Scott Benner 12/13/22 Scott Benner 12/13/22

#808 Teplizumab Trial Participant

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.

#807 After Dark: One Thing After Another

Kelly has a child with type 1 diabetes and a lot more going on.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 807 of the Juicebox Podcast.

I didn't understand when I began recording this episode that it would be an after dark. But I've, I've given it that distinction because the person we're going to be speaking with today suffered a number of different abuses throughout their life in the past and they get spoken about. And I like to put stories like that in the after dark category so people know what to expect. So in a few minutes, we're going to speak with Kelly, she's the mother of a few children, one of them has type one diabetes, a bunch of autoimmune stuff in her family, and some different issues with her son, and herself. You're going to hear about it all as the conversation unfolds. While you're listening. 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. If you have type one diabetes, or are the caregiver of someone with type one and are a US resident, please head over to t one D exchange.org. Forward slash juicebox. Join the registry complete the survey it will not take long and once you've done that you're helping to move type one diabetes research forward right from the comfort of your home. This show is sponsored today by the glucagon that my daughter carries G voc hypo penne Find out more at G voc glucagon.com. Forward slash juicebox. today's podcast is also sponsored by touched by type one. They're a great organization helping people with type one diabetes, check them out touched by type one.org or find them on Facebook and Instagram. And lastly today but certainly not least, this episode of The Juicebox Podcast is sponsored by Ian pen from Medtronic diabetes. If you're looking for a way to give yourself insulin that's not through a pump, but you'd like some of the features that pumps offer. You want to find the in pen from Medtronic diabetes at in pen today.com

Kelly 2:21
My name is Kelly. I am a neurodivergent mom of a neuro divergent child who is also a type one. And I also have two other kids like Kelly

Scott Benner 2:37
and you've got me googling immediately. That's fine. I feel like neuro divergent is a new fancy word for something I already know. Yes, it is right? Yes, neuro diversity. Neuro divergence. Neural variants refers to variations in human brain and cognition for instance in sociability learning attention, mood and other mental fluctuation or functions fluctuations, function sorry. In the case of you, how does that how does that

Kelly 3:13
so I have diagnosed ADHD and dyslexia and I'm currently looking into the process to see if I may be slightly autistic.

Scott Benner 3:25
Okay, but what what about you made you want to look into that?

Kelly 3:33
My social awkwardness and my inability to take social cues from people like I just am horrible at reading facial and body cues. Okay. And I tend to be I am overly friendly. And I I am awkward, extremely awkward. Is that,

Scott Benner 3:57
oh, Kelly, by the way, when we were talking before we recorded you were so boisterous and now you're like demure which is fine, but I might ask you to put the mic back a little bit to your mouth.

Kelly 4:08
Okay, well, I think I was running around a little bit. Because with with my neuro divergence, I had written you down for the 30th and then all of a sudden, I got like, a little thing on my phone. And I was like, oh, it's today.

Scott Benner 4:27
Oops. So how old are you?

Kelly 4:30
I am 48 Okay, this October.

Scott Benner 4:32
It is anything about your social awkwardness, been an impediment? Airlife.

Kelly 4:41
Um, relationship wise, extremely. I don't have I don't really manage to maintain relationships at all. And that can be ADHD. But I also tend to just, I just can't deal with people's stuff. It's draining and too hard. Okay? It's too hard for me.

Scott Benner 5:08
So one thing at a time, you can't deal you can't seem to hold relationships together. But you're married. Do you mean like, like friendly relationships? Yeah. Okay, friends, is that because people back away from you eventually, or you get overwhelmed by them and back away from them?

Kelly 5:25
I believe there's something called a I don't know, if I say it, right. I lose my words a lot. That's the ADHD. Well, there's, there's this issue where you're, you do a lot of masking. And so you're, you read people, and then you try to pretend to be what they want, or you take take up. You take a behaviors that you think somebody else likes, you know, and over time, when you get really comfortable, it kind of falls away. And people aren't cool with that.

Scott Benner 6:03
And then you're come off as harsh or what how do you think you come off the people when you stop masking?

Kelly 6:10
I had somebody tell me, I was frigid. Okay. And the dating? No, I was a business relationship. Okay. I used to work with people. So so it was like, they liked me, like me, like me, and then like, four to six months later, I'm too analytical. I'm to book books and numbers, and I have no interpersonal relationships. I have just no ability to relate to people. That's an it's very lonely.

Scott Benner 6:47
Okay. What Why is it worked with your husband? How long have you been married?

Kelly 6:51
I've been married 15 years. Um, because I never ever messed with him. I don't think I've just never been anybody who other than who I am.

Scott Benner 7:05
Why do you think you didn't do that? Oh, I can tell you that story. Well, if it's a story, then perfect.

Kelly 7:12
It's a good story. I, I do have friends that I managed to keep who understand me. But I went on. I had an employee told me that she thought I needed to get out. And she was my friend. And so she said, Hey, meet me out here for dinner. You look terrible. You haven't been taking care of yourself. And I had been sick. And so I went to meet her. And then she tells me halfway on my way that by the way, I'm on a blind date with this guy. And you're just my, forgive me. My safety net? Because who knows he might be a murderer.

Scott Benner 7:55
Well, then, if listen, if he isn't a murderer, then you who have not been taking care of yourself and have been sick will be a perfect sidekick. For this scenario. You'll just I

Kelly 8:04
know, right? Well, here's the thing. I'm a six foot tall redhead, so I tend to intimidate a lot of people.

Scott Benner 8:15
I might look sickly sir, but I can fight.

Kelly 8:18
Exactly. So it was that kind of thing. And in the process of sitting there at a bar, getting drinks and stuff. My friend told her date that she was sitting with her six foot tall redheaded friend. And then the date and I got along really well. Okay, I see. And seven days later, he asked me to marry him. And two months later, we were married.

Scott Benner 8:47
That was 15 years ago. Yeah, for 28 around there.

Kelly 8:55
When I met him yet, Was she upset?

Scott Benner 9:00
Because it's possible. Kelly, you're confusing neuro divergence for stealing people's men.

Kelly 9:08
That can be a little bit of a problem too. But I don't want to, you know, yank my own train on that one.

Scott Benner 9:15
I think it's blow my own horn. But I got Well, you're

Kelly 9:18
right. Anyway, you're right. See, ADHD is fun. She, it commenced like this. I told him, he was a player and he took my phone and called his phone from it at the dinner while she went away to do something. And I said, you're on a date with my friend. I'm sorry, this is a bad idea. And then the next day he called me at my job because he knew where we both worked. And he's like, it's okay with her. I talked to her. And I was like, really? That's really bold. And then she called me and said, Go out with it. I'm okay. still weird.

Scott Benner 10:06
How do you? How do you get proposed to in seven days?

Kelly 10:12
I don't know. I don't know. I wouldn't even kiss him for four.

Scott Benner 10:17
I think you know, and you don't want to say on a podcast. What do you think of that? It's okay. No, I

Kelly 10:22
swear to you. I think it has everything to do with us just spending a lot of time talking. And I wouldn't kiss him. I wouldn't you know, do anything with him because I just have to add this to add this huge, like cold sore up

Scott Benner 10:38
my mouth. During

Kelly 10:42
cold sore. Oh, my mouth. I looked like I was dying. I had pneumonia. I wasn't just sick. I was sick.

Scott Benner 10:50
All right, Kelly. I gotta figure this out here. And forgive me for being blunt. Do you have great cans? What's going on? Exactly. Something do Oh, do you? Okay.

Kelly 10:58
I do. I am. I'm not just a six foot tall Red House. I was a really hot six foot tall. I modeled in the 80s and 90s. So, okay, I I'm not I'm very pretty.

Scott Benner 11:12
I see what happened. Okay, now. I mean, I'm trying to figure out you're not touching. You're not kissing him. You're, you're just talking and then you're getting married. And I'm like, I don't understand what's happening here. But I've seen

Kelly 11:21
with a lot of cuddling. Alright, that's about it.

Scott Benner 11:25
What kind of a player cuddles

Kelly 11:29
the one who realizes the girl he's out with has a fever and she can't keep standing.

Scott Benner 11:35
That's very kind. Oh, okay. All right. So yes, very kind. So you, but you didn't, you know, there were no errors about anything. You didn't pretend to be somebody different or do what he likes or something like that. Which by the way, it's I don't I know nothing about this world. But there's a there's half of my brain here that saying if masking who you are on a date is autism than every girl I've ever met as autistic.

Kelly 12:05
Masking is ADHD and autism, excuse

Scott Benner 12:08
me, if it's anything is what, you know what I mean? Like if it's like, I just thought people put their best foot forward generally, like you're telling a story that I've heard before told like this. I met a guy. I pretended a lot. You know, like what he liked. Eventually it came out that I didn't care about basketball. And we broke up and then one day I was out my friend not looking to date acting like myself, and he liked me. Pretty much right, but that's ADHD.

Kelly 12:36
I have ADHD. Yeah.

Scott Benner 12:37
Okay. But I'm not saying you don't have ADHD. I'm saying that's a function of it.

Kelly 12:43
Well, ADHD, a lot of times you're well, for me, you have spatial issues. So my clumsiness has a lot to do with my spatial issues. I could just walk into a wall and I, it's like, I don't know how that wall got there.

Scott Benner 12:58
So I did it. I used to walk into corners. Like when I turned corners, going from room to room, I would always brush into the edge of the wall. Yeah, that's a special issue. Yeah. And then one day, I said to myself, hey, stop doing that. And I've never done it since. Like, literally, it was the thing, like I would close cut the walls, my turns, and I would always like be bumping my shoulder on walls. And one day, I remember stopping myself and saying, This is ridiculous. Don't do this anymore. And I don't think it's happened to me in 15. So I don't know, like, I'm fascinated by this because you're you and anyone else who has ADHD or whatever. Partly describes. I mean, I don't know, like, like losing a word. Give me more examples of what ADHD is, that's what I need.

Kelly 13:47
Well, there's all different people for you from people.

Scott Benner 13:50
Have you ever heard me you? Yeah, I will

Kelly 13:53
get into a conversation with somebody and I will veer off into another direction and tell a whole other story with a severe like when I'm telling the story. My emotions build up. Yeah, real easy. And then I get emotional and like React. And I'm, I tend to be and then I'll lose my words when I'm trying to when I get flustered. Yeah, with names. I'm horrible with names, but I know that people's faces, and I can't, I have trouble. I'll reread the same sentence over and over and over and over again, on something and if I'm not interested in it, I just can't even it won't come in my head. I can't. It's like, it's like, I'm speaking. I'm reading Latin. You know, and I just, I can't understand it. It's like a foreign language all of a sudden, are you done?

Scott Benner 14:45
I'm sorry. I just want to check to make sure you're okay. If we keep talking about this, because I don't. I'm not I'm going to come off. Like I'm minimizing what you're saying, but I'm not I'm just trying to have a conversation around it. You're describing me. I don't have ADHD How do you know? Why would it matter? It's my question, I guess I'm 50 out of the house, I have kids, everybody's happy, they're safe, we pay the bills. And once in a while I look somebody in the face and don't remember their name. And I tell stories, and I can get emotional while I'm talking. Is that a problem?

Kelly 15:18
It's not a problem. But it's a problem when you're in an environment with a lot of people and they don't accept you.

Scott Benner 15:26
Yeah, I mean, I understand that. I really do. But what's the difference between that? I'm going to, you're going to help me if you can, you're going to explain things to me. I don't understand. What's the difference between that? And me being? I don't know. I'm just going to try to make something random up. Like, what if I was just a person who just talks about basketball, I have no other real interests. I love basketball. So much basketball is what I talk about, I go to my job. And every time I'm in a social setting, I bring up basketball. Turns out, nobody in the office likes basketball. And because of that, they don't talk to me as much. What's the difference?

Kelly 16:04
For you? You don't realize they don't like it? Who? Like,

Scott Benner 16:07
here's the question, Who cares? If they don't like basketball? I love basketball.

Kelly 16:12
See, that? Who cares thing, right? That happens over time, doesn't it?

Scott Benner 16:18
No, I don't I've been like this my whole life. I am very fairly comfortable with who I am. And I have met people who really liked me kind of like me and don't like me. And I tend not to talk to the people who don't like me. But that's never once made me think that I have a social disorder. Well, so I'm trying to figure out what makes what made it a problem for you enough that you had to say to yourself, I need to go speak to somebody to find out what's happening, because I'm having that much trouble.

Kelly 16:46
Like that's diagnosed as a six year old. Okay, in the what,

Scott Benner 16:51
I'm sorry, I couldn't communicate,

Kelly 16:53
I wasn't taking up speech. I wasn't. I didn't have the same skills other children did. And I was different. And I needed somebody to help me do the things that other people did. Thank you. Stop me.

Scott Benner 17:09
I'm sorry, I had to be off, I want to understand, thank you, I'm sorry, good.

Kelly 17:12
For me, I had to take Ritalin from the age of I think I six to I took it till I was 14, to be able to even focus on anything because somebody would come talk to me, and they'd be talking about one thing, and then all of a sudden, my mind would go somewhere else, and I'd bring up something else. And they'd be like, are you listening to me? Or if they tell me, you know, I had a really rough day, and my boss really sucked. And then I would tell them? Well, I've been through that. And I would give them a story. And they thought that I was narcissistic, and trying to hijack the conversation, when I was just trying to empathize with them. Because one of the ways people with AD HD and autism tend to tell their own personal story to say, Hey, I'm with you. I understand what you're saying. Right? It's not, it's the only way we know how to interact. And for other people, they either think you're a narcissist, or that you were not right in the head.

Scott Benner 18:24
What if they're the narcissist? What if they're terrible? I know some? No, first of all, but listen, if someone comes up to you, this whole podcast, by the way, is people telling me stories, me relating things that I've gone through back to them, right. And so in this setting, that's expected. It's a conversation. I think, in life, it's expected. It's also like, if someone comes up to you and says, Oh, my gosh, this thing happened to me. And I'm terribly upset by it. And I can't dig myself out of this hole. And you're listening to them? And think, Well, I would like to help them. I've been through something similar. Let me explain it to them, like how it happened to me. And then maybe they'll grab some commonality from it. Or maybe I've made a decision they haven't made that they'll find valuable, and you tell them your story back if that person was then to say, I can't believe you're trying to make this about you. I think it's possible they have the problem not you.

Kelly 19:25
It's just how it's every conversation you have. So

Scott Benner 19:29
so so no matter what happens if if so if I came up to you, and I was like, I love this Yellowstone, it's on the Paramount plus Have you seen it? And you instead of going I have not seen Yellowstone or I have seen Yellowstone and I enjoyed it. You will say I watch a TV show to that I really like and then tell them about it. Is that the vibe? Pretty much okay. All right. You're really helping me understand this because because I think people say vague things when they're describing complex issues, and we never get down to the real root isn't like, like the stuff that you told me in the beginning? I was like, Okay, these are the things I've heard people say before. But were like, how does it really, really impact you? Like, that's, that's what I'm, I'm very pleased that you're able to explain to me. So thank you very much. So six years old, although may I say you grew up right during the Ritalin revolution, the Ritalin revolution. So you could have grown up at a different time and somebody wouldn't have given you Ritalin? Correct. Did it slow you down?

Kelly 20:30
Oh, my God. So taking Ritalin for me was like, taking a pill that gave me constant tiredness and depression.

Scott Benner 20:39
But you could have but you didn't change the subject in a in a conversation anymore as a six year old?

Kelly 20:44
No, I would still change the subject in the conversation. But I wouldn't sit there and have a million different topics going on in my head. Like right now I'm staring at my microwave wondering why is that metal over there? This silver and the other one is that silver and it's just popping in my head right now while I'm talking to you and I can't get it to leave me alone.

Scott Benner 21:05
Okay, that's interesting. Why do you think there are two different colors of silver what's occurring to you right now.

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Kelly 24:01
It's, it's like more bent, it's bent as the the light hits it. And and the the silver on the stove is more flat. And they both were put in at the same time. And they're the same company and I don't understand.

Scott Benner 24:13
Right. So one of them's reflecting the light differently. You think?

Kelly 24:18
Yeah, there's that? Yeah. But it's the same company. And it just looks completely different. And it makes me think that one has a different level. I don't know maybe a plastic polymer in it.

Scott Benner 24:30
Yeah, right. Maybe they were just saving money somewhere.

Kelly 24:34
But I'll go off and I'll go look that up and try to figure it out. Well, okay, and that's that's ADHD, all of a sudden, a whole other topic comes into your head, you lose everything you were discussing, and you can't get away from it. So then you'll do something called hyper focusing. And you'll take an interest in something which is extremely helpful when you're learning about your child.

Scott Benner 24:59
You Interesting. And then but and you find this a problem like, I don't know what your day is like or

Kelly 25:04
hyper focusing is not a problem for me, okay? Because then it's all all all that. But when I'm all all that my husband has said you have to stop. You have to stop. There's other things to do. We have three kids, please. You know, you need to focus on other things.

Scott Benner 25:23
And are you able to do that when he brings it up to you?

Kelly 25:27
Yes. Okay, I am able to do that. It's just

Scott Benner 25:32
is it upsetting when somebody tries to break you away from your hyper focused activity?

Kelly 25:39
can be frustrating,

Scott Benner 25:41
frustrating. Okay. All right. I understand. Thank you, Kelly. That was really well done. I appreciate I know, that probably wasn't easy to do. And I appreciate you digging through it with me. So you have three kids. They are how old?

Kelly 26:02
1311 and

Scott Benner 26:04
813 11 and eight and which one of them has type one?

Kelly 26:08
My 11 year old son love your old son. Okay,

Scott Benner 26:12
how long ago was he diagnosed?

Kelly 26:16
So I go back and forth. I can't remember the exact year but my father in law told me it was five years ago, January 17.

Scott Benner 26:26
So he was six.

Kelly 26:30
And that's what I can't remember. I for some reason, can't remember that. That much.

Scott Benner 26:37
You know how I do Arden's diagnosis they she was diagnosed when she was two she'd only been to for a month. And she was born in 2004. So Arden was diagnosed in 2006. That's how I ended up doing it. Because if you just had what years are undiagnosed, I'd be like, 2006, like I ate come slower.

Kelly 26:56
So I'm basing my little one she was two and a couple months. So yeah, it was two. I think it was

Scott Benner 27:04
cool. Okay, so about six years old. Were there any other autoimmune issues in your family line?

Kelly 27:12
Yes. Okay. Goodness. Yes. Who and What? My mom has severe rheumatoid arthritis. My sister has Hashimotos my other sister has ankylosing spondylitis. My brother has rheumatoid arthritis. I don't know about my little brother. But yeah, and then. Who else? Oh, my mom is bipolar. I don't know. We go back. I listened to a lot about that.

Scott Benner 27:48
Yeah, I mean, that's all actually all very interesting. So this is it. So there's you said your younger brother. I don't know. Because you don't know your younger brother just because you don't talk about it.

Kelly 27:58
We he stayed home when I left. And so I don't really have the best relationship. Gotcha home.

Scott Benner 28:07
Should we dig? Should we dig through that a little bit before we get to your son? Or what do you think?

Kelly 28:13
You can absolutely go ahead because I was gonna, it kinda like everything comes back to trauma. So

Scott Benner 28:24
well, how old were you when you started experiencing that at home?

Kelly 28:29
trauma. I don't know. I remember being three years old. And my mom was locked out of the house and trying to open the door. And I couldn't get the door open. And her screaming really nasty things at me. And I I realized she left me home when she went to the store.

Scott Benner 28:55
Okay, so sleep. So you were a three year old asleep. Your mom went to the store came home and then couldn't talk you through unlocking the door so she yelled at you. Okay, Mom was bipolar. You're saying

Kelly 29:08
she's she was bipolar and borderline personality disorder. Okay. That's a lot, which I only realize I learned recently from a social worker

Scott Benner 29:20
by describing her to somebody who was able to say no,

Kelly 29:23
no, somebody who interacted with her later in her life. After she was I don't know, that's very complicated story. It doesn't

Scott Benner 29:33
matter. But you figured it out somehow. Okay. Your father, what was he in the situation?

Kelly 29:43
He was a nice man who went to work at like 4am and came home at 10pm. And he just couldn't put up with his wife and wouldn't give her the finances she needed because she was irresponsible with money. And so he just avoided her like

Scott Benner 30:03
she was the plague. Okay, but didn't leave her.

Kelly 30:07
He didn't leave her until she forced the issue.

Scott Benner 30:11
Gotcha. How many kids now? Did they have? Five? Where are you in that line? For? You're the fourth. Yep. Okay. What so was the the wrath of her mostly yelling? Or was it other stuff?

Kelly 30:30
It depended on which child it was. My mom used to like to humiliate my, just above me sister. She would just humiliate her and hit her in the most egregious ways, like, and she she was unhappy with how my sister cleaned the bathroom. So at two o'clock in the morning, she pulled her out of her bed to clean it again.

Scott Benner 30:53
Yeah, that's, that sounds pretty classic, actually, for what was going on with your mom. Your mom was not getting any treatment. I imagine what she treated with alcohol or drugs. Do you think

Kelly 31:02
so? Because my mom had severe. Oh, god bless the word. What does that rheumatoid arthritis. She was doing a lot of experimental things that other doctors had given her. And she was doing like, I mean, I remember she did a study on the MRI, like she volunteered to be one of the first people to lay in there and get tested on how to use an MRI on a person. And so she was always like a guinea pig trying to find a way to get I mean, like when I say my mom was severely disabled, her hands were just so bent and swollen and, and her face and she was on prednisone all the time. 24/7 which makes you aggressive, and irritable. She was on so many drugs, methotrexate. She like seven different drugs. But I don't believe any of them dealt with her bipolar. Or I didn't at that time. I don't. I don't even think she completely knew she was bipolar. And if so she used to, like I remember when I was like three or four. She just went away for three months. And didn't come back. Yeah. And we'd go visit her in a hospital. Okay. And then it happened again, when I was like six. And after she had my brother, I was six. Yeah. And it was just a lot of my father saying that one's not she doesn't have ADHD. That's not real. And my mom, you, you need to get better. And what's wrong with you? It's not real.

Scott Benner 32:44
So your your dad would say that your mom's problems weren't real or that the kids problems weren't real, or everybody, all of us anything. All of us? He probably didn't have the bandwidth to talk about. One more problem, I would imagine. Yeah.

Kelly 32:57
No, he did not. And he didn't only till the more recent years, even acknowledged stuff like that.

Scott Benner 33:04
Yeah. Do you still speak with him? My father passed away last year. Oh, I'm sorry. Prior to that, were you in touch? Yes. Yeah. But with your mom? No, no. Okay. My mom

Kelly 33:18
passed away in 2015. And I really hadn't talked to her since my grandmother had passed away. I think I was 26 at the time when my grandmother passed away. And the time before that, I was 16.

Scott Benner 33:33
Oh, my gosh. So you left at 16.

Kelly 33:37
I was I tried to leave on my own. Because my mom was just being erratic. She broke up with my boyfriend for me. She quit my job for me, which I had a job and I was buying groceries for our house. And that meant there was no food. And so that was a problem. Plus, that meant I couldn't go do anything. And she was always screaming your father doesn't give me enough money. I don't have any money, do anything. I have nothing. He's just trying to make me die here. It was. It was delusional, delusional, delusional, all the time. It was and so I took all my stuff. One day, after I walked home from the job, I thought I was going to I had worked in a video store. And I walked home. And that day, I took all my stuff. I got garbage bags, filled it up and I live. I was on the third floor of the house. I dropped them out the window and then I went to take the garbage out and I asked my neighbor to let me put them in his driveway, which he did, because he was kind and he realized my mother was unwell. And then I told her I would like to call my father And then I wanted to leave, because I couldn't take it anymore. Yeah. And she cried and yelled at me and said it. This is not working. You're You're kidding me. This is silly. And I was like, you're taking everything away from me that we need. And so she's like, Well, why don't you just go to your friend's house. So she drives me to my my friend's house. Which was really her friends, her, a girl who I was allowed to spend time with. I wasn't allowed to have any relationships with anybody, by the way. But then, it was all about control for my mom, let me tell you, and I went there, and she wouldn't let me take the bags out of a car. And she then said, I they had me go to school. The next day, I went, I went to a Catholic school, just so you know, a private school. And that afternoon, the police came and told me I had to go on a different bus. And I had to go to my father's house. Except I have nothing but my uniform on. That's all I own. Yeah. So everything was to take everything away from me. Well, if she's gonna do this, I'm gonna go through everything. She hasn't made sure she gets nothing.

Scott Benner 36:20
of value. Yeah, no, I've heard this story before from other people. I know exactly what you're talking about. Yeah, yeah. So did you eventually make it to your father or no?

Kelly 36:32
Well, so my dad was dating some lady and living with her at that point, and they were gonna get married. And so I went to my grandmother's, and I got the top bunk, and a small bedroom. And my big brother had just come home from college, and he had graduated. And so he had the bottom bunk, although he'll say he never shared a room with me. But we did. And he, I essentially got like a pile behind the bed. And I had to kind of start new except a week later, and my mom said that my trial was over. If I liked what I was dealing with, then I can come get my stuff. And so I had a friend from work, take me to my house, and my mother then wouldn't let me in the house called me nasty whore, and said that, I don't deserve any chances. And so she gave me bags of things that weren't mine.

Scott Benner 37:33
Ah. Let's Catholicism is really working for everybody.

Kelly 37:38
I know, right?

Scott Benner 37:41
You guys Irish.

Kelly 37:44
We are a whole bunch of things. But she's Irish and I, Irish and English. I don't know. I've never completely understood my grandmother's background. Her mother. She, she I as far as she never told us about it really completely. And it's taken a couple of years of digging, but I believe she was English.

Scott Benner 38:04
Was her mother like this? No, no,

Kelly 38:08
her mother was like the life of the party. She was a woman who married divorced a man when her daughter was two in the 40s and 50s. She was a real head turner, by the way, I think I think I looked like her. Okay. And she had another husband, who was like 30 years older than her. And he was like a popular restaurant tour in New Jersey.

Scott Benner 38:39
Interesting. That's really

Kelly 38:41
New Brunswick area.

Scott Benner 38:43
Any of your brothers or sisters have any signs of bipolar?

Kelly 38:49
No. Well, maybe my little brother. I don't know. You know?

Scott Benner 38:54
Sure. Right. Right. Yeah. Okay. She's so Kelly. You expect and probably through therapy and talking to people who know better about stuff like this than you and I, that some of your issues come from growing up in a scenario like the one you just described? Correct. Okay. And even though you were there for just the first 16 years, once you left, I mean, what happened between 16 and 18? Just lived your grandmother's while you finished up school?

Kelly 39:28
No. So it really I had tried to keep that job where the person had helped me and I really loved working there. But it meant like riding my bike 13 miles. And so I started living at my boyfriend's house a little bit and sleep like I would, I would go home to my grandmother's house like Monday night and then on. If I had to work I would maybe go Back to my boyfriend's house on Thursdays and then I would sleep at his house and then, you know, it was a bunch of stuff that went on with me kind of hanging out with friends and staying at friends houses rather than at my grandmother's house because my grandmother was old. And it was, I felt guilty, because I felt like I was taking advantage of an old lady.

Scott Benner 40:25
Okay. I understand. So did you go to college then?

Kelly 40:31
I did, but I took a year off. So

Scott Benner 40:34
between 18 and 19, you took a year off? And then but you did go and complete a column well,

Kelly 40:39
okay, I did not complete college. I went to school. I was 19 When I graduated from high school, because I was older because I stayed back in like second grade or something. And I was I was still in the private school because it was in the divorce decree. My father had prepaid for everything. So I still going to the private school I was going to, and then senior year, I got pregnant. And you know, we did not continue that. I understand them. Okay.

Scott Benner 41:26
Yeah, no, I understand. I started doing the math when you said it. So okay. And then

Kelly 41:31
I couldn't bear to go to school or do anything. All I did was, I kept my job. My boyfriend went off to a university that was far away. And his mom was like, Oh, you can live with me. It's okay. I love you so much. And I was just like, I can't live with you. I can't even stand to be here.

Scott Benner 41:50
Right? What part of the General General part of the country did you grow up in?

Kelly 41:55
I'm from New Jersey. You're from Jersey.

Scott Benner 41:57
Okay. This is a hell of a story, Kelly. It really is something else? And is there a moment ever in your 20s? Where you feel like, I've, I've gotten away from this. And then No, you've never felt clear of it. So

Kelly 42:17
I just, I, like a lot of people who have learning disabilities or disabilities in general, they tend to gravitate to trying to understand people. And sometimes that means making bad decisions, especially when you don't understand how to interact with people so well. And then I ended up with a man who was horrible who abused me. I'm sorry. It was like, so before I left my mom, she did start using drugs and alcohol. And she was doctor shopping, is what I think she was doing. But because she couldn't afford the drug she needed for her. Rheumatoid arthritis. So she was I mean, literally, and this is when I could do it. She she'd pull up in front of the local liquor store, and she'd say, here, bring this note in and get a 24 pack. And that 24 pack was every day.

Scott Benner 43:11
Okay. She was drinking while she was drinking that much to get through. Yeah, yep. And then, do you think people, younger people even understand the concept of your parents sending you somewhere with a note? Like my, my wife, my wife used to get sent to buy cigarettes with a note?

Kelly 43:30
Oh, but she would she would smoke a pack a day, too. Yeah. So it was a lot of smoking, a lot of drinking. And then

after I'd moved out, and I actually had cried to my dad to go to the court to try to save my little brother. And he's just said, I just don't have the money to deal with your mom. And I was like, Oh, okay. Because we're all disposable dad. That's great. So my dad had lived it. So in between there, I had moved in with my dad and his new wife. And she was worse than my mom.

Scott Benner 44:11
Dad could pick up I know,

Kelly 44:13
I know. But then you think about this. That was how I picked relationships. And I never really had a really good healthy relationship because that that relationship with the boyfriend she made me break up. That was actually a really nice relationship.

Scott Benner 44:30
That's probably why she made you stop doing it.

Kelly 44:34
Well, yeah, and she didn't know a lot of stuff. And she, she made this story up. She told me, I heard him talking to his friend in the backyard. He's gonna try to have sex with you. You're not gonna have sex. Let me tell you. I'm going to stop it. And I was like, Oh, okay.

Scott Benner 44:54
How old were you at that point?

Kelly 44:56
Um, I was 16

Scott Benner 44:59
Did you already have so So the kid, no, no. Okay. Well, he was probably going to try to have sex with you. But that

Kelly 45:06
wasn't. I was trying to do that with him. And he told me no.

Scott Benner 45:14
Okay. She did. She didn't

Kelly 45:17
know that.

Scott Benner 45:19
She No, yeah, no, I'm saying she obviously made up the story, but it was, it was a reasonable guess is what I'm saying. First, for a 16 year old boy to be thinking about that. Correct? What behind? Just generally, I don't need you to go very deeply. But relationship in your 20s where you said it was abusive? Was that physical or mental or? Both? Both? How long were you?

Kelly 45:48
In and out for 10 years. Every time I'd get out, he'd like, come back to my door. I mean, I had, and he was always like, Oh, he was, I mean, the first time he hit me. So I actually went off to, I went to the community college, and then I had gone down to New Orleans to live. And then I was going to go into two lane. And then I had been assaulted by a roommate. So I left

Scott Benner 46:28
at Tulane.

Kelly 46:31
We were in a house. We weren't, like, Okay, I

Scott Benner 46:33
say, I hadn't

Kelly 46:35
even really started school yet.

Scott Benner 46:38
And this was a sexual assault.

Kelly 46:41
No, no, it was a girl. And she was my friend.

Scott Benner 46:47
And she just hate like, hate you that kind of thing. You don't have to tell me. Yeah.

Kelly 46:54
Okay. Um, it started months earlier over a guy. And I had, I was in college, and I had a friend. And this friend one day goes, Hey, you want to go to a Matthew sweet concert? And I'm like, Yeah, I want to go to a Matthew sweet concert. And so I'm like, okay, oh, my God. He asked me out, like, this is awesome. And I get in the car. And there's this other guy in the backseat. And I get in the front seat. And he's like, Hey, do you mind getting in the backseat? And I'm like, oh, yeah, no problem. And then we stop at somebody else's house. And we pick up this other girl who then proceeds to stick her tongue down his throat. And I'm like, Oh, I guess this isn't a date. Oh, I'm seeing that I'm supposed to be with the other guy. Oh, okay. I wasn't used to that. And then we were very good friends for like two years, and we were just only ever friends. And then one day I said to him, I said, I don't understand why you never, ever wanted to go out with me. And he said, I did. I asked you out. But you said that you wanted to stay single. And I said, Yeah, like not get married. And he's like, Well, I perceived you wanted to be single, single. And I was just like, great. And then he kissed me. And then my friend got upset because she apparently had started to become attracted to him, which she always knew that I was attracted to him. And it was like, why? So she said, you either stop it, or I'm not your friend anymore. And so I stopped it. Kellyanne, I told my guy friend, sorry.

Scott Benner 48:57
Everything about your story is making me not about you, by the way, just in general, because I live in the world too. All I can think is like, is everyone out of their mind? Like everyone? You do not I mean, just in different and spectacle spectacularly odd ways. Like between, you know, interpersonal relationships and dating and, you know, parenting and nobody can like, like, no one in your life can come close to making a good decision. It's, it's fantastic. Like you've actually moved so far away from how you grew up. It's, it's, it's laudable, honestly, do you know what I mean? Like it's it's fascinating that you were able to get to where you are right now. Yes, if you ever stopped to just kind of celebrate that.

Kelly 49:51
I do. I do. celebrate that. Good.

Scott Benner 49:54
Good. I mean, it's like you climbed out of six different pits. It feels like

Kelly 50:01
I've, it feels like that to me too. But sometimes people say that your stories are so outrageous that nobody will believe them.

Scott Benner 50:09
No, listen, I have no reason not to believe you. And it makes sense if you kind of reverse engineer it. If though if you at six years old, which by the way, Listen, I'm not a doctor, I wasn't a doctor in the 70s. I don't know what I'm talking about. But I've seen people put on Ritalin and it wasn't good for them. And no, I could stand here and make a pretty solid argument that a six year old shouldn't be able to keep a single train of thought while talking to a bipolar a woman and her husband who made six babies with her five babies or whatever. Like, like, you know, it's, it's not like you were, it's not like you were being raised by the Queen Mother. And and you you don't I'm saying like there was a lot of craziness from your mom. Like, why are we? I mean, if I could put myself back in that moment, I don't think I would put your mother in charge of making a decision about whether or not to medicate you at six years old. Do you see what I'm saying? And and so, now you're in it, right? Well, listen, you were in it the minute they had you like, right, so you're in their hell. And now you're being brought up with their ideas, you're being brought up with their, you know, limited ability to parent. And then they do it to more people by you know, they have kids, and then you guys live in a bubble where this is happening, your father gets more and more this illusion to move away your mom's slides further and further into her mental illnesses, which makes your interactions worse and worse and worse. And then it's no doubt that it's just not a surprise, that you would continue to end up with people like this. It's probably what you gravitate towards, even though you don't realize you're gravitating towards it. Like there were probably kids at Tulane that weren't going to hit you. But how the hell would you find them? Because that's not what you think of as the world. Does that make sense? Yeah, yeah. It just feels like, you know, this thing breeds more of this thing. And then when you try to leave it, you find more people like that. And then when you actually find people who aren't like that, that's probably when you don't deal well with other people.

Kelly 52:24
Well, the girlfriend, the girlfriend that assaulted me, she was like, my best friend of like, three years. And, and she, she wasn't I ride or die. Yeah. And I was living in her house with her a lot. Like, I would come sleep with her at her house, not like sleep with her. Not like that. But like, roll out a bed, that bed thing. And I'd sleep next to her bed. And it was. And so like, when it came to her the guy I was gonna choose her because she's my ride or die. And she was like, the only girl ride or die that I had ever had that kind of liked me.

Scott Benner 53:10
And maybe that's all I'm wondering is if you didn't grow up like this, in this scenario, if when you got to college, your ride or die would have been a different person. Probably yeah. And like, what is it about? Like, when you stop and think about it, it doesn't. It doesn't shock me that you were very good friends with a person who eventually could come to strike another person. Because I'm guessing that subconsciously, we're all drawn to people that we recognize. Somehow, hey, you know what I mean? Even if it's not like, even if in your in your like, functioning like conscious mind, you're like, look, that's how my mom is. I don't want to be around people like my mom. Like, even if you know that. When you start making small, subconscious decisions about people and things. I'm assuming you choose stuff that you're more comfortable with, even though that comfort isn't good for you.

Kelly 54:11
When I look back, now, I can see that but in the moment, I didn't see it. Sure. I couldn't see it. And when when I left her she, she they the roommates all voted me out. I mean, I'm the one that got strangled, and black guide, and I got voted out of the house because they said I cause too much drama. When I didn't think I caused any drama. Actually, I just kind of went to work and came home and was saving to try to pay for my first semester. Yeah. And so yeah, that wasn't working. And so I never got to do that. And then I came home and she called me lots of names and said that I would never, ever do anything successful and a bunch of other things that she said to me so that when I came home there's this guy I was just looking for somebody to pick on, I guess.

Scott Benner 55:05
And you probably look apart at this point after having gone through these things so many times, like, Oh, I was

Kelly 55:11
so skinny. So I was I, you know, I can look back at old pictures and be like, God, I was really pretty. What was I thinking I was so low on myself. I never. My mom used to call me. Uh, she called me a fat whore.

Scott Benner 55:26
Oh, all the time. That's sweet. And what I was thinking was is that predators can recognize prey. And you've been preyed on by so many people, that it probably, it probably exudes from you, and you don't even realize it. And so they're like, Okay, well, this one will be easy for me to manipulate or whatever it is. They're thinking of doing? Probably, yeah. Oh, that's terrible. It really is.

Kelly 55:54
I should have just stopped it. I don't. I didn't stop it. The first so I had moved back in with my grandmother. And she was she I mean, she's in her 90s. Okay. Wow. And we had it was just a couple of weeks after I moved back. So it was probably like, February. And he was doing stuff with somebody else. And I was just like, oh, well, this is not like, well, I didn't know that. Well. Oh, dang. And I dropped. I was drinking a wineglass on my front porch. And I was 21 at this point. And I dropped it. And he said, You, you threw that at me. You. You purposely tried to hurt me. And I'm standing I was like, No, I didn't I just I'm just so I'm a klutz, I'm just a big klutz, and I didn't, you know, you're just angry at me. And then he, he's, he, like, back slapped me. And then I ran in my front door. And he knocked me down and, and he choked me to like, I was unconscious. And I woke up in my own bed with him behind me, making sure I was okay. telling me how much he loved me and all that stuff. And I would never do that. And, you know, thank God, your grandmother didn't come out of her room. Oh, my God. He was like two in the morning. And it was just always from there on end. Because my sister lived with me at this time, too. And she was at one of the universities locally. And he would just say he could take them both both out, if I ever told anybody.

Scott Benner 57:46
So he was willing to threaten to kill people around you if you talked about what happened. But he had to wait for something like the wineglass to fall to hit you, which hitting you is what he wanted to do. Like for. It's got nothing to do with you, Kelly. I don't imagine you don't know that now, years later. But like, he's got his own significant issue. He's just waiting for anything. That's an excuse for him to lash out the way he wants to lash out.

Kelly 58:17
Oh, it's just, it was constant after that. And that was like, he used to get upset that I wouldn't pick him up. And I was like, I work too, you know, and that's my car. He didn't have a car at the time. And he's like, you're supposed to pick me up at this time and do this. And I was like, Okay. It just, it was just easier to go along, than have to put up a fight and have him threaten people in my life. And so you know, I did it. And then one day, I thought, hey, let me do something because I'm having this relationship and it's sick, I guess. And I'm trying to, you know, love this person, I guess, because this is what I'm stuck with you. Everybody in the world just like this. Apparently, my view

Scott Benner 58:58
is now starting to feel for sure.

Kelly 59:01
Pretty much how it feels. And so I ran to a Starbucks in like two towns over and then came back and brought him coffee. And then the people in office are like, yeah, he's like, left. You were supposed to be here earlier. He was looking for you. And I was like, Okay, this is before cell phones. Okay. I had a pager. But I then find him walking home, which was way too far for him to walk, but he was going to do it apparently. And rather than call his parents he, you know, called me and I didn't answer the phone, and I didn't you know, so, yeah, I picked him up, and there's some construction and he's yelling at me and I'm like, Hey, I got you this coffee. I thought it would be a great surprise. I thought, you know, it'd be really nice. I even brought the people in your office. Some coffees, and I thought it was I was just trying to surprise you with something sweet and kind. And he took my wallet and threw it at my head while I'm driving and went out the window in a construction zone, so then I stopped and crawled on the ground wall, all my stuff is on the road. Nobody ever did anything. You know,

Scott Benner 1:00:11
it's demoralizing. It's terrible. I don't even I mean, there's obviously nothing to say it's just, it's, it's a mess. I don't know how you don't know how you got this far through it to be perfectly honest. It's, you know, it's just one thing after another. And it was,

Kelly 1:00:30
yeah. But one day, I, all by myself broke my leg. And I was standing on my front stoop, reading my mail, I had moved to my own apartment at that time, because every apartment I lived with roommates with always told me he wasn't, he was not allowed to come to it anymore. They didn't like him. And I guess, their way of trying to push somebody out of my life was to say, Hey, you can't live here anymore. If that person's here. So I finally found my own place. I'm reading my mail, I fell, because I have facial issues. And I broke my leg. But it was a hairline fracture, I could still walk, but it was so excruciating, excruciating ly painful that he got to my house that night. And I said, Do you think you can keep taking me to the ER, he's like, you're fine. There's nothing wrong with you. And I go, do you? Do you see the bruise on the leg? Can you take me to the ER? And he's like, No, you're fine. And it was just, it was always like that, you're fine. And then within like, two weeks, I went to my doctor's and I just cried so hard to her. And I mean, she knew what was going on. Right? She knew she, she cuz I was like, I'm so depressed, I'm this or I had other things that would happen.

So she took me down to the ER and tried to admit me

Scott Benner 1:02:04
to try to get you away from him in general. That and the other things, yeah,

Kelly 1:02:10
okay, get help. And I didn't understand what was happening. So I had to call my sister because I if I was admitted, that would affect my job, and how is that going to pay my bills, I don't live with anybody. And I don't have any support system. That guy is my support system at this point where I'm so isolated. And my my sister's husband's a psychologist in a hospital system. And he talked them out of it. And I went home. But in the process, I was required to join the crisis Women's Center, at the hospital. So every week, I had to show up at overlook Hospital in Summit, New York Summit, New Jersey. And, and, yeah, I had somebody named Christine. And whether she knows it or not, she saved my life, because she taught me how to talk to him and not get hit, and to mirror behaviors to him. So I did what he needed me to do at the time. But then when it came down to breaking up, she always says, you're always trying to break up with him, and you're trying to get out of the situation. And I said, Yes. Well, he has to think he's breaking up with you. He's got to break it off. And so they taught me over four or five months of going every Tuesday that I, I would tell him, yep, I'm going to talk about you and how you treat me. And they said, it holds him accountable for his behaviors. And, and the process of it, he broke up with me. And I was 30 at this point. And he never stopped coming to my house or ringing my phone or checking on me at work. Just so you know. That went on.

Scott Benner 1:04:11
Yeah, until you meet your husband. I don't even Yeah, you Kelly. I don't even know what to say that it's a that it's necessary. That a crisis center teaches you how to slowly break up with a lunatic. Like that's just it's that that is necessary, I think says a lot. Really. That's my God.

Kelly 1:04:37
And that's what a lot of people don't understand about women and abuse. They want to get out. Why don't they get out? Because if they walk away from this person, this person is still behind them. Because they think they own you. He he got married in those two years to somebody else. wouldn't leave me alone.

Scott Benner 1:04:59
Wow, it's Yeah, I mean, listen, if you want the the high level takeaway from this ladies, and I'm being serious here, don't take guys that can't afford their own car. I swear to you, it's an indicator. It just really is. I don't know why in a driving society. If a guy's asking you for a ride, I'm telling you, there's something wrong. That's all. I don't mean to to make light because I'm not I really feel like that's something that you should pay attention to as a red flag. I

Kelly 1:05:30
helped him get a high powered job don't really don't think he he didn't. He ended up driving a Porsche.

Scott Benner 1:05:37
Jesus. I know. That's, that's just upsetting. Alright, so Well, okay, so Kelly, you know, that's a long that stuff, I guess pretty, pretty far from your past not probably doesn't feel like it when you start talking about it. But you know, 15 years ago or more. So when you meet your husband, and things are just normal? How do you, you're able to accept that and just move on and be normal?

Kelly 1:06:05
No, no. I'm just not a normal person. So I can't accept that. And I guess I guess, I guess my, I don't know, I just, you know, I sing that song to myself from like, Sound of Music. Somewhere in my youth or childhood, I must have done something good.

Scott Benner 1:06:24
That's what helps.

Kelly 1:06:25
It does. I sing it to myself every time I'm like, How did I get here? I wouldn't change a thing. I'm so glad I'm here. Because where I am, I'm having a very happy I've. And I didn't know what normal was until I met my husband. And then he's just just really nice, intelligent guy. And so I when he, by the way, just so you know, when he asked me to marry him. I said, you don't even know me. I'm crazy. I have ADHD. Do you know I have ADHD? And I'm dyslexic? I mean, I walk into things all the time. I'm a huge clucks. Are you sure you're ready for that?

Scott Benner 1:07:06
Yeah, you should not have done that. You should have just said to all this guy seems normal. I'm definitely going to start trying to hang around with normal people.

Kelly 1:07:14
Well, at that point in time, I didn't I wasn't sure he was normal, though. Because I actually did. I did date, like numerous people. And the first minute they did like, anything controlling or anything weird or anything, just anything. I was like by sorry. Nope. Yeah. So it was it was like two years of me dating while that other guy is still following me around calling me and showing up my house on random moments. Yeah. And

Scott Benner 1:07:45
so we're split. Let's interest that. Well, it's interesting, because your life is beginning to split in two different directions. But it took a very long, long time for that Velcro to pull apart. And because the bad boyfriend person was still trying to stick to you, and you were trying to go in a different direction. And let's, I mean, it's amazing that you were able to and it sounds like you know, with a lot of help from people.

Kelly 1:08:11
I did. I've always had angels out there. Yeah, helping me. That's and that was one of those weird things. It's so weird. I'm not I know I'm Catholic, but I'm not religious. But you remember that boyfriend I was telling you about the the one my mom made me break up with Yes. When I broke up with when that guy broke up with me, but really I broke up with him in a very long, elated way of doing things. It was no a lady elaborate way of doing things. I started having dreams about my ex boyfriend of that time. And what I hadn't known is the day that he broke up with me was the day that that he died.

Scott Benner 1:08:52
Wait, wait, hold on, stop. Start over which boyfriend, the boyfriend my mom broke up with when you were like 1616 The boy wanted to have sex with you.

Kelly 1:09:06
But no. She said I wanted to have Yeah, that she said yeah, he died. He died with cancer. When he was 29 Oh my god. I didn't know. But the day that my relationship ended with the bad guy. I had been dreaming about him for a little bit. The first day of the first boyfriend. I mean really honestly, he was my first boyfriend. And I had been dreaming and he always had told me you know, I he had always said he did love me. Stuff like that. And I even add had kept up with him over the years, even though I was dating other people he had you know, he had still been my friend. And then when he met his wife, I guess he had come to my house and he had said something to me. Um, you know, I met somebody, and I wanted to just make sure it was okay, that this is the way I'm going because this may be something and I didn't know what he was asking me. I think I was like 1920, right. And I was like, I don't know what you're asking me. Because we're not together. And he's like, Well, I'm just checking if we couldn't be together. And I was just like, I'm like, you live so far away from me. I don't think this would work. I'm in college. I'm just trying to be free. I mean, I'm just trying to be free at this point, because I had such a tumultuous relationship with the previous guy.

Scott Benner 1:10:36
Oh, yeah, I have to tell you, if you would have gotten back together with him, and he passed away 29 from cancer, I would have thought that's on brand for Kelly. You know, like, I'm actually the whole time you're talking, I'm thinking the diabetes for your son is on brand, like because you must have just, like been like, oh my god, is this like, this stuff never going to stop. You know what I mean? Like, just, I mean, cuz you're, you're, you're build a life. You're doing it now. And then your son gets diagnosed? I would have been. I mean, I'm asking, how did that strike you at that time?

Kelly 1:11:12
So I'm part of that relationship where I was abused was a lot of abuse in the car. And so when this happened, so you have to understand what my husband's job is first. Okay. My husband works at sea. He's a merchant mariner. He's a chief engineer on a ship. Okay. Okay, and so he leaves for like, 10 to 12 weeks at a time, sometimes the longest he's left it's 141 days. Well, I'm by myself. And so we had gone his dad likes to sometimes sometimes he flies out of where we live or Hill, we have to drive down if he depending on which port he has to go to. We drive to look like Elizabeth or something. New Jersey? Yeah. That port. And so I was meeting my father and my father in law in Newburgh, New York, because that was kind of midway for us. And he would take him the rest of the way to New Jersey. And we would we sometimes go to like a local popular, inexpensive, breakfasty kind of place, like not a diner, but a popular. You know, I'm trying not to say the name. Sure. And so we had gone there that morning. And I was leaving my husband with my father in law, and my son is sitting across me. And he orders a plate of pancakes. When he's six. Granted, he's a big kid, by the way. Because I'm six foot my husband's six, two, so yeah, we're not small people. And he ate three huge pancakes. And then he asked for my father in law's parents cakes, and he ate those two, those four pancakes. And then he took my soda. And he took the toast that was on the table, and anybody sausage or bacon or anything, they had anything that was leftover, he asked to eat. And I, I was like, what is what is up? And so he had, we thought I had had him at a doctor's office twice in the last couple days, but we have to move to bring daddy to work, you know. So this is what we do. And we drove down, we dropped. My husband was my father in law, and I said, you know, I'm gonna go to Target afterwards. Because we don't live anywhere near where there's a target. Just so you know, there are places there's no targets. And every time I tried to go shopping, we had to go back to the bathroom. I was like, literally every five minutes. I don't even know what his blood sugar was, but he was graying. He was had to go the bathroom so much that I was like crying I pulled over on the way home like six times so he could I had a minivan so he could pee out the door

Scott Benner 1:14:13
right there's no way he didn't love that right? He probably did. Oh my gosh, you're saying it now and I'm like I want to do that.

Kelly 1:14:24
I wish I could but I hear you can if you get this certain little cup thing.

Scott Benner 1:14:29
Female I would find that freeing I believe to pull over on the highway and just pee out the door.

Kelly 1:14:35
Pretty much but I you know yeah, things are best years old and I'm a spastic. I have a two year old in the back. And then I have at that time my other my other child is eight. And we had had a rough time with her the previous year because she had a burst appendix. So I'm like super on guard mommy. Well, let me tell you. I'm feeling my son's belly. Is this tight? Does this hurt? Does this every day I at this point, every time he gets sick, that's what I would do. And he's like, No, I'm fine. I was like, then why do you have to pee so much. So, I actually had had gestational diabetes during my third pregnancy, okay, for my two year olds. And I had. So here's one of my ADHD moments when I went into the hospital to be trained by the nutritionist who also apparently is a type one diabetic. I was giggling because at that time, my son was three, three to four, somewhere between there. And he had just gotten diagnosed with global dyspraxia. But they had suggested I modify his diet to make sure he wasn't allergic to anything read to make sure he wasn't allergic to this, because he had always had stomach problems, like eternally crying, stomach problems that his stomach hurt. And this is years before he got diagnosed, you know, and it was just even as a baby, always crying, always giving something for his stomach. Always, I never slept anyway. Because and then I had another child. So it was just take this food away, take that food away, we went gluten free for a year, it did nothing. Like took all any kind of things with dyes. We did all this stuff. And in the process of going to learning about nutrition, I sat there with this nutritionist who's telling me that I have to do all this stuff. And he's looking at me, he's like, why are you laughing? And I'm like, so many months pregnant. And I'm just laughing because I don't know how to react to all the different diet things. Now I had to do that I was already doing for my kid. And I was like this. I'm laughing because life is funny.

Scott Benner 1:17:01
But as bad as I've been through worse, what do you think of that? Yeah, but

Kelly 1:17:07
I didn't say anything. I just I was uncomfortable. I was very uncomfortable. A this guy was pretty hot. Be I'm embarrassed and see I'm inappropriate at this point. So I say nothing. I just sat there, like, smiled and laughed a little. And I was just like, so he had told me some things, some signs that I had to look for. And these were all the signs that my son was having. Yeah. And he didn't know that he saved my son's life by telling this stuff. So several years later, guess who's our pump trainer? The hot guy.

Scott Benner 1:17:49
By the way, if girls were uncomfortable around hot guys, I think this explains why people are so comfortable around me. I just realized that now when you were saying I was like, Oh, that no one's ever been uncomfortable. Oh, then I was like, I got it. Alright, I say. So, okay, are you? I'm dying to know, Are you incredibly good at diabetes? Or do you struggle with it?

Kelly 1:18:15
Well, I hyperfocus That's it. I'm sorry. I spent the first couple months figuring everything out. And while my kid is MDI, I kept him so he's never been number one, his diagnosis before 10. Number two, his a one C was 7.8 a diagnosis. So I caught this early pretty early. Yeah. Because of the guy in my nutrition meeting, right? And then it just it saved his life. And I then went down the rabbit hole of diabetes. I didn't even I knew of you because at diagnosis, my doctors the nurse practitioner gave me your name the city city. She gave me your juice box and listened to Juicebox Podcast but at that time, we didn't have cable. We didn't have any of that stuff. We had HughesNet which is a satellite, okay. And I didn't have enough data to listen to you.

Scott Benner 1:19:17
That's nothing I can do about that. Kelly. That can't be my problem. But I understand the idea. Wait, what hospital by the way. Albany Med, Albany med. Okay.

Kelly 1:19:28
And Albany, med pediatrics. endocrinology is our doctor and they are amazing. We see a nurse practitioner Christine Wohlfahrt. And she is an amazing endocrine. NP. And she's awesome. And so is nurse Nancy and Kristin all of them. They are awesome. Let me just shoot them. Yeah. And so we also you know, Alex, I shouldn't have said it. Well, Alex is my son. Okay. Uh, Alex has I don't know, I've always been able to handle this. I've always managed, there was a lot of sleepless nights. Let me let me tell you, those sleepless nights were spent. I like literally stayed up for like five days straight when he was diagnosed and just read, read, read, read read. And here's the hyperfocus I can read that stuff if I have a desire, and it was constant and with in. So, two days after we came back from the hospital my son started vomiting. And I called up nurse Nancy. And she, she was like, Well, you know, just just do straight basil. And just give him sips of soda or sips of drinks and just stay there with him. But you have to make sure he gets insulin. So drink insulin, check blood sugar, and I was like, okay, okay, I got this. And I'm on like, freaking out. I sat next to him, his bed on the floor, the entire two days that he was sick. I kept him out of DKA. I kept him below 200. And he just had a stomach virus. There's just a fluke. But when he was diagnosed, one of the the, of course, you know, he had to be diagnosed on a day that was like an eight inch snowstorm. And I had no coverage for my kids at home because my husband had left to go to work. Yeah, and was already in the middle of the Atlantic Ocean.

Scott Benner 1:21:38
At this point. He has the global dyspraxia diagnosis already or Yep, yeah, that's already there. And am I understanding that correctly? I'm looking online here. It's also referred to as clumsy child syndrome. Yep. Confused matters more developmental dyspraxia. Basically, DCD refers to an overall motor incoordination. Yeah, like bumps into things.

Kelly 1:22:05
But so when he was 10 months old, he broke his arm. Okay, and we couldn't even figure out how he broke his arm. Because we had our mattress on the floor, and he had kind of crawled off the bed at me. i It was like, 11 o'clock at night, and I just went to the bathroom. And yes, my kids slept with me in the bed. And that's just what we did. Because he never slept anyway. So yeah, he broke his arm had a buckle fracture in his I think it was his right arm. Yeah, it is rest, right. That's where you get those? Yeah, yeah. And he had a lot of accidents that were just really fluke. Like when he was like to, I don't even know how he cut himself. He found a way to cut his hand so bad that he had to get stitches. And I was like, I was all I did was walk around the house, and we were playing hide and go seek it with my daughter. And I was like, I don't even know what you touched. Yeah, like, I couldn't find it. But I found bloody hand marks on the back door. And I was like, what happened? Where's my kid? You know? And, yeah, it was just always awkward things. And at this time, my daughter was getting speech therapy. And she was three years, two to three, she got speech therapy, and he was like 1011 months old. And the therapist looked at me, and Katie was her name. And she goes, Hey, Kelly, there's there's just something not right about Alex can just, he's not meeting. He's not meeting the milestones the way he should be. And I was like, Well, the doctor says, you know, everybody's different. So I was like, Yeah, everybody's different. And she, we then got him some help. After he was age. One day, the health department came in and assessed him. And he got speech therapy from Katie and both my kids at the same time. And they were both helped. But then all of a sudden, he qualified for occupational therapy. And so they come to your house where I live, and they do that, and it's all covered through the health department, because they're trying to help kids get to where they got to. And we're always going to developmental pediatrician at this point in Albany. And so, yeah, I'm slowly we got a diagnosis over two years, after a lot of assessments and then my son has, for most of his life, had yoga therapy, occupational therapy, physical therapy, because he also seems to have hyper joint mobility issues too. Okay. And he's, he grows so exceedingly fast also, which is a little bit unusual, but it's, it's good but he if he was to do like, say he was to run down the road, he fatigue so much his knees and joints hurt so bad. He stops and he his blood sugar drops like really fast. So more abnormally than a normal person or a normal type on there but

Scott Benner 1:25:12
the key I'm sorry, good.

Kelly 1:25:16
I was gonna say he just everything is quicker and faster he fatigues he gets shaky. Even before diabetics because of the global dyspraxia hands shaking. They once told me he'll never be able to ride a bike, he rides a bike. He'll never ever play with Legos. He plays with Legos, he'll never be able to write his name, right? Well, given time, he's still, in my experience, men don't have the prettiest handwriting. So

Scott Benner 1:25:47
what I'm seeing here symptoms of this can include poor balance, poor posture, fatigue, clumsiness, difference in speech, perception problems, poor hand eye coordination.

Kelly 1:25:57
Yeah, his speech was really delayed. I mean, when he would say I have videos of when I look back at videos, back when, when he was Wow. Like, he would talk like that. Right? It was it was different. So here's the thing, global dyspraxia, just like everything else, there are. Everybody has. There's a severity level and less of a severity level. Every time they've said we can't do something he does it. So

Scott Benner 1:26:28
Harry Potter has this. The actor the actor? Yeah. Interesting. Yes. A lot of people do. Right? No, it's actually the thing I was reading says that five to 18% of the population may have it. Yep. That's interesting. All right.

Kelly 1:26:43
I believe it comes under the bracket of dyslexic diseases are developmental delays, not disease.

Scott Benner 1:26:52
And so it's not that I haven't enjoyed this. But back to my original question from 10 minutes ago. How are you? It's funny. I was having a good time. How do you end up managing like do you hit your goals for his blood sugar's what are your goals?

Kelly 1:27:09
So here's the deal. I keep his goals 85 to 180, because we, the doctor and I have talked about it a lot of times, like when I will check him, his blood sugar's always significantly lower than the Dexcom says, and we think that there's, so here's the thing that goes with this. He also has, like, it's not gastroparesis, but it's a slowing of the intestines. But we've started to think that it has actually everything to do with global dyspraxia, not diabetes, the all the motor skills, motor movement throughout the body is less. So we think that he has his blood flow and everything might just be slightly slower, slightly less.

Scott Benner 1:27:58
So the process of his waist coming out is slowed.

Kelly 1:28:04
Yeah, okay. Like I said, he always had stomach issues. He's always had so many issues with the stomach before we even got diagnosed. So it was always trying to figure out what he was allergic to. They did allergy testing, they said, pretty much nothing might be sensitive with milk. Have you

Scott Benner 1:28:24
tried, I'm gonna end up saying this a lot, because it's been helping Arden but have you tried something simple, like digestive enzyme along with his meals to see if it moves things through better?

Kelly 1:28:35
You mean a probiotic?

Scott Benner 1:28:37
No. More specifically, there's, there's like digestive enzymes there's, you take them right along with the meal.

Kelly 1:28:46
And no, I haven't tried this. Yeah. I'll take the suggestion though. Worth a

Scott Benner 1:28:50
shot. I mean, you just kind of pop them with your with your food. Okay. And then if he's not eliminating on a good schedule, adding maybe like magnesium oxide might be valuable. We have

Kelly 1:29:05
added magnesium, magnesium oxide did add magnesium. I don't know if it's oxide, though. Check. That's just magnesium. Man. And so he gets a leg pains, a lot of leg pains throughout his life. He's always had severe leg pains. But he's also he's 11. And he's 511.

Scott Benner 1:29:25
Yeah, that's hard to know. Well double check the magnesium because there's a couple of different versions and magnesium oxide is what you're looking for to go to the bathroom more frequently.

Kelly 1:29:38
They have him on MiraLAX eternally, like he just takes me relax every day because if he doesn't, he has that whole slowing. And so he'll go super high. And then when he actually eliminates he'll go super low. But for him it's like I've found him at like 29 So

Scott Benner 1:29:56
like quickly happens fast. It does Yeah, cuz his body When he empties out, then his blood sugar drops, right? Yeah. So they have him on a laxative. Does the laxative work or not really?

Kelly 1:30:09
It does. It does so, and everybody swears it's not bad for him. I've read a lot of reports, I've gone back and forth, but this is what helps. And I don't really enjoy the low blood sugar like that. No, of course. So like, I will go in there and it will say he's 85. And he might be 40. So it's harder, and has a one C has always a sense diagnosis, his first visit after being diagnosed, he was 6.2. And then he was five point, I believe it's 5.6. But last, last, a one C was 5.6. The one before that was 5.2. We've always stayed between 5.2 and 5.6. Am I am maniacal controlling person I might be. But I also we loop also, at this point.

Scott Benner 1:31:09
Sounds like you're doing well. You really does. Yeah.

Kelly 1:31:13
We don't have a lot of side effects with things. But I take things a little bit more serious than other people do. And my husband just backs me up. He's the tech guy. He he codes on his own anyway, building systems and stuff. And I am I'm just more medically capable. That was what I was gonna go to school for. So

Scott Benner 1:31:34
Gotcha. Well, here's something very quick about magnesium. I'm reading from a health line article. Because of its low absorption rate in your intestines. Magnesium Oxide may lead to digestive effects like diarrhea, so if you're not going, it gets you're moving it strong laxative effects are why it's commonly used to treat constipation. Jumping ahead a little in the article. In contrast, magnesium citrate, magnesium acetate, I'll tolerate magnesium malate, and magnesium glycinate all have high absorption rates, and are more effective at increasing magnesium levels. So if you're trying to actually bring your magnesium level up, you don't use oxide. But if you're trying to make yourself go to the Poopoo oxide is the way to go. And sometimes doctors get that messed up. So check the magnesium to make sure you have the right one.

Kelly 1:32:23
So we're not using magnesium to help them go. Number two, we're using the magnesium to stop the leg pain.

Scott Benner 1:32:31
Is it but is that working for that? Yes. Okay, good. Well, then maybe that's maybe you could do some magnesium oxide. In addition, yeah, it would be my was what I would wonder and digestive enzymes are I'm just gonna pick one that I'm aware of a second the company called Pure that makes it I mean, a lot of people make them but I'm choosing that one to try to find the find what's actually in it for you

why not? Tell me Give me a second

you must be thrilled that like something about your personality is actually helping with something like with diabetes, right? That's pretty cool.

Kelly 1:33:38
It's it's very encouraging. And because of my searching because of my hyper focusing, which actually I'm trying to kind of get away from sorry, that's my text messages. That's

Scott Benner 1:33:52
okay. That's what happens. You get a text.

Kelly 1:33:55
Yeah, that's my I love that. I love that. That movie.

Scott Benner 1:34:00
What's it from? I couldn't hear it. It just sounds like kids.

Kelly 1:34:03
What is it? What is that guy? Steve Carell movie. This is how I do things with a

Scott Benner 1:34:12
ripoff. cartoon. Oh, a cartoon.

Kelly 1:34:15
The cartoon is the Steve Carell movie where he's, he's the bad guy, but he's really the good guy and he adopts his little girls.

Scott Benner 1:34:21
Oh, he's grew like crazy. Yeah. Stuff like that.

Kelly 1:34:27
That's the little girl screaming. I'm so happy about my unicorn.

Scott Benner 1:34:33
Alright, so I'm looking specifically at the pure encapsulations version of the digestive enzymes they list 391 milligrams of proprietary. Enzyme blend, amylase protease protease six lysosome lays lactase Lepus beta glycinate I'm not I'm butchering these words in Virtus cellulous Alpha Gala, Tosa. Oh my goodness. protease three phytase, and people who know how to pronounce these are probably like Way to go, Scott. He must cellulous. So I don't know, honestly, what any of that is, what I can tell you is that Arden was digesting your food slowly. And we went to a regular doctor who, like, immediately turned us off by like acting like she was gonna need pain medications and all this stuff. And we were like, Wait, what the hell like this all seems very like, like a big leap, you know, not something she'd want to do. So we added these, these enzymes to her meals, and the magnesium oxide to her diet to help her go better. And she had a real great like, change. We bumped into a little bit now when she's at school, there's so much fried food in the cafeteria, that she's starting to kind of like even though she's taking this stuff, she's having some troubles. So we actually talked to her last night and said, you know, let's cut things out with oil and fried stuff, like and she's like, that's gonna be hard here, but do that. And I think she's got some stress to be in a college, you know, for the first time. So but I'm telling you that for months, this was when she was on a reasonable diet at the house. This stuff was helping just 1,000,000% So it's not expensive, and it's worth giving a shot to you. So good luck. Yeah.

Kelly 1:36:29
I don't we don't even do any fried foods here. Really? Yeah, ever.

Scott Benner 1:36:33
Yeah, we don't normally either. And then, you know, she's, I think she's realizing like, she's picking stuff up in the cafeteria, and she's not paying attention to how it's cooked. And so we had that conversation last night to pay attention to that.

Kelly 1:36:44
But that's how you get the freshmen 10.

Scott Benner 1:36:47
Well, it's how you, it's definitely how you eat a bunch of oil that you don't realize you're eating and it's not good for you and hard for your body to process. So Kelly, let me ask you if there's anything we haven't talked about, that you meant to because we're up on time.

Kelly 1:37:01
Oh, um, oh, I was gonna tell you about the diagnosis when he was diagnosed. That affected my, yeah, complex, complex. PTSD, tell me because when he was diagnosed, I had to leave him at the hospital without me to go home because I had had to ask my brother in law to come get my daughter from school. And I had my two year old with me. And I don't do hospitals very well, at all. Since since forever. But because I was so highly abused in a car. I couldn't get in the car to go home. I had to like work myself into the car to get home to leave him. I see. And it was a struggle. And it really affected me. And it was like the first time that I had to deal with the abuse in yours.

Scott Benner 1:38:06
Oh, I see. Okay, so the PTSD kind of just triggered you. And then it brought back your desire to not be in a vehicle because this is where the guy would yell at you and hit you. And so when your son's diagnosed, the eight you get better whatever happens happens, and then all that stuff comes back. Well, it's interesting.

Kelly 1:38:27
And that's like the first time I actually had to kind of confront a little bit of it with my husband.

Scott Benner 1:38:33
Oh, because all of a sudden you can't get in a car. And that doesn't make any sense to your husband.

Kelly 1:38:38
No. For years, I've told them please don't speed around corners and stuff it I get like I get like, I guess I get nauseous. Okay, yeah, nauseous in the car. But if I'm driving car, I have no problem. There's some control things. But when I was leaving that day, I just broke down and fell on the ground. And I just couldn't deal with getting in the car. And I'm putting a two year old in the backseat going I can't believe this is happening and I can't believe leave my kid. And I can't believe I have to trust these strangers, which I don't trust anybody because of all my experiences. Sure. And I just struggled so much just to get in my car and drive. And then of course it's snowing. Eight inches. It took me it's usually only an hour drive to Albany, but it took me like three hours to get home. And then three hours to go back. Yeah to be with my kid. Oh, that makes sense.

Scott Benner 1:39:39
Yeah, but so it makes sense that it takes longer and at the same time. You're you're staying away from him longer because it's taking you longer which is also making you upset. Yeah, well that's a vicious circle.

Kelly 1:39:53
It is. But yeah, I I just focus on everything and That's what it is. And he's got a lot of support at school. He has a one on one aid with him. 24/7. Yeah, he's a smart, smart kid, by the way. No, I imagine. He's a smart kid. He doesn't believe that he's smart, because he's always been stuck in those special classes with other kids. Yeah, I understand that that's a little frustrating. And this is probably the first year that he's actually moved into the normal population completely. No Good for him. That's excellent. So yeah, and but he has an aide because with the global dyspraxia in his hands, he sometimes shakes and he can't, the fine motor skills just when he's in a situation, you can't tell if it's the diabetes, or if it's global dyspraxia? Oh, I see. He may need somebody to dial into his phone for him.

Scott Benner 1:40:48
Okay. Oh, I do understand that. Okay. And so somebody, he has an aid for that?

Kelly 1:40:54
Yes, he does. He has an aide 24/7. And, you know, the nurses are always just because he's also coming into his own where he wants to do everything himself. And it's been a bit of a struggle. And recently, we've been dealing with some like, hey, you know, we are not with you. And this, the sitter didn't know that you gave yourself six units of insulin. Why did you give yourself six units of insulin? And then take another 14? No juice, yeah. Oh, within a half an hour. And he was like, what? And then he's like, I'm like, Yeah, tell me that you deleted something in there. Because I'm thinking you did. He's like, Well, and I'm like, we don't really like using basketball me. But it's just little things like that, that he wants to take on himself. And I'm bold with insulin,

Scott Benner 1:41:48
like, you know, he's struggling. He's struggling to do stuff. He's,

Kelly 1:41:51
he's struggling to do stuff on his own. Because, you know, he's, he's 511. And all this responsibility is put on him. And people think he's way older than he truly is. He's 11. Yeah. And it's, it's a power struggle recently. And

Scott Benner 1:42:06
he's got his body, but not the mind for it yet. Correct. Yeah. What happened to my niece? By the way, I hope this doesn't seem like I'm turning this into a story about me. But that's a reference at the beginning of our conversation. But my niece got really tall very quickly. And it was hard not to treat her like she was older. Because standing in front of you, it felt like she was interesting. Yeah, I see that. And then he got this other, plus the hand eye coordination thing and everything else that's happening.

Kelly 1:42:36
And I mean, developmentally, he's, he's, he's more where he should be developmentally. But he's all masculine. And he wants to be a tough guy kind of thing right now. Yeah. The only boy here when dad's away. And it can be a little overwhelming on me. And more recently, I mean, literally, in the last two months, he went from five, nine to five 511. And it's like, when I say, Hey, you actually have to take care of your room. And if that means filling your diabetes shelf up with your stock, that means you're doing it, right. And it's just, you know, you got stuff like that.

Scott Benner 1:43:17
I hear. Okay. All right, Kelly. Well, I can't thank you enough for sharing this with me. I'm sorry to push you away real quick. But I have to jump on a different phone call. So I'm good. I'm up on my time. But I I don't know why I didn't realize this was going to be an after dark episode. But here we are. It definitely is. And I'm, I mean, I'm, I don't obviously I telling you, I'm sorry, for what happened in your life is meaningless. But it was it was nice of you to to share it with everybody. So that they can, they can can listen along and maybe, you know, recognize some things that have happened to them or to other people in their life. So I appreciate it very much.

Kelly 1:43:56
Thank you for having me. No, I was and I'm happy and I'm safe. And I'm sound

Scott Benner 1:44:01
No, I know, it's the hardest thing about these conversations. When people go back into their past to relive things you can kind of get like, you can think like, oh, that's happening right now. But you were describing stuff that had happened to you in the past, which is obviously incredibly impactful, and it's impacted the rest of your life. But at the same time, you're not in that crisis at this exact moment. But no, I'm in a great place. Yeah, absolutely.

Kelly 1:44:26
There's hope for everybody out there there's hope get help and and Domestic Violence Crisis Center. They are there to help you. They will get you through it. And they give you a lot of work for you to get through life. And then I've just I've just isolated myself more and how could you not during the pandemic, but I live on a homestead I homestead and I have chickens and there's goats down the road and horses and cows and I farm.

Scott Benner 1:44:53
Nice. That's excellent. And I kept thinking while you were talking how 20 more years from now, how much farther away that'll feel Oh, it will. A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox you spell that GVOKEGLUC AG o n.com forward slash juicebox. I'd also like to thank Ian pen from Medtronic diabetes and remind you to go to N pen today.com And of course, touched by type one.org. A really sincerely wonderful organization that you should learn more about touched by type one.org. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#806 Dexcom G7 Approved By FDA (with Dexcom COO Jake Leach)

Dexcom COO Jake Leach is here to talk about the FDA approval of the Dexcom G7.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 806 of the Juicebox Podcast.

What we have here is a bit of a Christmas miracle it seems. On December 8 2022, just yesterday, the FDA announced approval for the Dexcom G seven. And so of course, I have Jake leach here today to tell you all about it. Jake is the Chief Operating Officer at Dexcom. But more importantly, he's worked there for nearly 20 years, and his understanding of all things Dexcom is fascinating. I mentioned at the end of the episode when Jake and I finished talking, but I'm throwing questions at him from like, accuracy. You know, when's it gonna be available? How did you make this? What do you plan on doing about that? And Jake, just man, he just has the answers. Absolutely fantastic. It's a great conversation is only 30 minutes long. But it's a ton of questions that came right from you, the listeners a few of my own, and all of Jake's answers. So settle in, and enjoy. While you're listening. 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 health care plan.

If you're new to the podcast and you don't know anything about it, you should hit subscribe in your favorite audio app, Spotify, Apple podcasts, Amazon music, wherever you get your shows, follow or subscribe. The Juicebox Podcast puts up new content four times a week, Monday through Thursday, you'll hear interviews with an adult living with type one, or a parent of a child who has type one. And we talked about all kinds of stuff. For instance, there's an entire series of after dark episodes where we talk about topics that most people don't talk about. There's ask Scott and Jenny where I and Jenny Smith CDE, who has had type one diabetes for 34 years answer your questions. We have entire episodes about algorithm pumping on the pod five control, IQ and looping. There's the bold beginning series for people who are just starting out with type one diabetes. And all of the questions and topics were suggested by listeners of the show when they were asked, What do you wish you would have known in the beginning, there's the defining diabetes series, which is just every conceivable phrase and term that you'll use with type one explained in short, fun, understandable episodes, we define thyroid issues in the defining thyroid series. Talk about the different variables that impact your blood sugar's than life. In the diabetes variable series. There's an entire mental wellness series and heard about it. I wouldn't be surprised that diabetes Pro Tip series from the Juicebox Podcast, I could explain to you what it is. But instead, I'll read you this. And then we'll get to Jake, and the Dexcom g7 excitement. This is from a listener. My son was diagnosed type one about five months ago, I have learned so much from just the pro tip shows, and I will be listening to all of the episodes. This podcast is amazing, both for the information and for the shared experiences from Scott and his guests. They make you feel less like you just got hit in the face with the shovel. And more like you can find a way to keep your loved ones happy and healthy. Check out the diabetes Pro Tip series at juicebox podcast.com. Go to the top in the menu where all the series I mentioned and much more are listed. Or you can go right into your audio app and search Juicebox Podcast pro tip. And they should all pop up right in front of you the first Pro Tip series. Is it episode 210. It's called newly diagnosed or starting over. Yesterday, I woke up to an email about g7 being approved by the FDA. It's a number of months. If I'm being fair. It's a lot of months since it was approved in Europe. That surprised me. Did it surprise you?

Jake Leach 4:21
Yeah, it did. Yeah, we anticipated those two review cycles to be similar in time. And so our goal was to launch the product globally around the same time but the approval in Europe came as expected and the FDA approval took a little longer than we anticipated. So it did yeah, it very happy to have it now very excited to get the product in users hands now but it it did take a little longer than expected.

Scott Benner 4:49
Okay. Can you tell me why? Like what the

Jake Leach 4:53
primary reason was we had to, we had a feature in there called silence All that we had to remove it's it's in the product, it's outside the US, but remove it from the US product. It's basically a feature that allows users to silence the alerts for up to six hours. You know, so that if they're in a situation where they understand this, basically, I got it, I don't need to be alerted by my CGM. At this point in time, I'm gonna, my glue is gonna be high for a while I know that it's low. Really just silence those audio alerts, the FDA wants to see a little bit more information before they get comfortable with that. So we basically had to take that out of the product. For the US for now, we intend to put it back in very quickly here, working with the FDA. But that was the reason why the review took a little longer, because we had to actually make that change and then respond to the FDA with the changes.

Scott Benner 5:47
Well, it's interesting that it's making a change responding with all that all the backroom stuff takes that many months to get accomplished. It's, it's really crazy. Alright, so why do you like that feature? Why did you want to add it.

Jake Leach 6:02
So it's a highly requested feature by users, because they while they love their alerts and alarms for glucose, and the other aspects of the product, they, they, when they understand their glucose is out of range, they don't always need to be reminded every 30 minutes. And so with some of the particularly the low alerts, it'll continually remind you even if you acknowledge it, pick, you can only acknowledge, acknowledge it, and it'll come back in 30 minutes. So that is the primary reason it's really strong user request. And so we are getting very good feedback about the feature outside the US. And like I said, we intend to bring it in as soon as we can.

Scott Benner 6:39
Okay. I'm gonna ask you to be paired to you. If there's anything you want to say before I hit you with a delusion of questions that people gave me to ask you. Do you have any app happy

Jake Leach 6:49
to answer all the questions, but just wanted to share in the excitement of the community, and you know, everyone who we now have, you know, g7 approved, we're working very quickly to get it out. Early 2023. And my say early means quite early. And we be on the heels of Medicare, the CMS recommendation for coverage for folks, Basal insulin, so not just intensive insulin anymore. So really a lot of expanded coverage for use of CGM. On top of that you see the g7 approval. So could be more exciting time. For Dexcom. And for the community in general,

Scott Benner 7:30
is the Medicare distinction, a first step to private insurance accepting those ideas?

Jake Leach 7:36
Yeah, absolutely. Usually Medicare leads. And then private insurance generally follows quite quickly after that. And so its expansion of CGM to many people who could benefit from it who weren't previously covered.

Scott Benner 7:49
It. Is that an early step towards getting type twos covered?

Jake Leach 7:53
Yeah, so that that Basal coverage is type two. You know, most folks on Basal insulin are type two as well as anybody would take to it there has hyperglycemia challenges. That's also part of the recommended recommendation from CMS to Medicare. So yeah, and then there's, there's still, as you mentioned, there's still a group of type two individuals who would not be covered by Medicare. But that's our next focus, we want to focus on how do we get coverage because we know CGM has clinical benefit in that population. And so do it basically generating the evidence that's required to show that to payers,

Scott Benner 8:30
in my mind, getting it on to type twos without forcing them to get into a situation where they have to use insulin makes a lot of like, health sense to me.

Jake Leach 8:39
Absolutely. And I think we're a years from that. Um, you know, nothing ever goes as fast as I want it to go. So, you know, I think there there's, you know, a lot of folks are you know, CGM, it's continuing to expand and there's a lot of folks are working through, you know, glucose programs, the level two program at United is an example of, you know, an insurer, basically taking CGM and using it strategically in their type two population, to generate better outcomes. And so there's, there's gonna be a lot more to come over the coming years here.

Scott Benner 9:12
It's exciting. I've been interviewing a lot of type twos lately, and all of their successes seem to come from when they start to think about their type two diabetes, like type one diabetes, and they start using insulin in targeted ways, and they have all these great improvements afterwards. So anyway, that's way off the track for for a conversation where I only have here for 30 minutes, but well ask the big questions that I imagine you know, everybody wants to know, right? When early 2023 That's great. Will you have will it be like a wide rollout or is it going to be one of those things where you know, like, three guys at Tesla drive in the car and nobody else has one?

Jake Leach 9:51
It is a great question because, you know, we, we often do limited launches to make sure we got every word comfortable with everything the support of the product, the product itself. But we had the opportunity to do that overseas in Europe. So we did a limited launch there. And then we moved into full launch. And so our US launch will be full launch. We don't intend to constrain it. We feel comfortable with the amount of product we have as as well as the timing. So it's basically going to or early 2023, it's going to be generally available.

Scott Benner 10:25
Do you think it will create more initial customer service needs? Or do you think that the ease of use might actually take back your your need for CSR coverage?

Jake Leach 10:36
What we're seeing with a g7 o u s, is that it definitely has resolved a number of the things that we experienced with the G six launch that needed support. Any new product generally requires some level of new education. And so we were ready for you know, we have the support, we've done this is the seventh time we've done a product launch each one's bigger, but we learn every time we do it. And so we learned quite a bit from our G six launch about the expectation and customers and the support needed. And so we'll be ready for for it. We've been handling the European launch quite well. And so we're we'll be ready for us.

Scott Benner 11:17
Alright, well G six transmitters can continue to be made. And do you have Is there a timeline for that not to happen are

Jake Leach 11:25
we basically will continue to supply we are planning capacity for G six will continue to supply that product until everyone has transitioned over to G seven, the the folks that are kind of some of the end customers that were waiting for compatibility with G seven, those folks will definitely we've always loved sensors and G six transmitters as needed for that tire group until everybody shifts over we do intend to roll out G seven faster than we did G six globally in terms of, you know, kind of upgrading everyone up to the g7 product and so, but we'll we'll continue to make GSX as long as we need.

Scott Benner 12:09
Sometimes I noticed when I asked people hey, if you have questions for Jake put them here, sometimes I noticed you see their fears in the questions. And some of the questions. I think, if they weren't afraid they wouldn't ask, but this is one that I think I'd like to cover anyway, I know the answer. And I have no idea what the answer is. But a person asks, every time I changed my my G six transmitter right now, I kind of have to go into my pump and tell it I've put on a new transmitter. And now they're hearing that the g7 every device they put on, it basically does its own transmission, and they're worried they're gonna have to go into the pump, but that's going to be automated, I imagine.

Jake Leach 12:45
So there's a couple of things there. So we'll start with the, with the pump. So one of the things, advancements with G seven is there's a four digit pairing code. And it's just numeric. It's not alphanumeric, so there's only four numbers that identify the transmitter you're trying to pair with. And so there's some sophisticated analytics under the hood there that make allow us to do that. Because clearly the identification number for the transmitter is quite a bit more than just four digits. But the pairing code is four digits. So with a pump, you have to you do have to enter in the four digits. But because that's a more frequent process, it'll be more easily accessible on the mobile phones, the actual applicator has a QR on it, that you can just quickly take a picture and it loads all that information into the into the display device

Scott Benner 13:39
processes is sort of it happens quickly during it. But it's not some great thing where I'm scrolling through screens and that kind of No,

Jake Leach 13:46
it's designed, it's something that you have to do it. But it's very simple. And that's why we put made the pairing code we reduced it so that it would be even simpler for users. Cool.

Scott Benner 13:58
Well, people still be able to calibrate a g7 if they want to.

Jake Leach 14:01
Of course, yeah, absolutely. Yeah. Is it that feature is still there, if you want to use it

Scott Benner 14:06
is the adhesive on g7 the same as the adhesive on G six.

Jake Leach 14:09
Now it's different. If you look at the patch, it may look very similar from the surface, but it's actually a new, new adhesive. That is we've seen in our early clinical studies as well as early performance outside the US that there's less irritation with with the sensor patch. For those, you know, the very, you know, it's a small group of folks that there are folks that do have, you know, patch rotation issues. And so we've seen a reduction in the number of that. And the occurrence rate.

Scott Benner 14:39
Is there any chance that this is the time you're going to tell me that it's going to work directly to an Apple Watch.

Jake Leach 14:47
Not not right out the gate, Scott, but it's not far off. We built it into the hardware, we finally have the capability to have that directly in the g7 hardware. And so it's going to be an app release that unlocks that feature

Scott Benner 15:01
makes me remember, you know, you might have context for this when I was young, Kevin Smith, the film director was like blowing up. And he used to have these little private film festivals. And every year, I'd go to one that he would hold. And there was a, you know, you'd say, Hello. When you get there, you start to know them after year after year, people recognize each other. And the last time I ever went to one, I shook his hand, and I said, Will you tell me when I'm too old to come to these? And he said, if you tell me when I'm too old to make these movies, and I just had that feeling in my head, like, you and I are like, you're on the edge of retirement. I've been making a podcast for 20 years. And I'm like, is it gonna work with the Apple Watch? I don't know why that popped into my head, or why wasted time with it. But it just delighted me just now what I was thinking about. Alright, so it's built into the architecture at this point? Yes, absolutely. Yeah. Bluetooth architecture has been updated to include it. Do you expect that to happen with the g7? Yeah, absolutely. Okay. Yeah. All right. What's happening to the apps? Right, now we're gonna get a new, like, will a g7 users gonna get a new app? But will the followers like what all is going to happen there?

Jake Leach 16:08
Yeah, so the g7 plugs seamlessly into the end of the architecture. So when a new when, for example, when the user basically upgrades from G six to G seven, they actually use their same G six username and password. They enter that into the g7. And all their data is still in there clarity, still links in so now G seven is just updating their data, it also moves over their settings. So similar to when you enter your past user name and password into a new G six app, it remembers your previous settings, G seven, does the same thing. So it makes it easier, easy for customers to transition over. And then the followers, clarity app, all of that just they work. You don't have to get a new one. It works with g7, will you be updating the follow up? We will we've So over the past couple of years, we've been kind of laser focused on rolling out G seven, basically getting it ready for global launch as well as our Dexcom. One product. So both of those are on this completely new software platform. So we've been spending a lot of time our teams have been focused on that. But as we were rolling, we've been rolling out Dexcom one g7 has now got our US launch coming in a few more rollouts globally, through the 2023. In early 2024. The team is going to be we're going to be able to focus a bunch of the resources on continued innovation in the both the follow space clarity, as well as the g7 and Dexcom. One app, so bringing more features to those. So you'll be seeing a more rapid cadence, we've built a lot of software capacities, you know, basically the capacity to develop software to be able to do both Dexcom one ng seven at the same time. And across the globe. So we get a lot of capacity we can unleash on new features.

Scott Benner 17:56
Give those people something new to do. So at launch, no delta, no rate of change.

Jake Leach 18:02
No rate of change at launch. Not yet. Not yet. But it's on the list

Scott Benner 18:06
on the list for the new app. Okay. Android as well, right? Android? Oh, yeah. Yeah, okay. Yeah. How? Where do you, it's just kind of gets away from G. Seven for a second. But it doesn't really open access for things like looping sugar, pixel glucose, stuff like that, is that you guys? Stay in the course on how you think about that?

Jake Leach 18:33
Yeah, I mean, we've always thought about it in terms of, we want to have as much accessibility as we can. And so that's the reason why we have our API's. It's the way we do our partnerships. So I think it's, you know, we, we've always kind of embraced the community, the innovation in the community, and all of the great stuff that's being done there. And so, you know, we walk a fine line between, you know, regulated devices, and in making sure that users get access to their data. So our philosophy there hasn't changed. So while new systems do, you know, things change with new systems, for in all kinds of different aspects, and so there'll be no work to do for compatibility for anything, but we definitely understand how important some of those systems are to people.

Scott Benner 19:22
I think every time you make some sort of an announcement about something, excuse me, it brings up anxiety for people who loop or, or something like that, like they think like, is this going to be the time I wake up and it just doesn't work anymore? So it's nice to hear. Accuracy stuff first. 24 hours? Same better different than G six.

Jake Leach 19:42
Yeah, it's, it's, it's a little better. You know, it's still the lat the first day is, while good, the days after that are even better, in particular with the seven with the 8.2% Ameri D in the ice CGM. US study that's, you know, most most accurate I CGM data ever produced so we are very excited about that and so G seven is you know it's it's based it's based in the technology that we've been working with with G six and other generations but we've made quite a few enhancements both to the sensor probe and as well as the glucose algorithm

Scott Benner 20:22
that mark number is that just for arm where is that anywhere that it's okay to where

Jake Leach 20:27
it's arm, its arm where so it's 8.2% and adults 8.1% arm were in in peds. And then with peds, we also have the upper buttock location indicated.

Scott Benner 20:41
Okay, how about somebody is asking me about accuracy at higher numbers when people are fighting with high blood sugars. Do you see any improvement there? I guess I should just ask you how you see this as an improvement over GSX? Really?

Jake Leach 20:55
Yeah, it's what it really is, is it's all about even more consistent sensors, right? When you look at a population of sensors, in a clinical study, you know, it's not like every single one has an MA or d of eight, you get some with, you know, Emiratis have four and some of the you know, in a particular individual or particular sensor, you want to get to be, you know, a little bit higher than that. So, what we're seeing with G seven is there's less outliers, it's more it's a tighter distribution of performance. And so that's one of the things that really helps drive down overall system performance. Because the M or D number you see is it's a average across a an entire clinical study.

Scott Benner 21:33
So if I said to you just do a clinical study of day three today, eight, you'd see a better number than me making you put in my entire 10 day where yeah, of course, yeah, that's how

Jake Leach 21:45
people game CGM systems, right you do. You do a clinical study and don't do any data on day one, or you don't do any hypoglycemia data. I mean, there's there's all kinds of ways to game clinical studies, the ice CGM criteria that the FDA said basically specifies exactly how you're supposed to run your clinical study, which is why it's a rigorous standard.

Scott Benner 22:05
My buddy's a good guy, if you don't think about the fact that he takes our wallets when we're together. Have a look at the whole picture. All right. Out of pocket costs, is it going to be similar to G six. So this episode doesn't have any ads on it, because it came up rather quickly. You know, the Dexcom G seven announcement was yesterday came out of nowhere. I wanted to get this episode with Jacob for you right now. And I've already I've already done all the ads I need to do this week. So I don't have any left. But I do want to just take a second to acknowledge that I'm able to make this podcast and on a Friday afternoon, surprise recorded episode with Jake leach from Dex calm and get it right online for you. Because this podcast is my job. And it can be my job because of the sponsors. They keep they keep the whole thing going, they keep the lights on they helped me pay my bills. And I want to give them a second because it's the end of the year. And we've had we have a lot of great sponsors. And I want to take a moment to thank them for their sponsorship in 2022. And to thank the ones who were staying with me for 2023 and they are on the pod makers of the Omni pod tubeless insulin pump and that Omni pod five automated system, you can learn more about it at Omni pod.com forward slash juice box. Of course Dexcom is a sponsor dexcom.com forward slash juice box. Another sponsor of the show is the Contour Next One blood glucose meter. My daughter has been carrying this meter forever. It's absolutely terrific, incredibly accurate, and you can learn more about it at contour next one.com forward slash juice box. If you want to use the glucagon that my daughter carries, you can get ge vogue at GE Vogue glucagon.com forward slash juice box check out that GE Vogue hypo pen. US med is where we get our diabetes supplies us med.com forward slash juice box or call 888-721-1514 They carry all the latest supplies, but check them out. And last but not least touched by type one is a beautiful organization supporting the dreams of people with type one diabetes at touched by type one.org. I'd also like to take a moment to thank in pen from Medtronic diabetes for their support in 2022. They won't be back in 2023. But that's okay. They were a great great supporter of the show in 2022. And one of the reasons why you were able to get the show so plentifully and for free, and while I'm thanking people, I have a new sponsor in 2023 athletic greens. If you're looking for that AG one from athletic greens, a green drink that actually tastes good, athletic greens.com forward slash juice box, there are links in the show notes of the podcast players you're listening in right now, and links at juicebox podcast.com, to all of the sponsors, and they're not a sponsor. But if you go to the T, one D exchange AT T, one D exchange.org, forward slash juice box, join their registry and fill out their survey, you'll be supporting people with type one diabetes, and helping to move diabetes research forward, you also end up supporting the show by completing the survey. So they're not quite a sponsor, but you are supporting the show when you complete the survey. I want to say again, that this podcast is it's a full time job, it is a ton of work. And without ad support, this would not be my job. And today, you would not be hearing this information. And I'm very grateful for the people who support the show. And for the people who support the sponsors, if you have the need. And I have the advertiser, I hope you use my link, because it's actually a huge help. Let's get back to Jake.

Out of pocket costs, is it going to be similar to G six?

Jake Leach 26:22
Yeah. So yeah, basically out of pocket cost coverage? So that's a really good question, Scott. So we anticipate a GS six ng seven will be very similar. In the beginning, though, when you launch a new product coverage is, you know, some there will be some coverage. And then it continues to build over time. And so we've the second we've got approval, we can now start kind of finalizing all of those agreements with payers, Medicare appeals. And so what we we do intend, though, even at time of launch to have some very accessible cash pay options for people whose coverage hasn't quite kicked in there, they can stand at six for, you know, until they have their g7 coverage, or they can switch right over and we'll have some, like I said, very accessible cash paid pricing for them.

Scott Benner 27:07
Can people still soak their sensors with g7? Define soak, they want to put them on and wear them for a few hours before they start them?

Jake Leach 27:17
Yeah, yeah. Now you could do well actually on to be real precise their ID, you can insert a g7 sensor. What happens is though, the second you insert it, it starts the sensor session. So all of that information is being recorded on the display device, or I mean, on the g7 itself. And so you know, it has the 30 minute warmup time, as soon as 30 minutes goes by, after insertion, it's going to start calculating and saving data. When you pair it to it. It'll be up and running.

Scott Benner 27:46
But if some so if I'm wearing one now, and I and I say this one, I don't know it's done in six hours. I want to put this one on now and let it soak. But as soon as I do that, do I lose the first one I'm wearing? Or I can just decide to just watch the first one while they are just losing the life of the second one during that. Yeah, exactly.

Jake Leach 28:07
That's it. Yeah, use the none of the devices, whether it's an insulin pump, or zebra or phone, they don't talk to to CGM to, you know, she says the same time you said you have to you have to switch over. When you're ready to the other one, it's just it's more around the unique feature ng seven as the auto start the second you deploy, it starts session, which is great, because I've talked to customers who would insert sensors and then forget to start their session and then realize, Oh, now I started, I have to wait two hours before I have data. So the g7 is much faster.

Scott Benner 28:38
I've not pushed that button once or twice. Will is this gonna be a pharmacy a DME? Both just one? Oh, yeah, we

Jake Leach 28:46
have customers that get product through different channels, you know, vast majority of get product through the pharmacy. And so we'll continue to push that. But we also support DME for for Medicare and for men and for others.

Scott Benner 28:59
If I'm in a household where multiple people have type one diabetes, can I follow a G seven and a G six on the follow up at the same time? Yes, you can. Excellent. See how easy this is tick. I can't believe people are so kind like just yesterday, I was like give me questions. I have enough questions here. We could make a training manual for everyone. So can alarms be silent for certain durations of times? That's going to be a no right now. Right?

Jake Leach 29:24
Right. It's basically the ability to sounds Alerts is just like GS six, but we are we do want to bring that feature. It's on the short list of things to put into the US product. We're working closely with FDA to get them comfortable with it and then we'll get it out very quickly.

Scott Benner 29:40
Your new readings every five minutes. Do you ever consider doing it? With I mean every minute or why is it every five minutes I guess.

Jake Leach 29:51
It's basically it's kind of a it's a balance of a lot of things like like almost any kind of engineering design project. There's a you're balancing multiple things So the system measures glucose continuously all the time, it's not like every five minutes, it takes a measurement, it's measuring the entire time you're wearing the sensor, it's just every five minutes is when the glucose reading is communicated between the wearable and the display devices. And so that's kind of a balance of, you know, battery power. As well as you know, the frequency of glucose change all of those things around five minutes, you know, we've we've contemplated doing it more frequently, but we haven't found a specific use case, where it's, it makes sense to do that, and change the way the whole system works. But it is something that we've, you know, we've talked about in the past, but five minutes, we feel pretty comfortable with it, you know, and with the extremely minimal lag time of the sensors. Now, it's it's much less of an issue than it was, you know, years ago when it took quite a while to see the glucose change in your CGM after you made a treatment.

Scott Benner 30:56
Right. So as time goes on that kind of adage of like, the next column is showing you something that happened in the past. It's becoming less and less of the past really. Yeah, yeah. A piggy back to that question. On the follow up, it'll tell you basically, it's been three minutes since the since the number changed. And I know for parents, like sometimes you lay in bed going Okay, one more minute. Let me just refresh this app one more time. Will you ever put that countdown on the user's app?

Jake Leach 31:26
Ah, that's a good. That's an interesting idea. Well, I don't know if our team has contemplated that. But basically add, so the user knows when that things come on. Yeah, it's a Yeah. Because when you I guess, when you're sitting there, you've made a treatment. And you're basically trying to see the glucose change. I understand. Yeah, exploring a

Scott Benner 31:45
low blood sugar when you're sort of like, yeah, tests do I drink? Do I eat like that kind of thing? What's the Bluetooth range from the g7? To the phone? Is that the phone?

Jake Leach 31:56
Yeah, it's the same as G six. Yeah, it? You know, it depends a lot on the, you know, the environment that you're in and how the distance, right? It's really good when it's just like, line of sight, you can get, you know, well north of 10 feet. But, you know, in crowded environments, it's less that, but it's the same as G six.

Scott Benner 32:14
Since it's been out already in Europe. Are you already working on things that you've seen? Like, have you? Are you making adjustments on what you're learning already? Yeah.

Jake Leach 32:26
Yeah, we've, we've got quite a few. I mean, many of the, you know, with any product, you do an initial launch, and you're always improving it, you're learning things about, you know, the way it's manufactured, you learn ways, but the way it performs. We haven't seen any surprises in the US launch in terms of product performance. And we have we have a number of updates, that will be cutting it over time that will basically be invisible to users. But you know, continuing to improve reliability. And, you know, just meeting all the needs of users. So yeah, I'd say the most exciting thing we've learned from our LRS launches that more than half of the customers are brand new to Dexcom. So they haven't, they're not just upgrading from G six G seven, they're actually new users coming in to Dexcom family. So it really helps us. You know, reiterate the fact that G seven is a really good platform for expanding the use of CGM.

Scott Benner 33:20
Is there been any change on compression lows? Do you see fewer with the new design?

Jake Leach 33:27
Um, you know, we haven't done a study that compares that exactly. But what one of the things that I've talked to folks about that of Warren G seven, as well as kind of experience myself as the size of g7 allows you to move it around a little bit more in terms of the locations where you can wear it. And that seems to be the best way to avoid compression laws is to find a place that you aren't compressing as often. Yeah, we're gonna for myself, it's I went up on the top of my upper arm that tends to help me

Scott Benner 33:57
okay. Okay, so Canada, Australia, this year, not not 2022. But do you see them in 2023? Having g7?

Jake Leach 34:07
Yep, very, very likely. They're both of those are their, you know, their approval processes, right? Regulatory submissions. g7 is already in New Zealand, and so open to bring it Australia soon. So yeah, I mean, we're, the vast majority of the countries will switch over to g7 in 2023. And then there's a few of the longer regulatory cycles that will take us into early 24.

Scott Benner 34:31
So somebody asked this question, what, it's the internet. So I don't know. I hadn't heard this. But are you seeing any lost connection data on g7 in Europe, to the point where you think of it as a problem?

Jake Leach 34:44
No, no, I think it's similar to G six, it can happen. And we actually do have technologies in our pipeline that we've been working on, that we implemented on G six some of it and we're also looking to do it on G seven to even further enhance the Bluetooth range and capabilities. But I think one of the things with a new product anytime you experienced something, it's like, oh, is it the new product that's causing that? So? It's no, it's definitely not a problem. But we do something that we are striving to improve it always.

Scott Benner 35:15
Yeah, I never know the difference between like, something someone heard, and now they're asking, and you know, I'm pretty clued into this space. And I was like, I hadn't heard that. So I think it's obvious I saved the big questions for the end. And so here they are. I know this isn't your company, and but you're gonna have as much insight to it right now is anybody that I have access to talk to on this day? So how soon until people who have just decided I want to use on the pod five or people who using control like whew, like when they're they're all at home, like looking at their sensors, trying to decide like Toyota or G six one more time? Like, how soon do you expect those companies? I mean, you guys must have conversations about it. Right? Like, when is February to work with that stuff? Yeah, we work

Jake Leach 36:02
super close with those partners, to ensure that the g7 is the integration goes smoothly. So they've both both tandem and solid. And our other partners have been working on the g7 integration for quite a while because the technology has been around. And so they, you know, when it comes to actually launching those upgrades for users, it's really, they're in control of the timing there. Now that we have the FDA approval for use with AI D. It's really around them doing their upgrades. I think their public comments, a tandem, I think is talked about middle of 23. So that's not too long after we launch, and then I think insulates a little they're a little bit farther behind that. So but they they've made and they continually update their public comments around when they'll have that compatibility. But the trust me they're working very diligently on getting those those systems upgraded.

Scott Benner 36:53
I wouldn't imagine that they're taking their time. Jake, I have to tell you, I know we're going your institutional knowledge of Dexcom is it's incredible. Like I just out of order. We I didn't send you these questions. I'm rattling things off. I'm jumping from topic to topic. And you're like that, yeah, this this that? Yeah, like, it's very impressive. So please, please work there for as at least as long as I have this podcast. Because this was very easy and just full of information. And I'm gonna pat myself on the back for getting through that many questions in 30 minutes, because I feel like my head is spinning down like, look, I'm watching this list window in front of me. And I'm like, No, don't ask that as this one. That's that one. So anyway, I congratulations for me. And for everybody listening, everybody said thank you. It's a big deal. We were all really excited yesterday. And you know what I'm, you know what, you know, what people are gonna want you to do next go make Dexcom GA right now, Jake, you can maybe take a couple of days off, but then we would like we're working on it. We'd like to see it as big as the head of a pin. And I'd like to be able to wear it on my watch. If you don't mind. Go ahead, get going.

Jake Leach 37:56
lots lots innovation still to come. We're not nearly done. So yeah, appreciate the time, Scott. It's been great. And I look forward to bringing g7 to us here very soon.

Scott Benner 38:07
You guys push this space forward in a way that just wasn't happening before. Dexcom. And I'm there. I've been around this a long time. I'm never gonna forget, you know, when a new meter every three years seemed like a big deal. So thank you. Thank you very much. I hope you have a great night. Appreciate it. Thanks,

Jake Leach 38:23
Guy Garth. Yeah.

Scott Benner 38:30
Well, I'd like to thank Jake for coming on the show so soon after the announcement. And of course, thank all the people who listen to the podcast for the great questions. How did I get them? You might be wondering, well, I got them. In my private Facebook group Juicebox Podcast, type one diabetes. on Facebook. It's a private group with over 32,000 people in it. People who live with type one diabetes, type two their parents of people with type one, they have type one themselves. The gamut is run in there. You don't even you don't even have to say anything to learn in that group. It's amazing. Juicebox Podcast type one diabetes. Thank you all for the great questions. I hope you enjoyed this episode. I hope you check out some others. Tell a friend share this episode with people. There's a Share button in your podcast app or you can if you're listening online, send somebody the link. When you share the show, you're helping it to grow. And the truth is that's that's the crazy best part of this whole thing is you guys and how supportive you are. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.