeah, fever. 105 Fahrenheit. That's crazy. Yeah. Wow. And so your point is you think he was having a reaction to something that was given to him? Exactly. Yeah. And since then, do you know other people in the trial?

Adele 27:45
Yeah, actually, it's been really neat because I've connected with people in various parts of the world because it's a worldwide trial. And so I've actually been in touch with people in Florida and California and locally and across Canada. So it's been really interesting to chat with some of the people that have experienced it. And mostly, the reaction is very much the same. They're like my child was quite responsive to it. I think my son's kind of been the most responsive in terms of how sick he got. But most most of the children have had some sort of reaction, whether it's a really bad rash, or fever or GI symptoms.

Scott Benner 28:21
Have you spoken to anybody who's had the placebo and said, I don't have any reactions? I don't know what you're talking about that you think they must have had the placebo? Yeah, I

Adele 28:29
have a good friend here that was also is also in the trial with her son. And she's like, you know, we haven't really seen any response with insulin needs or any response to the medication when he did get it.

Scott Benner 28:41
So what do you how do you pick through this on a second? So first of all, how often do you have to go to the trial center?

Adele 28:49
So initially, we were going every month. So at six weeks, you do your two week infusion period, and then you go back two weeks later, and then they have certain timeframes that you go back. So I've been going pretty much every month, November was our second round of the infusion. And then now we're kind of tapering off. So we go back Qatar every three months for a check in. We're going back in two weeks for our last glucose tolerance test.

Scott Benner 29:15
When in that first time when he gets the medication, he gets it for days in a row. Is that correct?

Adele 29:21
Yeah, he gets a 1010 or 12 day 12 day course of medication.

Scott Benner 29:27
So you go back every day for that amount of time and get a different infusion. Yep. Wow. It sounds like a trooper. That's

Adele 29:35
it was really intense. Like the first four days were so awful. I didn't think that he was going to complete it. I thought he was gonna say no, I'm not doing this. He had really intense fevers the second day, they couldn't get his fever down. So we ended up at the clinic for the full day and into the evening. And then he had really severe muscle spasms and then the third day he started complete nausea and vomiting. You It was really intense.

Scott Benner 30:01
Wow. Looking back now are you happy to

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looking back now are you happy to am? Yeah,

Adele 34:15
definitely in those moments, it was really scary because he was quite sick. And it was a lot more intense than I ever thought it would be. I never really anticipated that he would get such extreme side effects from it. But I think what we're seeing now is he's very stable and not really needing a lot of insulin, the majority of the time.

Scott Benner 34:34
So when when you go in initially for the trial, how do they I'm gonna say sell it to you. But that's not what I mean. You understand? I'm saying like, how was it presented to you? If you get this medication and it works for you. Here's what we think could happen. What did they tell you then?

Adele 34:52
They basically tell us they're looking at what could happen they don't tell you what the effects are because I think they don't really want to sway you in one direction or the other, but they're lucky, they tell you that it's a medication that's designed to decrease the amount of audit antibodies, because when you're first diagnosed, you tend to have about 20 to 30% pancreatic function. And then the antibodies over time will destroy the remainder of that. So this medication is used to destroy those antibodies to keep that pancreatic function for as long as possible. And in the hopes that it will stabilize blood sugars and decrease insulin needs.

Scott Benner 35:26
And you think that's happening?

Adele 35:28
I feel like it is our endocrinologist thinks that she thinks it's all the trial medication that is doing that. What do you mean, she really thinks that he she's really curious why he's still in honey is honeymoon and how little insulin he actually needs and how stable his numbers have been. She's just because as she said, typically, when she sees results like this, the kids tend to be very early on a diagnosis, like usually they are being screened. And they have a sibling with type one or something like that. And they're quite early on, and their agencies will drop from whatever it is 789 at diagnosis to kind of five to six pretty quickly after starting insulin. And then they're they tend to need very little insulin from the start, and then eventually will creep up, whereas all over his agency diagnosis, I think was 7.9. And then he kind of just dropped a little bit at a time for quite a while until now, he's kind of sitting between 5.5 and six. So she thinks, typically, because we didn't see that initial large drop, that he wouldn't have stayed in his honeymoon as long as he is. And that his insulin needs wouldn't be as low as they are right now.

Scott Benner 36:39
So she believes that the Tomislav is helping to yeah, by the way, tough please a mob. Right. Is that right?

Adele 36:48
It's like a tongue twister.

Scott Benner 36:49
I get it wrong almost every time. So she thinks it's working you do you believe it's working and don't want to be too hopeful about it? Like is that the idea?

Adele 36:59
I think it's working i The hard part is, I feel like we're seeing some benefit from it. But now I'm like, now what? Because the trial, they finished taking kids into the trial. It's not been approved anywhere for use with type one diabetes. So there's no opportunity to see well, would another dose kind of keep that going for even longer?

Scott Benner 37:20
And there's there's no opportunity for that whatsoever. Because it's not because this is a trial to try to get this through the FDA. Yes. Right. So it's not like, it's not like they can just say, hey, take more. It's okay. We want you to have it, they might want you to have it. They can't give it to you outside of the trial. Exactly. You can't sign back up for the trial for it, because they they're not doing a trial on somebody. Two years out. They're doing this one year trial.

Adele 37:45
Yeah, well, it's actually. So it's 18 months in total is a time that we owe Okay, from start to finish.

Scott Benner 37:51
Hmm, is that sad word, do you? I mean, I guess what I'm trying to find out is, first of all, I think this is amazing that you guys are doing this, it's a lot of effort, you could have ended up with a placebo. You know, so just thank you from everybody for doing it. That's that part's amazing. But are you sad now that it's over? Like, is there a part of you that's like, well, if we can't help him, what's the point?

Adele 38:16
Actually, no, I feel like, I'm hoping that this can benefit kids that are being diagnosed or being detected prior to diagnosis with antibodies, because they're hoping to catch kids prior to even showing signs and symptoms of type one, just knowing that they have the antibodies to kind of give that as a preventative method to delay the onset of type one diabetes. And I'm also just thankful for this time that we've had that he's been so stable and on such little insulin.

Scott Benner 38:45
Is it strange to think that you might not really even know what you're doing yet. And that diabetes is actually going to start over again, when the trial is over?

Adele 38:54
Not really, because I feel like I've gained so much information over the past year, that I feel like we're we're getting there. And I'm always kind of prepared for when things are going to change because it really was diabetes, he gets sick, something changes, he goes out and runs a marathon, something else changes. So it's kind of always evolving. It's like the math question. That's always changing. One plus one never makes two.

Scott Benner 39:19
And so at the moment, you're just doing everything you would normally be doing but you're doing it with less insulin.

Adele 39:25
Yeah, yeah. And some too often no insulin at all.

Scott Benner 39:29
How long for how what kind of structures? Could you by the way? Is he on a pump? Or? Yeah, he's

Adele 39:34
on Omni pod. Okay, so

Scott Benner 39:35
are there times when you just have to take a pump off?

Adele 39:39
Yeah, I just turn it I just dial it down to zero. And we just like the other day he had a track and field meet at school, and he ran a 400 meter race. And after that, I couldn't give him insulin for anything. He had pizza. He had cookies. We had to turn out he still went low. After that. We had to turn off his basil all night. Oh, He just didn't need any and he can come sometimes go for two or three days, then typically he'll need a little bit of something. A start so it doesn't really last for very long, but he's still even when he does need a little bit. He's kind of often eight or nine. Okay. 15 is like a big day for us when you need to, we need to 15 units and usually that's like a birthday party or just chilling on the couch or he's getting sick or something like that.

Scott Benner 40:24
That's total insulin to not just Basal that's total insulin. Yeah. How much do you weigh? Did you say?

Adele 40:30
He weighs 90 pounds?

Scott Benner 40:36
10 years old? Yes. Yeah. Wow,

Adele 40:40
that's pretty tall. He's got size nine men's feet already is gonna be a big kid.

Scott Benner 40:45
That's just crazy, though, because it's possible that he could use as much as like 20 units of just Basal insulin with that weight.

Adele 40:52
Right. A lot of my friends are on a one to five carb ratio. We're one to 45, sometimes one to 100.

Scott Benner 40:59
Yeah, no kidding. Wow. So it is? I mean, listen, I guess you could say he could have had a honeymoon for this long. But I mean, it sure feels like that the trial is is helping him.

Adele 41:13
Definitely. That is the one hard thing with the trial is the honeymoon is not controlled, like, no two children have the same honeymoon phase. And some kids will just naturally have a prolonged honeymoon phase with no insulin. And some kids will have a really short two week long honeymoon phase. And even when their honeymoon they just need a little bit less insulin than maybe they would. Regular Yeah.

Scott Benner 41:35
Wow. So do you have when you need to talk to somebody about diabetes? Can you talk to anybody who's using insulin? Or is it more difficult for to find somebody who understands the scenario? And

Adele 41:50
sometimes it can be quite difficult because people that they don't relate to like, What do you mean, he doesn't need insulin for this, or he's done some activity. And now for days on end, he, we can't give them or any insulin because it just takes him. So it is definitely a little bit of a challenge to find because like our endocrinologist, even at first was like, well, he needs a little bit of insulin. And I was like, but if I give them a little bit of insulin, especially last summer, he would go low, and he would just stay low. So it was really challenging. And even now when I have questions, I go to my team and I'm like, Okay, well, this is what's going on. And they're like, I don't even know what to tell you.

Scott Benner 42:27
Right? Everybody's just got to guess because, you know, based on their best guess. I mean, it makes sense. It all makes sense. It's just, it's kind of fascinating. In the in the meantime, have you had your other child check by trial net?

Adele 42:41
Not yet. I am just waiting for it to come in the mail. Oh, you are thinking of doing it? Yeah, I'm gonna get them tested. Especially with so much in our family. I just feel like it's worthwhile, right.

Scott Benner 42:53
No, no, of course. I wondered if you had any other autoimmune in your family on your side first.

Adele 43:00
My side? Yes, we have. My dad has Crohn's disease. Crohn's that's really about it.

Scott Benner 43:06
No kidding. Celiac. You got a bipolar uncle? No, nothing. Just that's pretty, pretty boring. Really? I don't know. You've got five cousins that have type one diabetes and your kids in a really cool drug trial. You're not that boring. And you catch babies. They're Canadian babies. But still that counts. You know? Babies are pretty exciting. You can't judge babies by what country they're born in. You absolutely are just catching that's it's a really how did you get that job by the way?

Adele 43:37
Oh, lots of training. Well, honestly, it's that's a whole nother podcast on its on its own. I really didn't know what I was going to be when I grew up. And I've gone through many different careers. And now I'm kind of quote experienced, I don't feel like I am all that much. But yeah, I've gone from one thing to the next. And this is kind of where I landed. I went NICU, neonatal intensive care I did for a while before that, and then I went into labor and delivery and I just love it.

Scott Benner 44:03
Well, neonatal that's a tough one, right? I have a friend who does that you have to have a certain kind of makeup to be around sick babies and to not have it really impacted terribly. Do you agree with that?

Adele 44:17
Possibly. I loved it. I felt like it was absolutely amazing. There was definitely heartbreaking cases. But when you have the heartbreak, it's actually a really a privilege to be with somebody at the most difficult time of their life and to make it as not really good isn't a word for it, but just make it as peaceful as you possibly can. But mostly, the good times outweigh the bad, which is why I stay at it.

Scott Benner 44:45
We have to we have to take a detour here for a second. So listen, just go with me for a second. Okay. You're really really nice. Why? What happened? You're good parents. Did you see something terrible the Did Jesus speak to you in a dream? What has happened? Why are you so the I tried? I didn't try to make you say something negative, but I led all of your questions at the beginning in a negative direction to see what you would do. And you You did not follow that direction once. What if I'm being serious now? Don't laugh, because you're gonna think I'm joking around. Why are you so nice? Don't tell me it's because you're Canadian.

Adele 45:22
Oh, that's exactly what was gonna say. It's because I'm Canadian. Come on. We're also for nice up here.

Scott Benner 45:27
You seriously, yeah. Are you aware of this about yourself?

Adele 45:31
Well, I think it's probably what makes me a good nurse. Also, my husband, he would say he's, he thinks that I'm the least compassionate person around and he's like, I don't know how you make you. How you're a good nurse because you're so compassionate. No,

Scott Benner 45:45
yeah, you're his opinion of you is not important. Because obviously you're torturing him for sport. That's a different situation. Yeah, I'm talking about I'm talking about the rest of us. So seriously, traumatic thing in childhood. Are you? Are you compensating for something? Are you really happy? What is happening? Oh, you don't know.

Adele 46:05
I'm just a pretty easygoing person, I think,

Scott Benner 46:07
wow. So good for you congratulate you don't even realize you won, like some sort of a lottery?

Adele 46:13
Oh, no, you know, what it is, is, honestly, I feel lucky to be alive after what happened last year. I think that that's actually changed my attitude and everything a lot more. Because during the midst of the whole clinical trial that Oliver was in, he was really sick. And then that wasn't enough, I got really sick. And then I ended up in the hospital for quite a long time, and just about passed away. So I feel really lucky.

Scott Benner 46:42
Although bear flu, what happened? How'd you get sick?

Adele 46:45
Oh, I had. So with all of her my child that has type one diabetes, he had a pretty traumatic entry into the world, he decided to come out umbilical cord first. And which is not really a great way to decide to come into the world. So I ended up with a C section with him. And it causes a lot of scar tissue and that scar tissue wraps around your small intestine. And when it strangulate off part of that, it can be quite terrible. And so being young and healthy, nobody really thinks that there's something like that going on. They're just like, Oh, you have period cramps? Oh, well, maybe you have a little bit of a GI bug. And, of course, when I do things I do really, really well. So I was like, No, I'm gonna show you guys all that you're all wrong. I'm gonna just have a small bowel obstruction. And yeah.

Scott Benner 47:35
So you had a small bowel obstruction that almost killed you?

Adele 47:38
Yeah. Mostly because nobody really knew how I thought it was that severe because I'm so young and healthy and fit. And I have a really high pain tolerance to you. I don't really. I'm kind of nervous about being a hypochondriac. So I tend to not really go to doctors for anything, I tend to just wait until something goes really wrong.

Scott Benner 47:56
I was gonna say maybe it's just that you're in such a good mood that people like she's not as much pain as she's saying, look at her. She's smiling. Like, are you one of those people who's standing there telling me I think I have a small bowel obstruction. But you're saying it with a smile on your face, and then asking me how I'm doing? Pretty much. Yeah. Okay. Like,

Adele 48:12
feel the cramping. Like, it's kind of like labor pains. And the first thing they're like, Oh, you're pregnant? Like, no, I'm too old for that.

Scott Benner 48:21
young enough to be healthy, too old.

Adele 48:22
Yes, exactly.

Scott Benner 48:24
So to be so prior to this experience? Were you a little more morose than you are now or? No? I think no, I think this is how you are.

Adele 48:39
It could be partly how I am. I definitely feel like with all that's happened in the last year, a whole new kind of sense of purpose. And just a really, can you talk about a sense of gratitude?

Scott Benner 48:54
Yeah. Can you talk about that for a second? What about your experience makes you feel that way?

Adele 48:59
I think just being thankful that I'm alive, because quite honestly, like when they took me into the operating room by that point, I was so sick that I just went unconscious. And I was shocked wake up, I was like, Wow, I can't believe that I've actually survived this. It was a long recovery and lots of complications with it. And the fact that and the mortality rate is somewhere between 60 to 80% for what I had, and how severe I had it. So I just really was thankful that I feel really like I got a second chance at life and just able to be there for my children.

Scott Benner 49:39
All of this is from scar tissue from a C section because that kid tried to come out belly first and they couldn't get him spun around. And so quickly, and then I don't understand like the SCART. I mean, it's a fairly common procedure this point right a C section. So there's follow up how did the follow up not point to the Sisa section

Adele 50:01
because it just goes over time and the C section I had with my son was not a normal C section either. Because it was so emergent. So it was very, it was more traumatic C section they had to cut in many different directions. And

Scott Benner 50:15
how big was the baby?

Adele 50:18
Oh, he was teeny was six pounds.

Scott Benner 50:19
How big are you?

Adele 50:21
I'm Reese. I'm 565 730 pounds. All right.

Scott Benner 50:27
Gotta go person. So but they had to, they opened up like a Christmas present to get the baby out. Pretty much. That's terrible. What was the recovery? Like, even before you knew you weren't well?

Adele 50:40
From my C section?

Scott Benner 50:41
Yeah, like was it longer than you would have expected?

Adele 50:45
No, it wasn't at all. Hey, I kind of bounce back pretty quickly from that. Alright,

Scott Benner 50:50
Adele, I'm gonna pull some horribleness out of you. And if I can't do it, you're you're the big winner this week. Okay. Sure. Is there no irony that you help people have smooth deliveries for their babies, and you couldn't get one that didn't make you mad?

Adele 51:04
Oh, that's the nurse curse, the nurse curse?

Scott Benner 51:07
Are you trying to name the episode though? Because you've done it.

Adele 51:15
That's a commonly known thing. We always joke about how all of the labor and delivery nurses come in to have their babies and something does not go as planned.

Scott Benner 51:24
There, can I share something with you that will make me sound I don't know how it's gonna make me sound. But it doesn't happen to me. Often. I'm not. I don't want anybody to think that I'm running around feeling like this constantly, because I have a good life. And I'm very happy. But there have been times in the past or something's gotten sideways in my life. Not usually for me, but for a loved one. And it's hard not to think I help so many people. How could this go bad for me? You know what I mean? Like you're putting so much good into the world. And you think I in this moment when I need it. I can't get a little spoonful of it here. You know. But anyway, I would be lying if I said I hadn't thought that way once or twice. But overall, it's kind of I mean, it's really adult, right? Like, that's not how the world works. It's totally Yeah, it's good to put nice stuff in the world doesn't mean you're good at back. And it doesn't mean you shouldn't put good things into the world either. But I just I mean, it just struck me. I was like, how did you get a bad delivery? You don't I mean, that's just it's crazy. All right. Look at you. All right, the nurse curse that says mean as you're gonna get. How do you torture that husband? How come he doesn't think you're so nice.

Adele 52:38
Oh, because when he gets sick, I'm like, you're fine. It's like

Scott Benner 52:43
that's it. All right. Okay, how does so we know that that Oliver manages with Omni pod when he needs insulin. I'm assuming he has a CGM as well.

Adele 52:54
Yeah, he has a CGM. We are mostly on Dexcom because that's part of the trial is for for trying Dexcom we struggle with it a little bit because for some reason, it always reads low when he's not actually low. And then eventually it craps out because it's been reading low for so long. So according to Dexcom, his he's like 50%, low and 50% in range.

Scott Benner 53:17
What are we calling low?

Adele 53:20
Oh, it just says low. That's what Dexcom says he Well, he goes like 2.5 and then it just reads low. Is he well hydrated. He's very well hydrated. Drink lots of water.

Scott Benner 53:30
You ever try calibrating the Dexcom?

Adele 53:33
I do. And then usually it'll go to fail after I calibrate it. So I stopped

Scott Benner 53:37
interest is the very very low to calibrate is very lean.

Adele 53:41
He's really He's really tall and skinny. You do a pencil here muscle

Scott Benner 53:45
you do a pinch up when you put it on him.

Adele 53:47
Yep, I do the pinch up. I do the shallow insertion. I've like had them. I've heard about this, like upside down insertion. I've tried that.

Scott Benner 53:55
Have you ever tried putting one on yourself to see if it works just for fun? And it works? Okay on you?

Adele 54:01
Yeah, I got a lot more fat than he does.

Scott Benner 54:05
I have more substance. I have more than he

Adele 54:09
does. Yeah, I've tried everything that he does, because I want to know what it feels like. So I can kind of relate to him. So I've had it and it's really cool to see what your own blood sugar does.

Scott Benner 54:17
It's actually I'm gonna say this, it's actually incredibly valuable. Because being able to see how meals impact somebody who, whose pancreas is working gives you a great idea of what it is you're shooting for in life with diabetes.

Adele 54:32
Oh, definitely. And just to see like, how do I feel when I go low? Because I go low a lot. And then what makes me go really, really high and I mean, high for me is eight or nine I don't get very high very often. But it was just really fascinating to see those different things and things that you think that maybe would go really high and you don't. I wonder if that's an effective exercise.

Scott Benner 54:56
I just got done interviewing Jake from Beck's Komm just the other day actually. And the new one, that G seven, when it comes out will have a much shorter sensor wire. The one on the G six is 13 millimeters, and you're Canadian. So you actually have an idea of what I mean when I say that, unlike Americans who are like, I don't know what that means. But now it's going to be down to six millimeters. And it's going to go in on a 90 instead of on a 45. And I wonder if even that might not help you a little bit

Adele 55:27
interesting. Yeah, cuz a Libra works amazing for us.

Scott Benner 55:30
Then maybe that's going to be something you figure out here. Interesting.

Adele 55:34
I'm really hoping for the g7 to come out sooner than later. But we're in Canada, everything is about five years behind anywhere else in the world.

Scott Benner 55:41
You're over exaggerating a little Is it five years?

Adele 55:43
Pretty much you guys got Omnipod five, that's gonna be like in the next 10 years in Canada.

Scott Benner 55:50
It is. I know nothing, but it is not gonna take 10 years, that's for sure.

Adele 55:56
I'm just like, rubbing it in.

Scott Benner 55:58
Well, it's Is that what you're saying? The people online are super excited. They're getting their their emails about on the pod five and stuff like that. Yeah, have you? I guess you wouldn't consider even using an algorithm until you can get a CGM. It's working well for your son too.

Adele 56:12
Yeah, yeah, we have to figure out how to get a CGM. He's pretty particular about where he'll wear things too. And because it's his body, I want to have let them have some control over things. So I just tried to go with it. But he's like, I have other areas on him. I'm like, well, there's little bit more meat here. Like let's try this, but he just won't go for it.

Scott Benner 56:30
So you ever just try bribing him?

Adele 56:33
Oh, gosh, yes. Yeah. A lot of brides

Scott Benner 56:37
it's Vancouver. Yeah, that's pretty much a city Vancouver, right.

Adele 56:40
Thank you is the city Yeah, I'm on the island though. So I'm on my own little Oh, I smaller smaller place.

Scott Benner 56:48
How long does it take you to get off the island?

Adele 56:50
From where I live it's an hour ish plus, well, almost two hours to the ferry terminal and then another two hour ferry.

Scott Benner 56:57
Wow. So you don't leave that often? No.

Adele 57:02
Once you're on the ferry, we don't even cross the bridge to go from one side of the town to the other.

Scott Benner 57:08
won't even go to the other side of the island. Exactly. Too far. Nevermind. Don't need

Adele 57:14
it. Oh, you live on that side of the 17th Street Bridge. Nevermind. Oh,

Scott Benner 57:17
yeah. I see what you're saying. Right. Right. Yeah. Those people over there how big is the island? Do you know I can look if you don't

Adele 57:28
big actually quite big. Like there's kind of three main cities on it. And then there's a ton of smaller areas to go visit.

Scott Benner 57:37
It says let's see. The island is 456 kilometers in length 100 kilometers and with 332 1000 squared Hmm, I wonder. Vancouver Island size. Perspective. Let me see if I can find out what else it's here putting vancouver island into perspective. Oh the internet. Thank you internet. That's that's a map. I need words. It's not helpful. New Zealand maybe. Okay. comparison, a list of countries at the Vancouver Island is larger than Belgium. Albania This is not Equatorial Guinea. This is not this is not a flex. Adopt we Cyprus Qatar. The Bahamas is right. It's not that big. Were you born there? No,

Adele 58:48
I'm from Saskatchewan. The prairies.

Scott Benner 58:51
How do you end up there? The boy. The boy take you

Adele 58:55
know, I just need the I was ready for change.

Scott Benner 58:58
I see. I think that's the spot where we should dig to find out where your darkness is. But I'm gonna leave you alone? Because it's not why you're on the podcast, but I'm figuring this out as though I could get this straight. You don't I mean? Exactly. All right. What's your favorite Adele song? Do you not like Adele?

Adele 59:22
I like her. I don't know all her songs off by heart though.

Scott Benner 59:26
Interesting. You're not an Adele fan. That seems purposeful. I feel like you're avoiding this on purpose. Do you want to know

Adele 59:39
that sounds good songs.

Scott Benner 59:40
Do you want to know my favorite adults? Hello? No. There's a version of I think it's when we were young that she didn't Oh yeah. That she did in some studio. It's and there's a video of it online. And it's so it's like a live recorded version. It's my favorite version of any of her songs? So that's it. That's mine, or yours when we were young? And I don't know, I don't know if it's the song or it's the performance? I can't tell you. I think it might be Yeah. All right. Why did you want to 52 minutes later, Adele, why did you want to come on the podcast? What did you want people to know about the about the trial,

Adele 1:00:21
there's a lot of people that have really been interested in, they just want to know more about the medication and what it does, and different people's experience with it. So that's just what I wanted to talk about is kind of what the experience looked like, maybe some hope for what things could look like in the future for kids that are newly diagnosed, and just getting into a clinical trial and kind of things to think about, like, really the, the expectation of going into it, and how difficult really, it is at diagnosis to choose to do that. And then how intense it was, I really, I had no idea that it was going to be so involved and that my child would have the effects good and bad that he did.

Scott Benner 1:01:01
Were you compensated for it. No, not Allah,

Adele 1:01:06
we get ducks con is part of the trial. And they pay for our trips to go and like, go there and stuff like that. So they pay for the ferry travel. And when we have to stay overnight, there's things like that, yeah,

Scott Benner 1:01:20
that doesn't seem like a bonus to me. I'm old enough now like you just paying for my travel. It's not, that doesn't seem like compensation. So the other day. So I don't know if I've explained it here and there. But the T one D exchange is not a sponsor of the podcast, meaning they don't pay me to say T one D exchange. However, when people sign up through my link, I'm compensated when somebody completes the survey. So there's just it's it's technical, like they're not a sponsor of the podcast, but yet, I am compensated by the link. So you know, anyway, just so that that's clear. So they put this thing out the other day. And they said that the first patient dose with VX 880, a stem cell derived potential therapy to treat type one diabetes has achieved groundbreaking insulin independence that day 207 270 With an HB a one to 5.2. This means the patient is producing enough insulin to maintain normal blood sugar levels. It goes on to say vertex also announced the clinical hold by the FDA as they gather more information about those tests, escalation. They're working with the FDA, blah, blah, blah. And, and the reason I bring it up, because here's the the end of the statement, the T one D exchange has been assisting with recruiting for the study of this treatment approach. And I, I reposted that, because I tell people all the time, I'm like, I know I'm telling you to take the survey. But you could actually be contacted about studies and all kinds of things. Like there's people who listened to the podcast, who were index comedies of studies, they were actually compensated for it and got to help Dexcom work on, you know, a better and he's there for the g7. Like, there's all these things, but it's so difficult to get people to help with these things. Which is why I'm constantly saying like, go to T one D exchange.org, forward slash juicebox. Take the survey, because that's how difficult it is for them, just to get the people they need to do that. And not everyone's going to be as nice as you are. So and

Adele 1:03:19
that's why we went into the study is just really is because it's hard, especially with kids, I mean, you're gonna give a trial medication to a child, that's pretty big deal, right? With to see how their body reacts to it. And I mean, I did a lot of research on the medication. And this medication has been around for quite a long time. And it's used in a variety of autoimmune therapies. So I had no question that it was safe. But I felt like it's really hard, especially when you're now telling a parent that your child has a life changing diagnosis, and you need to do all of these things. But don't give them too much insulin because it could kill them. But don't give them too little because that could also kill them. And then you're like, here's the study that you could be in, but we don't know anything about it and just it's so much coming at you all at once. And then you know, to try to recruit enough people to actually make a change or to show some benefit. I think that that's a really really hard thing to do especially when you involve kids and not that I want to make my child kind of a guinea pig for anything but if I can help him and have him be get some benefit as well as helping other kids I think that that's really worth it.

Scott Benner 1:04:27
Yeah, I have to say like it the interesting thing about the tea Wendy exchanged as an example and to build on this idea is that they're not necessarily saying you need to be in a trial. They're actually saying if you could just fill out the survey, your answers help people and that's difficult to do. I'll tell you right now, I have to drive. I have to drive 10 clicks to get three people to take the survey. And that's a lot and on top of that getting stuck getting a have someone who can even drive 10 clicks is difficult. So there's difficulty layered on top of difficulty just to get your feedback, forget you to get, you know, forget getting into a trial. And I understand it, like, I'm not coming down on people like lot people's lives are busy, you're not looking for another thing to do a lot of the times, but the truth is when you do these things, I mean, there could be some real significant benefit for people. And those people might end up being you one day too, or if it's not you. I mean, you know, look at Adele situation, she got five cousins, and now her kid has it. So maybe Adele's Kiddle have five cousins, and none of them will have diabetes, and then some buddies grandchild down the road, we'll have it like, you're going to end up helping somebody. But you know, again, it's I know, people are busy. That's what I think makes it special that you guys did this. So thank you very much.

Adele 1:05:55
It was it was definitely eye opening. And I don't know how long we're gonna keep benefiting from it. But right now he's super stable and not a ton of insulin. So I will just take it.

Scott Benner 1:06:06
Yeah. Does he know he's helping people?

Adele 1:06:10
Yeah, he really, it was his choice. Like, I give him a choice with a reasonable choice with as much or as little as we can. And so I told him, it was his choice. Like, if he doesn't want to do this, we don't have to do it. And if at any point during the trial, that he decided that this was too much for him, he didn't have to go through with it. So I made it his choice. And we talked about why he was doing it and what the importance was. And so I think he was really when he was diagnosed, I was really shocked at my child. Because really, the first thing like, one of the first things I said to him is, you know, I know it sucks, like this is really, you know, it's really crappy. But unfortunately, I guess you'll get used to it. He's like, Oh, mum, fortunately, I'm going to get used to this, this is going to be fine. diabetes is no big deal. We've got this. And then Then one day, we first got our pump on and this is really quite funny or cute. We are driving home. And they of course, set up our pump settings quite low and quite conservative. And so he was starting to go a little bit high. So I was like, oh, Oliver, what do you think we should do? He's like, Oh, Mom, that's easy. We just have to be bold with insulin.

Scott Benner 1:07:16
You let that boy listen to this podcast, I think, Oh,

Adele 1:07:18
yeah. He's listened to the podcast since day one. My girlfriend told me about it. And he's always been really curious. He picks up the episodes. And

Scott Benner 1:07:27
I tell people and kids listen, and that's why I'm not. I try not to be too dirt. But that's very cool. Good for him. He also has your attitude, obviously.

Adele 1:07:40
Well, I was shocked, because I would have never expected that from him at all. That he would be so positive, because I mean, like I said, he would get a paper cut and scream like his arm was being chopped off. And for him to just suddenly be like, okay, yeah, finger pokes no big deal. Or like, yeah, I've got this. And just, oh, we need a little bit more insulin. Okay, I'll do another poke. I was just shocked. Okay. And so that to this day, he's still maintained the same attitude of, I can do whatever I want. I've got this and we've got a pump, we'll just dial it in. He's really, really good.

Scott Benner 1:08:12
That's great. I really is exciting to hear. Well, cool. Is there anything we haven't talked about that we should have?

Adele 1:08:19
Well, that goes on the next podcast. What do you you keep saying

Scott Benner 1:08:22
that? What else are you going to tell me about?

Adele 1:08:24
I don't know, Scott.

Scott Benner 1:08:27
You have nothing. You're just trying to sound like you're

Adele 1:08:29
gonna talk about the nurse curse. And well, the nurse or things related to

Scott Benner 1:08:33
it. I think I figured out that nurse curse, the nurse care sounds like you help other people and then you get screwed nurse.

Adele 1:08:39
Also, the one thing is, because I do work in pediatrics, I see a lot of really terrible stuff. And so I'm always like, you know what, it could be a lot worse.

Scott Benner 1:08:50
What terrible stuff do you say?

Adele 1:08:52
Oh, you see, like, kids with terminal cancer or brain hemorrhages are just really, really terrible things. So

Scott Benner 1:09:03
that's really is something. Unfortunately, with kids, it

Adele 1:09:06
doesn't happen very often. It's pretty rare. But when things go wrong, it can go really wrong. Yeah.

Scott Benner 1:09:11
And then you can't get is that island prepared to help you? Or is it? I mean, how many times you have to fly somebody off that island to get medical care

Adele 1:09:20
a lot? Well, especially being in a smaller community. I mean, even just for our very basic diabetic care, we have to go to a bigger city. We don't have any of the resources in our community. We have to drive an hour one way or the other to go to a place that has an educator for kids and a care provider. Do you know then our endocrinologist is in Vancouver, so we have zoom appointments with her every few months? That's what

Scott Benner 1:09:46
I was going to ask. Yeah, Where's where's the, the endocrinologist that wow, that's really something. Well, you are. You're delightful Adele. I don't know what to say. I mean, you just there's no crack in your armor or your it's very real deep and you don't want Tell me when we stopped the recording. I'm just going to ask you very quickly one question and then and then I'll let you go on with your life. Does that seem fair? Sounds good. All right, thank you for doing this hold on one second.

A huge thanks to Adele for coming on the show and sharing that story. I also want to thank Athletic Greens makers of ag one and remind you that you can get a free year supply of vitamin D and five free travel packs with your first order at athletic greens.com forward slash juice box. And don't forget, you can get your diabetes supplies the same way we do from us med us med.com forward slash juicebox or call 888-721-1514. If you're enjoying the Juicebox Podcast, please share it with someone else who you think might also enjoy it. Make sure you're subscribed in a podcast app. And don't forget to check out the private Facebook group Juicebox Podcast type one diabetes. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.