#456 So Many Issues

This is a story of resilience

Caitlin's daughter has type 1 diabetes and much more.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or their favorite podcast app.

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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 0:10
Hello, everyone, and welcome to Episode 456 of the Juicebox Podcast. Yes, that's right. Episode 456 is here for your pleasure. Today we speak with Caitlin. I don't want to tell you too much about this because the notes I made for this show just said, Let me find it for you real quick. Like I make a little note for myself after I do the Edit, it said Caitlin. edited, meaning I'm done with it. So many issues. Please remember while you're listening to those issues that 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, or becoming bold with insulin.

This show is sponsored today by the glucagon that my daughter carries g vo hypo Penn Find out more at Gvokeglucagon.com/juicebox. This episode is also sponsored by the Contour Next One blood glucose meter. And you can find out more about that meter and much much more at ContourNextone.com/juicebox. And please don't forget to check out the T one D exchange T one d exchange.org. forward slash juice box. I use the word more. I almost said more. I use the word more and more than I wanted to while I was talking about the Contour Next One, but it's a really great meter. So don't let my horrible alliteration stop you from going to Contour Next one.com forward slash juicebox.

Caitlin 2:14
My name is Cate. And I'm the mother of three kids. My oldest of whom is type one diabetic, amongst other things, but I don't really know what else to say I'm you know, typical busy mom in this super crazy time trying to, you know, figure out how to keep everyone healthy and alive.

Scott Benner 2:35
That seems like all of our lives pretty much.

Unknown Speaker 2:37
Yeah, pretty much. Hi, I'm

Scott Benner 2:38
Caitlin. And I'm just like all of you.

Caitlin 2:41
Yeah, exactly. I mean, I don't really know, I listened to the podcast, and I wasn't. I kind of felt like intrigued and I wanted to talk to you because I mean, everyone's story is a little bit different. And I know in our case, it was it obviously flipped our world upside down. But it wasn't as much as I've heard from other parents because I guess we'd already had moments where our world was completely flipped upside down before. And I thought that's what was interesting to me. Okay. And I kind of wanted to share.

Scott Benner 3:16
Do you have any autoimmune issues or your your? Is it your husband or sperm donor? I don't know who that guy is. Is he? You know, are you married? I guess?

Caitlin 3:25
Yes. I'm married. Okay, gotcha. Almost, almost 12 years, or 13. I've lost track at this point after 10. It's like what?

Scott Benner 3:33
I got you a card for our anniversary. Wait, why?

Caitlin 3:37
I don't even think honestly, last last time. Last anniversary. It was like Happy anniversary. I made I made a cake.

Unknown Speaker 3:43
Did you That was nice.

Caitlin 3:45
And that was it? Because we were just both too tired to do anything.

Scott Benner 3:50
That's totally not romantic. My last anniversary was Hold on a second. I think 24 years. It was, by the way, it was two months ago. And I'm not I'm not 100 I guess definitely 24 years. Let's just say it was definitely 24 years. And my anniversary gift from my wife was I came downstairs and she said she goes hey, I'm like yeah, she goes. I really did want to get you a card. I said what's that just, I just didn't have time. I was like, Oh, can I actually found that to be sweet? I was like, Oh, she was considering getting a card out my sister. So the cake will disappear soon too. But But my point is, is that any Is there any autoimmune at all in the history of your family line? either side that you're aware of?

Caitlin 4:42
Um, I guess the only thing I know of is my sister who has a thyroid issues. Okay. And other than that, there was nothing.

Scott Benner 4:51
That's a yes. So was your sister. Do you know much about it? Was she hyper thyroid? hypo?

Caitlin 4:57
Yeah, and she was diagnosed in her Mid 20s,

Unknown Speaker 5:01
gotcha.

Scott Benner 5:03
any real issues managing it? Like, is she in a puddle on the floor somewhere? Are she

Caitlin 5:08
functioning? Well, she's functional. You know, she has two kids of her own. And I know that time was rough because your thyroid is just very different when you're pregnant. But other than that, I think, you know, a few adjustments here and there, but everything usually works. Okay.

Scott Benner 5:23
Well, she had two kids. So she really one of those kids, where she's incredibly careful, one of the other but

Caitlin 5:30
she wanted those kids she definitely did. She worked sounds like she worked for them. Like to I like to say that. You know, if I pushed her a bit, maybe,

Scott Benner 5:39
would you do you had a kid? And she's like, Oh, I didn't know we were in a race.

Caitlin 5:44
Well, you know, a little sibling rivalry. I like to joke about that. But no, I mean, I'm the younger one. Now by two and a half years, and I had all three of my kids before she had one. Oh, so maybe there was a little pressure, but I don't think it was that. I mean, you know, her husband was in school, and he wanted to finish school before starting a family. And I was just like, why would I wait?

Scott Benner 6:06
Well, you don't have to wait for her to go first. Do you

Caitlin 6:08
know exactly. Why would I wait, like I couldn't go to school and be pregnant? What are you talking about?

Unknown Speaker 6:13
Well, you did it. Congratulations.

Caitlin 6:16
But why? That's the question. Yeah.

Scott Benner 6:18
I mean, what did you really win? Honestly, you won this story. So here we go. So what was your daughter? Right? Yeah. And how old is she now?

Caitlin 6:31
She is 11. Almost 12.

Scott Benner 6:33
Okay. Real quick. Before we start, you have the thing Jenny has sometimes when you're making a point, you're tapping something, which is cool for you, but don't do it for me. Okay. I'm not tapping. You're not having anything you're not doing like though. No, no. Okay. All right. Well, then I'm having a stroke. Call 911. This is my address.

Caitlin 6:52
It might be my microphone. I tested it yesterday, but I don't think there's any noise on it.

Scott Benner 6:56
Or you're super clear. I'm sorry. It just felt like you were tapping something. But okay, but Jenny's gonna stay more still. I

Caitlin 7:01
was picking my fingernail. I'd have it.

Scott Benner 7:04
Wouldn't it be amazing if that was it? I cracked my knuckles the other day. And then when I went back to edit, it was there. It was just like, click like, like, give us a call. Geez, I'm gonna stop doing that.

Caitlin 7:14
range was sounds that the microphone picks up?

Unknown Speaker 7:16
Yeah, Yeah, no kidding. I'm sorry. There it was, again, you're not moving or anything's happening?

Unknown Speaker 7:22
No. All right.

Scott Benner 7:23
Okay. Don't worry about it. I'll stop thinking about it. We'll keep going. Because your kids got 8 million issues, and we need to get through all of them. We don't have enough time for me to be dilly dallying about other stuff. So what was the first thing to come up? And how old was she?

Caitlin 7:37
Well, the first thing was at four months old.

Scott Benner 7:41
Holy crap. You didn't choose your first one.

Caitlin 7:45
Yeah, I just waste any time on that one. I mean, they everyone likes to say I didn't waste any time, you know, getting married and having kids either. But no, I was feeding her her cereal. The first time I fed her the cereal that you know, just add water and you mix it and it's got whatever. And she was doing what any baby would do dribbling it mostly over her chin. But some of it got in her mouth, I assume. And after I fed her, I was cleaning her up because they make a total mess. And I was noticing like something was weird. And she was looking kind of read. And she wasn't happy. And like something in the back of my head said there's something wrong here. And you should maybe take her to the doctor. And I was like, No, no, I don't have to do that. There's nothing wrong. It's like it's just cereal. And like maybe five minutes later, she was getting cranky. And I'm like, No, what, you know, I'm going to be the Paranoid parent. First kid, I'm going to go to the ER, yeah. And I put her in the car and I drove to the ER. And that was like, maybe 10 minutes away from my house. And I picked her up by park the car, picked her up in my arms and walked into the emergency room. And as I walked in, she was what she was screaming at that point. And as I walked in, she went gray, pale and lost consciousness. Oh, kidding. And I went up to the nurse. I'm like, I know, I'm supposed to take a number but like there's something wrong. And she's like, what happened? I'm like, I fed her cereal. And now she's like, there's just like, that's not normal coming here and they call the code. Wow. And they rushed her into the back and stuck her with a ton of needles and put an IV in and I was like in total shock. And so that was my first like, brush with death moment with her.

Scott Benner 9:31
Your first one. Yeah, there gonna be more. Oh, there's more because that almost killed me. I just

Caitlin 9:38
Well, honestly, I thought like I was super paranoid. It ended up that she has an antibiotic allergy to dairy. Okay, and because the cereal had milk powder in it, that she had a reaction to it. And it was really bad. So I was given an epi pen for my four month old baby and told that here's a console for an allergist Don't give her anything with dairy in it, and you can go home.

Scott Benner 10:04
Wow. Okay, listen, let's take a short pause here because I don't do this often but let me just get a piece of clean paper on my notepad and put this off to the side where I can get to it because I have a feeling I'm gonna lose track. So hold on a second. Dairy for months. First almost died. Got it. All right now. You, you call your husband from the hospital or how does that go?

Caitlin 10:31
Well, he was there when I was feeding her. So he knew I was going

Scott Benner 10:35
Oh, did but did he come to the hospital?

Caitlin 10:37
No, he wasn't there that time. He is he watching sports going to work? Or? I'm not sure. Anyway, I called him I think he came right afterwards. Because you know, even when I left I'm like, I'm probably just being paranoid, but I'm gonna go take it just to be just to be sure. And I'm glad that I left at that moment. Because had that happened when I was in the car. I don't know if I would have arrived to the hospital with a baby that was alive in time. That's because her blood pressure went just it bottomed out. Wow, her her heart, like almost stopped basically. And, I mean, they brought her back really quickly. And it seemed like okay, that wasn't so bad. You know, she's fine now. I mean, I left like, that night from the hospital. They watched us for the whole day and put her on monitors and everything. And then once everything was finally sent her home, so it was like okay, no, I have an epi pen. I know how to use it. I used to teach first aid and CPR. So I know how to do this. I got this like no dairy. What's you know how hard to find?

Scott Benner 11:35
Yeah, by the way, I would have never had another baby If I was you. Like that would have been it. Um, but

Caitlin 11:40
actually, that did come into the conversation. Yeah, when we found another one. But the other one happens so fast.

Scott Benner 11:47
So you know what I'm really, you'll never know for sure. But I think after you left for the hospital, your husband immediately called his mother and said, Mom, I don't know what to do. I think Caitlin's crazy. She took the baby to the hospital because she gives the baby cereal. The Baby got a little red. And now she's gone. And yeah, he'll never admit that to you. If he ever had that thought in between the time you left for the hospital and when he found out what happened. But but that's well listen. Good for you. I mean, a lot of this podcast is talking about trusting your instincts. Right? So Exactly. You really did save her life. Do you hold that overhead? Now she's she's getting older.

Caitlin 12:27
Oh, I have a lot more to hold over her head. So that that's like the minor thing though.

Scott Benner 12:31
Okay, so seriously, so then you go home, you just avoid dairy. Does that go well? Or did you? I mean, did you run into more problems?

Caitlin 12:37
I mean, it's so hard at first because you don't realize like everything that has dairy in it. And it's not just like everyone's like, Oh, you know, you can't eat lactose? No, but it's the protein and dairy. And it's an everything like all those whey protein powder shakes, that's dairy powder, that's dairy protein. They put whey powder in hotdogs to increase the protein content. They put it as a preservative in some meats, like it's everywhere. So it was kind of like, wow, I have to go back to relearning how to read labels and calling companies and figuring out what's in their food. And did it come in contact with something because like it, it was so nerve racking. It's to begin with, and I had to find the what we'd like to call the hippie store that has all the green organic everything. Yeah, because the cereal that the baby cereal that I used for her could only be bought at those stores. No regular grocery store had it.

Unknown Speaker 13:34
Oh my god. And so our learning curve, how old you are at that moment.

Caitlin 13:39
I was I guess 23

Scott Benner 13:42
Oh, holy. I didn't expect to curse. But that's crazy. 23

Caitlin 13:49
Yeah. Yeah. I said why wait? Yeah, but you have a little background. My husband's 13 years older than me. So there was a son of like,

Scott Benner 14:01
a second. Caitlin. How do you work this out? What's going on? How long did you date? Alright, hold on a second. Everybody.

Unknown Speaker 14:06
Going back.

Unknown Speaker 14:09
We get to come up.

Unknown Speaker 14:10
I knew it would come up. You

Scott Benner 14:11
brought it up. Caitlin. By the way, Caitlin said in one of her emails to me, I'm craving adult interaction. I thought oh, she's gonna be great on the podcast. So you're good spill. How did this happen?

Caitlin 14:22
And I'm craving adult interaction so much, so much more since COVID. Exactly. To specify. Well, I met I met him at a friend's birthday party. And, you know, at that time, I was like, 21 and he was 34. So I

Scott Benner 14:41
just thought it'd be fun.

Caitlin 14:44
As matures women, I don't know if you've noticed that. Oh, we kind of hit it off.

Scott Benner 14:48
You let me take another sideline with you for a second standing in my yard. The other day, I see my neighbor who's like 63 and we're talking and out of I don't know where the conversation went. But I said it was like, you know, I really think I'm turning into a person. He goes, what I said, long, I just turned 49. I said, I feel like I'm, I'm starting to mature, like I really do. I think in the last five years, I'm really pulling it together. And I wasn't kidding. I really meant that, like, I think I'm finally forming into a human being. So I take your point, so you had to reach up into the 30s to find somebody who could talk to you like they were 21.

Caitlin 15:23
Yeah, pretty much. But also, I mean, I had a lot of life experience at that point, probably more than most.

Unknown Speaker 15:29
So what does that mean?

Caitlin 15:32
I was in the system for a bit before I turned 18. And then, you know, I'd gone to foster homes and such, and I'd had jobs and I got into a car accident that kind of made me realize that I had to do something important with my life and kind of grow up. And I'd actually met him like four months after my car accident. It wasn't a huge car accident. But still, it made me think

Scott Benner 15:57
this episode is gonna be two hours long. So my car basically, in the system, you met the foster system?

Unknown Speaker 16:04
Yeah. Did you? Well,

Unknown Speaker 16:06
I mentioned your parents,

Caitlin 16:07
Dad near the end of it, but was followed by a social worker for like three years.

Scott Benner 16:13
Because something someone did to you or because something you did to something else. Do you end up with

Caitlin 16:20
a hard time describing it really, I don't know. I just, I didn't get along with my mother who I lived with. And so we had some issues with running away because she just didn't get me. And then I ended up like, my dad wasn't sure he could take me. So I ended up in a group home, doing a little bit of time in juvie, but mostly because they just didn't know what to do with me. Yeah. And every time they put me somewhere, I would do something bad and get kicked out. So they're like, well, you're going in there because they can keep you locked up in there.

Scott Benner 16:51
Well, part of the country.

Caitlin 16:53
I'm in Canada.

Scott Benner 16:55
Oh, my goodness, this is so wrong. Canadians are supposed to be nice. Let me write that. Well, wait, I'm just saying that those people were nice. But you're apparently you and your mom didn't get along? Well, I thought if there was a fight in Canada, that it just devolved into. Eating maple syrup with a spoon and everybody laughing. That's not what happens.

Caitlin 17:14
No. And I didn't take out my dueling glove either.

Scott Benner 17:18
I've never seen a Mountie

Caitlin 17:20
our personality is kind of never dived. And I I don't know, I don't I don't really want to go to No, I'm not asked don't go

Scott Benner 17:28
any farther than you want to. But I hear you had problems with your mom, you ended up in that situation. You wrecked the car, I'm assuming under some sort of influence. Am I right? No, no

Caitlin 17:38
actually just drove it. I was just driving a little bit too fast on an exit ramp and my tire blew out. And I wrapped it around a pole at 70 kilometers an hour. And luckily, it was the passenger side that hit first because the passenger side was in my lap.

Unknown Speaker 17:54
Oh my god.

Caitlin 17:55
So if I'd hit the other way, it probably would have been a lot worse. I didn't break anything. But looking at it afterwards. And, you know, I was like, Okay, wait, like, I need to figure something out and find a plan for my life. Because just going to work and going home. And that's just not enough for me, I need to do something worthwhile.

Scott Benner 18:14
Wow. So that was your moment where you're just like, Alright, I'm going to, I'm going to be a productive part of this world. And for myself, maybe and if not for everybody else.

Caitlin 18:23
Yeah, and not reproductive. That wasn't the original plan. I gotta say, just because, you know, if you like you had a car accident, then you met a guy and you had a baby. It didn't quite go exactly like that. Well, let's

Scott Benner 18:34
get back to this party, Where, where, you know, the superstar hits you up, and you're getting along and everything and how you're married in a couple of years.

Caitlin 18:47
Yeah, it was actually really fast. I don't know, we just had a pretty good connection right away. We conversation was really easy. We both had different, like very different life experiences. But we were both kind of in the system for a bit and had trouble with our parents. And, you know, he was in the military before. So he had a lot of Army stories and stuff, which was cool. And we realized when we were chatting that, you know, we lived pretty close together. And we have similar goals in life. And we just didn't start off with the intention of dating. It was just chatting, and then we went to dating and then I don't know, it took like two months for me to move into his house. Because I mean, at the time, I was just living in my dad's basement. So I mean, I was happy to get out of there. And then then, a few months, I guess into it, he proposed maybe nine months after we started seeing each other.

Unknown Speaker 19:49
Wow, Caitlin,

Caitlin 19:50
and then, you know, a few months after he proposed I got pregnant. And then we're like, okay, so our plan to get married the year later just got pushed up a year, right. And then We planned we planned a wedding in like two months.

Scott Benner 20:02
Wow. And then some handful of months later, you really are a very mature person standing in a hospital with a baby who's unconscious?

Caitlin 20:13
Yeah, exactly.

Scott Benner 20:15
Probably maturity another 10 years. That moment. Hmm.

Caitlin 20:18
Wow. Yeah.

Scott Benner 20:19
Do you know what I mean by that? Like, I feel like that sometimes like there's sometimes things that happen, they just level you up, I guess for you know, I don't know how to say it otherwise, but you just go from one level of understanding maturity, whatever to another one in a split second. And I would think an unconscious baby would would do that for you. You probably went from 23 to 30. In that afternoon,

Caitlin 20:41
I feel like it like I'm 35 now but I feel much older.

Unknown Speaker 20:45
Yeah, yeah,

Caitlin 20:46
I have that feeling. You know, I've been through so much. No, one thing that though, like, especially big allergy like dairy. One thing it does is it teaches you that you have to start from scratch and I never really was a big person that cooked. I liked the pre prepared things that I could just toss in a pot and mix the sauce in with the pasta or ordering in we used to eat out or order in a lot. And all of a sudden all of that was gone. Yeah. So I had to learn to cook. I had to learn to bake because I was like, Well, my kids first birthday. They're going to need a cake. And I can't buy a cake from a bakery. I can't buy a cake from a grocery store because they're all made with like dairy. I need to find something. So I learned to bake. I couldn't use one of those boxes, the cake boxes. Okay. And yeah, so all of a sudden, it was just like, I had to grow up really fast. So

Scott Benner 21:37
you're pretty clean eating household then right? But you you you know everything that's in your food.

Caitlin 21:42
Yeah, knowing it and caring about it are two different things, though. I gotta say. How do you mean? Well, I know what's in the food. And just as a little background, it's not only dairy that she's allergic to, we found out through multiple other reactions. She has a few other allergies. And we found them out usually all in the same way. involving you know, epi pens and emergency room visits and stuff. But we like she has a lot of food allergies.

Scott Benner 22:11
What other things is she allergic to? Or would it be easier to list the things she's not allergic to?

Caitlin 22:16
Well, they're just, they're just major things. I mean, she's allergic to eggs.

Unknown Speaker 22:19
Okay.

Caitlin 22:20
Also, she's allergic to Sesame. She's allergic to peanuts. And she's allergic to beef blood,

Scott Benner 22:30
if that makes sense. Beef blood so she can eat well cooked beef.

Caitlin 22:34
Yes. But sometimes it gives her stomach issues. But nonetheless, she can eat beef in theory like a spaghetti sauce. It's fine. We're so good. Because I've learned to cook with horse meat. And I really didn't like horse meat.

Scott Benner 22:47
Hold on a second. Write that down. is me so? Beef blood, because there's a protein that gets cooked out.

Caitlin 22:55
Exactly. Okay. It gets transformed when it heats to a certain temperature.

Scott Benner 23:00
What What about eggs? Do you know what her interaction her bad interaction is with all these things? Like you said protein for there's a protein in the dairy one and the beef is there. Like what about eggs, sesame and peanuts?

Caitlin 23:12
Well, it's the the sesame oil yet again, it's all a protein. So there's a protein in the sesame oil that she's allergic to. For the eggs. She's allergic to it. The the yolk the white end when it's cooked, because some people can tolerate cooked egg but we tried that and it didn't work. Okay. We tried it at the hospital. Just clarification the allergist did a test about it and she failed the test.

Scott Benner 23:35
Well, this is my this. You knew what I was gonna ask you because I'm like, how do you test and you test every food? Like is is like the first five years of our life just like okay, touch this. Get in the car. Oh, wait, you're okay. Get back out of the car. Like how do you test the food like that?

Caitlin 23:54
Well, it was a nerve racking for the first I mean, the dairy was one thing. And then at nine months, she was nine months old when we introduced the egg. And she had the reaction to that. And after that I got like, almost like PTSD. And I don't like overusing the term but I woke up in night sweats, wondering if she was alive. So I'm gonna call it PTSD because it took me a few months to get over it. But I was always worried every time I introduced a new food that the reaction would wouldn't appear instantly because it can take like eight hours. And I was worried that she wouldn't be alive when I went and got her in the morning because she would have had a reaction overnight. And she's just a baby. She can't even get out of her crib.

Scott Benner 24:34
So every time you feed or something new that happens again and again and again over and over and over and it looks like five times. You came true. Did you end up in the hospital each of those five times eggs? sesame excetera

Unknown Speaker 24:50
Yes.

Unknown Speaker 24:51
Same experience was

Caitlin 24:52
she out? Um, it wasn't exactly the same. It strangely the the egg one was like Just projectile vomiting. I can't really say it any worse. And she was red and swollen everywhere, but she didn't like pass out or lose consciousness. But we had the epi pen at that point which made it better. Okay. And I mean, giving an epi pen to a baby isn't. It doesn't feel right. But it worked. And the first after the first time I did it, it was like, Okay, I can do this epi pen, Call an ambulance go to the hospital. Wow, I'm

Unknown Speaker 25:25
sorry.

Caitlin 25:26
That's so that was I mean, that was her childhood.

Unknown Speaker 25:30
Really? Kind of yours too.

Caitlin 25:35
I was I was I lost my childhood long before that, at that point. Well, then whatever sounds sad, but actually, I don't mind. I don't look back and say oh, what if? Because, you know, it is?

Scott Benner 25:45
It is what it is. So I don't want to dig too far into this. But do you enjoy being the kind of parent you wish you would have had?

Caitlin 25:54
Yes. Okay. I guess I do. And sometimes I feel like, I'm not doing the best job that I could or I'll notice myself saying things that I promised I would never say to my own kids when I before I had them. But I think we all do that. Like oh my gosh, I sound like my mother. Yeah, I think at some point, yeah, I've

Scott Benner 26:13
done a few things that I think my dad did. And but Kelly's good at calling me and being like, Yo, what are you doing? Man, you know, and stopping me pretty quickly, which is very helpful. Because in the moment, sometimes those things feel like they feel right, because they're kind of all you know. Okay, so Hold on. Let me clear my head for a second because my I just had three questions. They take us in three different directions. Um, does she have anything else besides food allergies?

Caitlin 26:45
Well, she has diabetes.

Scott Benner 26:46
Yeah. When did what came next? I guess after the food allergies should be the question.

Caitlin 26:51
What we figured out all the food allergies. And then in grade one, we figured out she had ADHD, like really badly, and I had my suspicions. How do

Unknown Speaker 27:01
you figure that out?

Caitlin 27:03
The teacher said she couldn't sit down for more than 30 seconds at a time. And she flew off the handle very quickly when anything was like went not to plan. She also had like tactile issues, like she doesn't tolerate certain fabrics of clothing. Or like seams in her socks. She doesn't like those things. Unfortunately, she also doesn't like the feeling of a medicalert bracelet or any of those medical IDs. And we've tried lots, but she won't wear them.

Scott Benner 27:38
Is ADHD considered autoimmune or is is our

Caitlin 27:42
separate. So that wasn't really autoimmune. It just kind of made everything a little trickier. Like for the food allergies, she had to know not to touch anyone else's food. Because she always had her own food. Yeah. But when you don't have like great self control, and you don't think through your actions.

Scott Benner 28:05
It's hard not to want to throw a medium rare steak at your siblings. I hear what you're saying. Yeah.

Caitlin 28:10
Well, I mean, we did have a case where she grabbed the milk cup from her sister when she was younger. And we she knew that she wasn't allowed to, but she just picked up the wrong one, even though it was a different color glass. And she drank out of it. And that was another ER visit.

Scott Benner 28:26
I tried to imagine the military like, scenario that happens, like she grabs the milk and everybody just gets up going to the hospital and then everybody just goes to their positions. And is it just like a very orderly situation? Get that you get the epi pen, I'll get the car running. I mean, you know, one of these got to clear the caribou out of the driveway so you can get moving and stuff like that. And so

Caitlin 28:52
all the 10 feet of snow out of the driveway.

Scott Benner 28:54
Yeah, I mean, gotta call a Mountie. There's a lot to do.

Caitlin 28:59
Yeah, and the Mountie has to saddle his horse.

Scott Benner 29:02
Listen, you're making my point for me. A lot of problems really, you got to wait till the third periods over. What if it goes into overtime?

Caitlin 29:11
We can stream on our cell phones up here. You know, we can't leave

Scott Benner 29:15
now. Pawel bored, he's got a hattrick Alright, so the ADHD can lead to issues like that. Is there something to do for the ADHD?

Caitlin 29:28
She has she's on medication for it, which helps her a lot during the day to concentrate there are side effects to it, which are not ideal, but we have to deal with them. Because the alternative is that she doesn't go to a regular school. It was at the point where the school was like she you have to get this under control or we were going to have to send her somewhere else because we cannot handle her.

Scott Benner 29:50
Okay. So the medications so that she can stay in school but you see side effects that you don't like what are those

Caitlin 29:58
mood changes as She's like her behavior is better, but she's not as happy. Okay, she's in, she's still very oppositional that doesn't really help with the opposition. And it cuts her appetite. Very like a lot during the day. You should

Scott Benner 30:16
put her in a car and drive it into a pole.

Caitlin 30:19
I don't think it works at that age, though.

Scott Benner 30:21
Okay. Well keep it in mind as a backup plan. Stranger as right. Alright, well

just keep in your head. You know, it's not it's not advice, but it's a it's an idea. Okay, so

that's unpleasant, and I'm sorry about that. What comes after the ADHD?

Caitlin 30:44
Then it would be the type one,

Unknown Speaker 30:46
then you get diabetes? Yep. How old when that happened?

Caitlin 30:50
Um, that was two years ago, actually. Almost exactly. So September 2018.

Scott Benner 30:57
When that happened? Did you just think yeah, of course she had IV. Or, or what? Were were you in the in the ability to accept things as they come?

Caitlin 31:09
I think actually, that's, that's funny, because that's what seemed to surprise the doctors so much. Like, because just the way we accepted it. I mean, not to say we were happy about it. And we weren't like, Oh, well, of course, something else is going to go wrong. We were We were upset. But at that point, we were like, okay, but this is our life, and we have to deal with it. Just like everything else that's changed in our life. It's just a little more. So you know, what's it? I mean, it is a big deal, but at the same time, like, I'm not gonna trade my kid in because they have medical issues, right? Which is the funniest thing like, Oh, well, how do you do it? I get that all the time. How do you manage? Well, what's the alternative? You know, it makes me feel like like, what's the alternative to managing my kid dies? Yeah,

Scott Benner 31:52
right. I'm not gonna do I can't not do it. But it makes me feel like, you know, those old war movies where the young guys are huddled in the, you know, huddled with their clutching their gun and crying. And there's some Western guy who's just wandering through while people are shooting and shelling, like, just like, whatever. This is how it goes. People shoot at us, and doesn't seem to flinch. It sounds like you're just you're hardened at this point. You just, you can deal.

Caitlin 32:19
Yeah, I think that's it. Like, really. I mean, we had our suspicions that were weird things that were going on. At first, I thought it was the ADHD medication she was on. Like, she had times where she was just like writhing on the floor and screaming that she wanted something, which was super out of character. I mean, even for an eight year old.

Unknown Speaker 32:43
When water,

Caitlin 32:45
like water or just that, like, I don't know what to do, I need to run but I don't want to run I need to run but I don't want to run. And just like I don't want to go outside. But I want to go outside and just this total, like need to move

Scott Benner 32:57
was the most was the that's interesting. Do you think it's possible that the effects of the high blood sugar was fighting with the ADHD?

Caitlin 33:07
I'm thinking so actually, like looking back on it, I thought it was just that she was going through a hard time with like adapting to a schedule change or whatever, right. But looking back, I'm thinking like at those times, her blood sugar was probably really high. And we just had no idea. So she felt terrible,

Scott Benner 33:23
couldn't move. But our brains telling her we can't sit still.

Caitlin 33:28
Yeah, because it needs to burn off energy. Because she had like the excess of sugar. Like I think that's what it was, but and it only happened occasionally for maybe like two weeks. And then we went on vacation. And we went camping. So for two weeks, she was running around all the time. And we were outside at the beach in the water and like snacking constantly, but at the same time like burning off stuff.

Scott Benner 33:54
But you're in Canada, how do you go to the beach? Is it just like icebergs and like some sand and with rocks?

Caitlin 33:59
You know, Nova Scotia is really close to Maine. Oh, I

Scott Benner 34:03
see. You're not Antarctica. I don't I gotta get a map, I think really take a hard look. I can actually

Caitlin 34:12
if the border were open, I'd be able to drive to the US in less than two hours.

Scott Benner 34:16
Oh, yeah, your kid could run there. 90 minutes. Just so you know,

Caitlin 34:20
is a lot faster than me. And I'm not proud of that.

Scott Benner 34:24
somebody tried to get my son to go to Maine to go to college. And he took a call with with a coach and he got off and he's like, the guy was trying to sell me on the idea of they go hunting. He's like, I don't want to shoot anything. I don't want to have to hunt just to play baseball. And I was like, I don't think you do and he goes to really good school. And I said yeah, I'm like, I think it's in Canada, though.

Caitlin 34:50
but not quite.

Scott Benner 34:52
Yeah. So he's like, I don't I I'm not it's too cold. I was like, No, I hear you. So anyway, I know where Maine is. I just didn't know that. I didn't know you live near there.

Caitlin 35:02
I'm sorry. I'm in Quebec. Not far from Montreal.

Scott Benner 35:05
Okay. All right. reference point. Yeah. Well, then you even laughed. I made a bird a reference. He was Vancouver. And you still know Canadians, you know everything about hockey. Seriously,

Caitlin 35:18
I was being polite.

Unknown Speaker 35:19
You don't, don't don't

Caitlin 35:20
really follow hockey. To me, like, the only hockey player I'd love to hear about is Max Domi. And that's because he's the guy. And he's, he's type one. And he plays for the Montreal Canadiens.

Scott Benner 35:34
So if I y'all skate the ice, you won't immediately I'll shoot the puck afterwards. Nothing like that. Okay.

Caitlin 35:40
No, I don't skate either.

Scott Benner 35:43
I don't either, like

Caitlin 35:44
winter, and I don't like maple syrup.

Scott Benner 35:45
You kind of get the hell out of Canada. I seriously, I'm looking I want to retire. Somewhere where it doesn't snow when it's not humid. Other than that, I don't care what the place is. Do you think that place exists?

Unknown Speaker 36:00
No,

Scott Benner 36:01
yeah, I don't either. But that's what I want.

Caitlin 36:04
Unless you want to go to like Saudi Arabia.

Scott Benner 36:09
Doesn't snow not humid. I also don't want to be in prison for no real reason. So I

Caitlin 36:16
thought the only country that came to mind really quickly, I'm not very good at geography. I have to

Scott Benner 36:20
admit, I don't know anything about the political setup of Saudi Arabia. But I have to imagine that I would do something to get myself thrown in prison pretty quickly. So I'm gonna have to take a hard pass on that. But I seriously I, I either that or I need like, 5 million more people to listen to the podcast every month so that I can own a house somewhere. I I'd like to have a summer house and a winter house maybe. But I don't think that's in the cards. Anyway, well, we'll work on it. That's my dream is summer house winter house, I really want to avoid humidity and snow. That's all I have. And you know what will happen? I'll finally get to that I'll send to this place where I can have a summer house and a winter house. And then I'll get old and I won't be able to travel. And then I'll just be pained by the fact that there's a house somewhere that's not humid in the summer, and I can't get away.

Caitlin 37:09
That's really depressing thought.

Scott Benner 37:11
Yeah, that's what's gonna happen. Anyway. Okay. So tell me about how you manage type one with the other stuff. Does the other stuff impact the type one management?

Caitlin 37:22
It definitely does? I mean, I'm sure everyone goes through it at the beginning. In our case, when we went to the ER, her blood sugar was and I didn't bring my calculator I promised I wait,

Scott Benner 37:36
wait, hold on a second. If you just go to computer Juicebox Podcast calm right at the top, click on a one cm blood glucose calculator, you will be taken to a handy dandy little device. So you tell me a number. I'll click on m m o l, you say a number and then I'll I'll translate it for you.

Caitlin 37:58
42.6 42.6

Scott Benner 38:02
was an A Oh my goodness. was a 767 blood sugar, which translates to a 28.4 a one say?

Caitlin 38:11
Yeah, that was her number when we went into the ER

Scott Benner 38:26
de veau hypo pan has no visible needle, and it's the first pre mixed autoinjector of glucagon for very low blood sugar and adults and kids with diabetes ages two and above. Not only is chivo hypo pen simple to administer, but it's simple to learn more about. All you have to do is go to G Vogue glucagon.com forward slash juicebox. g Vogue shouldn't be used in patients with insulin, Noma or pheochromocytoma. Visit je Vogue glucagon.com slash risk. You know not all devices are created equal. For instance, there are a lot and I mean a lot of blood glucose meters available for you to purchase. But sometimes we don't think of it that way because the doctor just writes a prescription and they usually write the prescription for the blood glucose meter that I don't know they normally write prescriptions for doesn't make it the best one doesn't make it the most accurate doesn't make it right for you just makes it the one they are accustomed to talking about. Well, I'm here to talk about the Contour. Next One blood glucose meter. It's simple. This meter is incredibly accurate. It is small and easy to carry, but not so small that you'll drop it. There's a bright light for nighttime viewing. The screen is easy to read. And if you want to pair it with their Bluetooth app on your Android or iPhone, you can and if you don't want to, you don't have to. Can I tell you a secret? We don't use the app. I just love the meter and so does Arden. If it's in her purse, if it's in my pocket, the test strips are incredibly, incredibly accurate and allow for second chance testing meaning should you swoop in there hit a little bit of blood but not enough, you have time to go back and get more without impacting the accuracy of the test. We're wasting the strip. That's all you need to know in my opinion, Contour Next one.com forward slash juicebox. Go there check it out. There's actually a ton more on the site. But today, I'm just want to make sure you remember that meter rocks. Contour Next one.com forward slash juice box. Last thing, please consider visiting T one d exchange.org. forward slash juice box and putting your information into the system. Okay, what am I saying? T one D exchange is gonna ask you to take a short survey. I believe it took me about seven minutes, you're going to need to be a US resident with type one or a US resident who is the caregiver of someone with type one, you answer super simple questions about diabetes. That will in no way make you feel uncomfortable. I was like these are easy. I can answer these. Now when you do this, it's completely anonymous. No one's gonna know it was you. And it is 100% HIPAA compliant. T one d exchange.org. forward slash juicebox. Why do you want to do this? Well, in my opinion, it's because past participants like you have helped to bring increased coverage for test trips, Medicare coverage for CGM, and changes in the ADA guidelines for pediatric a one c goals. And I personally am excited to imagine what your participation and mine will eventually lead to, isn't that cool? You answer some questions, they dad it up, and then they go do good stuff in the world, you can be part of that without ever leaving your house, you can do it from your phone, your tablet, your laptop, you cannot do it by smokes. But maybe if you give them enough data, they'll figure out how to do that. I don't think that's going to be true. You know, I'm gonna take that last part back no matter how much type one data you put into the T one D exchange, we're not going to figure out how to connect smoke signals to computers. And just real quick data for those of you who prefer data over data back to the show.

Caitlin, you're a bit of a neophyte on this. What you should have said after that was What's the address of that? calculator? That's amazing. And I would have said it to Juicebox Podcast comm forward slash conversion. And then you would have told the story about the rest of it. Go ahead. got

Caitlin 42:34
very sorry. No, no, no,

Scott Benner 42:35
no, it's it's your Canadian. You have no way to know. Go ahead.

Caitlin 42:38
Well, I do listen to it. So I should have known.

Scott Benner 42:42
I didn't know I was gonna pimp in there for a second. You were like, oh, it will just keep telling the story. Trying to tell people about the calculator. Caitlin, come on. I was thrilled you're from Canada.

Caitlin 42:53
No, so that was what her blood sugar was. When we went to the hospital. She's and that was that was that wasn't right after a meal. That was like five hours fasting.

Scott Benner 43:05
Oh, my goodness. She's She's got diabetes. Yeah.

Caitlin 43:08
So it was bad. And they basically brought us into the back and checked and she wasn't MDK apparently we she was really close, but not quite. So they gave her an injection. And they watched us for a few hours. And they sent us home

Scott Benner 43:22
to have a private room at the ER. That one was Yes. No. I mean, like one with like your name on.

Caitlin 43:29
At that point. I know some by name.

Unknown Speaker 43:32
Yes. Hey, you want to get Kaitlyn Oh, whoa.

Caitlin 43:37
No, I try to avoid it at all costs, but that her file is definitely thick. Every time I go there.

Scott Benner 43:43
The computer slows down. You can hear the hard drive clicking. It's like trying to bring the information up. Or do you have computers in Canada? Right?

Unknown Speaker 43:54
Yes, yeah, I'm on one now. Oh, fancy. Yeah.

Scott Benner 43:59
But honestly, there are 15 raccoons running on a wheel outside to make your own electricity, though, right.

Caitlin 44:06
Raccoons are a little above my budget. What are you using? mice?

Scott Benner 44:10
Oh, well, that's that. I mean, they're easier to feed. Exactly. Yeah, that's fine.

Caitlin 44:15
So you steal the neighbor's bird feed.

Scott Benner 44:18
Why isn't your neighbor like 10 miles away? Don't you have to get on an ATV to get your mail or something like that?

Caitlin 44:23
Well, mice run fast. Oh,

Scott Benner 44:25
well, you ride the mice. Now we're doing now we're getting somewhere.

Caitlin 44:30
I'm trying to play along here but it's not working.

Scott Benner 44:32
I have no idea why your mom didn't like you. I'm just kidding. Sorry. I wasn't even funny.

Unknown Speaker 44:37
And yet I'm laughing with the alcohol but Okay,

Unknown Speaker 44:40
we're gonna Oh, okay. I got you. I said, Well, yeah,

Caitlin 44:44
so the note so they gave her the injection of I guess fast acting and then they gave her a small snack. Which they actually had me go through their cupboard of food and I picked out a little baby food pouch of applesauce. Cheerios, because that was all that they had that she could eat. And she had that. And then they tested her blood sugar, like three hours later said, Okay, we're good. It went down enough. Now you're going to come back first thing in the morning, and you're going to go here, and you're going to talk to your doctor. And this was Labor Day weekend. So like we went in Friday night, she got back from school. And then we were there Saturday morning, first thing in the morning, and we met her endocrinologist. And we started the whole like, crazy. Everything.

Scott Benner 45:31
That's so yeah, that really sucks. Labor days. The only weekend I feel comfortable taking three days off in a row.

Caitlin 45:38
Yeah, it's this weekend, and I'm so happy. Yeah. Except it's kind of like a bittersweet thing, because it's now the diversity weekend. So

Scott Benner 45:45
yeah, no kidding. ruins picnicking and everything. Well, I have a question that's got little to do with what you just said, but it popped into my head. I think I'm gonna lose it if I don't. How much food do you travel with when you leave your house?

Caitlin 45:59
Well, a lot. Yeah, like we went camping. I took the kids camping this summer, my husband was still working because he couldn't get time off. It was a new job. So I took them camping out by Lake Huron. And we drove all the way. And my van was packed with food. Because I never know what I can get when I'm somewhere else. So like, she has like special chocolate. I have to buy specific brands of certain things. And I never know what's available. So I'm always packing everything.

Scott Benner 46:34
You're a hoarder, I would imagine. And

Unknown Speaker 46:36
I have to be Yeah, right. I

Scott Benner 46:38
on purpose. He did the other two kids have anything going on?

Caitlin 46:42
Um, luckily, no, my second one is allergic to peanuts. But at that point, they're like she's allergic to peanuts. I'm like, Oh, good. They're like, Oh, good. I'm like, like, I'm like only peanuts. I'm really not worried about that.

Scott Benner 46:54
Did you like smack her and say, Listen, you got to try harder.

Caitlin 46:59
I was super relieved. And then like my, my youngest, my son, he's not allergic to anything. So I was like, Okay, I guess Third time's a charm, they say and that worked that time. So

Scott Benner 47:09
what's the what's the age difference between the three kids?

Caitlin 47:14
Get again, you're gonna be like, what? 15 months between the first two? I understand. 18 months between the second two.

Unknown Speaker 47:20
You really don't like the cold?

Caitlin 47:21
No, my body doesn't like birth control. Oh, oh,

Scott Benner 47:26
you like your husband? I see what you're saying.

Caitlin 47:28
Yeah, it's, uh, let's just say it didn't work for me.

Scott Benner 47:31
You want to try putting him in a colder room? Because you might you might just avoid him.

Caitlin 47:35
I'm fixed. I can't have any more kids. I don't. That's why do you want it? You're so young. I'm like, I have three. I have nothing. I have nothing against adoption, if I want one later on. But I do not want to have more.

Scott Benner 47:47
He would he said Why do you want one? You should have touched milk on your oldest and been like, here, watch this.

Unknown Speaker 47:55
I don't want any more kids.

Caitlin 48:06
They don't like to do the surgery before you're like 30 or 35? Because they figure you might change your mind? And I'm like, No,

Scott Benner 48:12
yeah, I hear I said I see their side of it. But you can mean three kids is three kids. Yes, a lot of kids.

Caitlin 48:20
I do have six weeks a year where they follow an age. So my son is turning nine in October. And so for six weeks, I'll be able to say my kids are 1110 at nine years old. which always makes people kind of like jaw drop.

Scott Benner 48:38
Yeah. Or judge you quietly in their mind probably

Caitlin 48:40
always judge me. Or they get the impression that they're all from different parents, like all have different fathers.

Unknown Speaker 48:48
Oh, because they think at least one of you should have been saying

Caitlin 48:52
I'm young, you know? Yeah. I don't know. Like, no, it's I've been married. They're all the same father and I'm still married. Yeah,

Scott Benner 48:59
no, I mean, you're one of those. It's interesting. It sounds like you're gonna be married forever. And listen, I I'll be honest, like I've said on here before, like, the way my wife and I got married. The fact that I told you earlier that we have been married for 24 years, I think is is fairly astonishing and uncommon, to be perfectly honest. And, you know, we were very Yeah, we were super young. And, and she said to me the other day, she's like, what were we doing? I was like, I was a huge mistake. We really, we're always telling our kids like 30s a good age to start thinking about getting married. You know, you have kids when you're 55 That's it. That's how you handle it. I don't know if the kids are offended when we tell them that.

Caitlin 49:44
Oh, my husband seems to be on the on that hole. Well, you can date when you're 30 thing.

Scott Benner 49:49
Well, he he thinks so. Cuz he's lucky. He reached back 10 years to get a girl. Exactly. Yeah, he's like, I think he can wait till you're 14. Grab

Caitlin 49:57
yourself a nice 29 year old Usually you marry up for money, but I made a mistake there. You just went for the bank the bank statements.

Scott Benner 50:05
You just went for a good conversation. Gotcha cheap. I'm just saying, Hi, I know you're gonna hold out. Well, we didn't get to one thing that I don't want to skip over it. But from your email, eczema, she has eczema as well. Yes, she does. Now that's autoimmune, right? Yes, it is interesting.

Caitlin 50:27
Which means like, at this point where I actually forgot, but yeah, when she was a baby, it was really bad. Funny, I guess a funny semi related story was that we had a dog when she was born. And the dog loved the baby, and was so protective of the baby. But her eczema was so bad. And it was like, we'd be like, it was read. And it was just like dripping.

Scott Benner 50:57
Yeah, like, fluid, right?

Caitlin 50:59
Yeah, baby scratch, and we couldn't keep her hands off of it. And so we thought she was allergic to the dog. And so we actually found a better another home for the dog, which broke my heart. But we didn't like just dropped them at the pound or anything. We rehome him through a rescue. And we kept them until he went to his new family. And his new family sent me pictures. And so I knew he was in a good place. So I felt better about it. And we found out after the fact, when she had a reaction to egg, that it was actually the dog food she was allergic to wait a minute, every time the dog would touch her. He had traces of the food on his mouth or on his nose, or on his fur. And it was actually that she was reacting to the egg and his food.

Scott Benner 51:46
Oh my god, your life is crazy. By the way, this story would have been better if you said wolf dog. But that's neither here nor there. So keep going.

Caitlin 51:56
So she was a really big dog. So she

Scott Benner 51:57
wasn't allergic to the dog as so much as alerted to what he was constantly touching and being and that was enough. Yeah, could you in hindsight, would there have been a dog food you could have gotten that would have stopped that?

Unknown Speaker 52:12
Yes. Oh,

Scott Benner 52:14
you're sad about that. Right?

Caitlin 52:16
Yeah, but I mean, at this point, my dog like the dog is definitely dead.

Unknown Speaker 52:21
The episode, the dog is definitely dead. I think it's the name of this episode, Kate.

Caitlin 52:28
I mean, he was in Newfoundland and newfoundlands live like maximum like nine to 12 years, but 12 years is the max

Scott Benner 52:35
just timewise he

Caitlin 52:36
my daughter's like 12 and are almost 12. Yeah. So he would have been like 1415 by now. Well, that said,

Scott Benner 52:43
I just realized, as you were telling the story, I'm like, Oh, I bet you there was food that would have allowed them to keep the dog.

Caitlin 52:50
But I mean, looking back, it probably wasn't the worst thing in the world anyways, because it gave me more time to spend with my kids. I was gonna say and not have to worry about the dog and the dog for because newfoundlands talking about like 160 pound dog with long fur that draws a lot. But like, the sweetest dogs, they're like, many dogs. Yeah, they love kids, and they're super tolerant. But it's a lot of work to take care of a dog that size too.

Scott Benner 53:14
I agree as a person who was outside five minutes before I recorded with you going oh my god, Basal just go to the bathroom and get in the house. I gotta go upstairs. In the same time, I'm like, Am I pressuring this dog to do his business? I wouldn't like if someone was outside of the bathroom door going like, come on, Scott. Hey, Scott. Come on. I was doing it to the dog. Like we gotta go, man.

Caitlin 53:38
As an aside, we live in an apartment. We only have one bathroom. So five people one bathroom. I know how that feels. Oh, my gosh.

Scott Benner 53:44
How did the caribou get out of the parking lot? They must get all stuck because of the cars. Have you ever seen a caribou? Just Yes or no? Caitlin? Oh, yes. Oh, do you call them reindeer? No, I would. For no real reason. I would just be like Santos nearby. Okay, so food allergies, eczema, ADHD, type one diabetes. I missed asthma, right?

Caitlin 54:17
Yes.

Unknown Speaker 54:18
Ah, how does that

Unknown Speaker 54:21
manifest like I

Caitlin 54:25
we just noticed one doctor's appointment that there was a little bit of like, her lungs didn't sound clear. And that she was coughing a little bit and they said, Well, she probably has asthma. Do you ever notice that she's short of breath? I'm like, Well, sometimes. And so they prescribed her inhalers. It's never been anything that's led us to go to the ER, or anything like that. It's really just when she's doing intense physical exercise, or when she has a cold.

Scott Benner 54:53
It's interesting that your Mendoza line for illnesses. It's never sent us to VR, so it's not really a problem. That's that that was it. Just make a statement.

Caitlin 55:01
It's a strange baseline, but it's what we know. Yeah.

Scott Benner 55:05
So how does all of this I mean, let's talk about her like a person now, instead of a case study, like, how does all of this impact her?

Caitlin 55:16
Well, I mean, personality wise, she has a, she's not the most outgoing kid. And she doesn't like being different, because she's always been different. I mean, in daycare, when she was doing daycare, she, she had a packed lunch from home and everyone else had the food that they were serving at the daycare. And at school and kindergarten, she had to sit apart from everyone else in the lunchroom to make sure that there was no chance that she comes into contact with anyone else's food and kids throw food. So she's always felt different. So she doesn't like talking about these things at all. Okay, she doesn't like, just come out and say, you know, I have diabetes. And this is what diabetes is. And sometimes I have snacks. And sometimes I have to give myself insulin. And it's just the way I am when she's not comfortable doing that. So she likes to keep it all inside, which is really hard for her. And I'm hoping at some point that she becomes more confident to just, like, tell people about it. But I can't push it. I tried to actually, I think her teacher the first year that she was diagnosed, because it was the first year, the first week of school, that it happened, we didn't have a plan beforehand. Like she had been in school three days. And that's when she was diagnosed. So we kind of went in, she didn't miss any school. After the long weekend, she was right back at school. And it was kind of like, Okay, this is what we're dealing with. And the teacher got a little bit too proactive and tried to explain to the class, what she has, like what diabetes is, and it embarrassed her so much, because she didn't even understand what was going on at that point. Like it was new to her and she didn't want to talk about it. And there was a teacher telling everyone about her medical condition. Yeah, I think that actually just made it that much worse for her.

Scott Benner 57:12
Jenny and I just did an episode about talking about diabetes to people outside of your, you know, circle who don't listen to that. Yeah. And you just made me think of when I think I think I said in the episode, like the difference between what people need and what you think they need is sometimes, you know, a pretty big difference. And you don't know what other people want. And sometimes you try to help and you make it worse. So,

Caitlin 57:37
yeah, I know the teacher meant well, yeah, of course. And I mean, I've explained to her it's it's probably easier for you to explain at the beginning of the year to your classmates. why sometimes in class, your phone is beeping or why you're taking out rockets and eating rockets are those are Skittles or Smarties. Sorry, those are Smarties. You guys rockets are Smarties.

Scott Benner 58:01
Why don't I change the name just because a different country

Caitlin 58:03
because Smarties are actually like m&ms here. Well, yeah, it's a different brand of m&ms. Smarties is m&ms rockets are smart chocolates. So

Scott Benner 58:15
all right. I mean, jeez, who came first?

Caitlin 58:18
I think the Smarties like the chocolate thing with the candy over it came before which is why when your Smarties came here, they called them rockets.

Scott Benner 58:25
So we ripped you off.

Caitlin 58:27
I have no idea sounds like that's what's going on. I could probably Google it. No, don't if this is gonna be like a who got it. First thing I don't I don't want to get that far.

Scott Benner 58:35
Because I could get I could get absolutely enraptured by it. And just you know, we can talk about

Caitlin 58:40
like, the history of candy. Yeah,

Scott Benner 58:42
candy naming more specifically, not even the candy. I'll be like, Mars bar. Next, Caitlin. Where's that from? The podcast will be 19 hours long. And I'll be like, oh my god. Do you guys remember $100,000 bar? Why'd they change it to 100? grand? Which to you is probably m&ms but God Who knows? You don't I mean? Well, that's, I mean, that's really not great, obviously. And it's so she's trying to keep it private. Is that does that how does the ADHD conflict with the needs of diabetes? Or does it?

Caitlin 59:27
I don't know if it necessarily does, it's, it's harder to say because I can't expect my 11 year old to be on top of everything all the time. Sure, but she's very forgetful. So she'll forget her PDM and I have to just as opposed to nagging her. Okay, make sure you have all your stuff packed. I have to go and check it to make sure that she did because she's forgetful. The medication that cuts her appetite during the day is definitely a problem because that impacts her energy levels and also changes the way that we dose Insulin,

Scott Benner 1:00:00
because you can't get her to eat if you're in a panic situation.

Caitlin 1:00:04
Exactly. Like she's, I've had to threaten her with glucagon before. Like, I don't care if you're hungry, you're gonna eat it. Or like you've been dosed for it. You said you were gonna eat it, you cannot change your mind now. Okay, which actually, we don't Pre-Bolus anymore. I know. It's terrible, but we can't put that

Scott Benner 1:00:21
medication. It stops her from having any hunger at all.

Caitlin 1:00:26
Yeah, or it sometimes makes she says it makes her feel queasy to even think about eating. I'm sorry, which we're trying to figure it out with the doctor to see if maybe there's another one that won't impacted as much. But that's, there's a lot of different medications for ADHD. And they all work a little bit differently. So it's a trial and error, unfortunately, on that sense,

Scott Benner 1:00:46
yeah. Well, how does her? How does our agency usually run? And are you? Are you at least able to keep things kind of stable, or what happens?

Caitlin 1:00:58
Um, it's not as low as I'd like. But on the other hand, since starting her pump, we haven't had an official agency done. Because COVID

Unknown Speaker 1:01:07
yay. Okay.

Caitlin 1:01:08
So now all of her appointments that we do, they look at the, the numbers on the PDM that we upload, they look at the Dexcom. And they say, Okay, well, you know, do you notice this trend? And I'm like, Yeah, I've already fixed it. Do you notice that? Oh, yeah, no, we've adjusted the basil. So we're good. What doesn't really have anything to add? Really?

Scott Benner 1:01:27
Do you use clarity? Like, what's the estimated a one see through clarity?

Caitlin 1:01:31
It's never been right. Okay. I think I was always worried about that. I think the first time that we went in the a one c estimation that they had was like, 9.8. And it was actually 7.40. Wow. So I never really look at the number because I know that for us, it's really it's always been off. And I don't know why I know. A lot of people say it's right on for them. But maybe it's just because for, for my daughter, it just fluctuates so much. Yeah, I think her blood sugar sometimes goes up really fast, and then down really fast. And like, it's really hard to keep her on a steady line.

Scott Benner 1:02:13
You know, the next time I have somebody from Dexcom, on who understands that, I'm going to ask that question, because we have the similar, you know, I see things to people talking. And for us, it's always pretty close. You don't I mean, like within a not even just a percentage point. Like, you know, last point for something like that. That thing's usually pretty spot on for us. And yet I hear other people say the same thing like, oh, the estimation I get is is never what my one see is an off to find out why that is? That you know how that happens. That'd be interesting to know.

Caitlin 1:02:48
Yeah, I think our endocrinologist said, it. It seems to be about the amount of insulin on board that she might be quite high for me, like in 16, which I'm sure you can use your wonderful calculator. 11.7 a one c 288. blood sugar. Yeah, it can go up pretty high like that, but then it'll go down very soon afterwards. And that might just throw off the numbers in the a one C.

Scott Benner 1:03:15
Okay. So you can go from like 288 to, you can go kind of from like an 11 to a seven or even farther down.

Caitlin 1:03:23
even farther down. Okay. Really fast. Wow. Which makes the management a little bit tricky.

Scott Benner 1:03:29
Yeah, well, but you're not Pre-Bolus thing. So that's kind of to be expected. To be honest, you're shooting up because of the food and then crashing down because of the big Bolus afterwards, I imagine.

Caitlin 1:03:38
Yeah. And also activities a big thing too, because with a kid that's hyperactive, like if she's gonna eat breakfast, usually her breakfast is pretty, it's pretty much the same thing every day, so we can count on her eating it. She hasn't had her medication yet, so it hasn't cut her appetite. So we'll Pre-Bolus breakfast. But she could have that breakfast. And if she's gonna go down and play video games, because it's pouring rain outside, then she's gonna spike and she's gonna stay high. And if she's going outside to ride her bike with her friends, then she's gonna drop low on the exact same dose, the exact same carbs.

Scott Benner 1:04:17
Wow, that doesn't seem

Caitlin 1:04:19
like what works one day doesn't work the next day for her right. And so ratios are all over the place. Because of what she's doing. And we, I mean, we've tried adding extra snacks or, you know, doing temporary increase in the basil to compensate when she does video games and it works more or less. But there are those days where she's planning to do something and then hope she changes her mind and then goes through something else and it throws us off completely. Because her mind is like a ping pong ball.

Unknown Speaker 1:04:50
Yeah. Wow.

Caitlin 1:04:53
She's never doing the same thing two days in a row. So it's really hard to get that baseline to see what works for her. So we have to accept a little bit more. You know, I understand as much perfection, I'd love to see her in the sixes. We're in the sevens, but we're below eight. So I'm okay with that for now. Okay. And we're heading into puberty.

Unknown Speaker 1:05:12
Yeah, it's gonna get worse.

Unknown Speaker 1:05:14
Terrible. She, I

Scott Benner 1:05:15
need more. Did you think about using? Like Omnipod? Five when it comes out? Let's try and an algorithm doesn't

Caitlin 1:05:23
have the dash here yet. Oh, Canada cheese. I

Unknown Speaker 1:05:26
forgot. I don't

Caitlin 1:05:28
even have the dash here. Alright, so still on the old one.

Scott Benner 1:05:31
Are you interested in an algorithm when it's available to you?

Caitlin 1:05:34
I'm actually considering looping. So

Scott Benner 1:05:37
I'm just wondering if if something that would if I don't know like, I don't know if your scenario would be helped by that or not, but interested to find out.

Caitlin 1:05:47
I was I looked into looping. I haven't officially like gone through all the papers and stuff for it yet. But because it would help when she's out. Or when she's at school, at least it can make those little changes. So I don't have to constantly text message her saying you need to do this.

Scott Benner 1:06:03
Are you like limiting basil a lot and like doing Temp Basal.

Caitlin 1:06:08
I don't really usually do Temp Basal. I'll just be like, give yourself an extra point two, five.

Scott Benner 1:06:14
So you're kind of bumping at the at the number. Okay.

Caitlin 1:06:17
Yeah, exactly. So I'm

Unknown Speaker 1:06:19
trying to push down usually. Yeah.

Unknown Speaker 1:06:23
Are you okay?

Scott Benner 1:06:25
I'm gonna I just want to know if you're okay.

Caitlin 1:06:27
I'm good.

Scott Benner 1:06:28
You are. You just you're like you're not like secretly, like a heroin addict. Or, like, in the middle of the night, you don't leave to do high risk cooking or something like that just to do to escape. There's nothing crazy happening to you like, how are you coping? I guess is my question.

Caitlin 1:06:46
Well, I mean, it. Diabetes in itself is very stressful. It's probably the most stressful of everything. Because for allergies, I control what comes into the house, I make the food. And in general, if something's going to go bad, it's going to go bad right away. And I'll see it right away. But diabetes, I know, there's such long term impacts of everything. So I sometimes I'll fall asleep, and then she'll go high, because she had more protein at dinner. And I won't wake up to adjust it because my alarm goes off, but I ignored it. And then in the morning, I'll feel terribly guilty. But yet again, I need to sleep sometimes. And it's, it's hard. There's always parent guilt that you have about everything. And every decision you make when you're a parent, even if your kid is like perfectly healthy without any problems. It just adds an extra layer to it. So I guess it's just extra guilt. Finding time for things that I used to do. Before all of this, it's harder. like finding a babysitter isn't as obvious anymore. There's like one parent, one person that I can leave my kids with. And that's Grandma, and right now is COVID. I can't leave them with grandma. Yeah, no, cuz they're going to school.

Scott Benner 1:08:09
Oh, yeah. Well, Canada. Yeah, they sent him right out there like you go get him. How is How is COVID? there? Are you guys? Everything's coming back to normal or not yet?

Caitlin 1:08:22
Well, it the numbers were really high for a bit. And then they dropped back down. And they're starting to increase again, I guess because people are getting tired of staying home. They did reopen businesses. And so people are more in contact with each other. So I mean, nothing compared to what you guys are going through at all. But in the province of Quebec, we're getting like 100 and something new cases a day. It's 100. At one point, it was over 1000. Yeah. So it's definitely better than it was. But it's still enough to make me wonder that, you know, maybe we shouldn't be leaving the kids who are in school with 400 other students with grandma who has COPD. I just

Scott Benner 1:09:02
put an episode up yesterday. That's with a teacher. It was recorded right now. And by the way, I guess for context, it's September 3, but Kayla and I are talking right now. And we were talking about, you know, going back and I said I don't see how this is going to go well at all, but I guess Okay, let's, let's see. But you know, Arden's not going back to school. She's doing it remotely. And my son, my son's doing college remotely. He's like, quite literally down the hall right now getting an econ degree in his bedroom. So

Caitlin 1:09:31
no, what if it was an option? And maybe if I didn't work full time,

Scott Benner 1:09:36
Yeah, I know. I understand that. I understand the you know, the limitations for most people. I mean, I I do this so I can do this here. And that kind of opens up our options for keeping the kids with us. Oh, my gosh, dude. Alright, but you you just you just I'd like how are you hating on you said I'm okay. I'm good. That's I either you're lying to me or you're good. I don't know which one it is. But either way, I'm I don't. I'm not judging you. I'm just like, it's it's a lot. You know, it's also interesting to hear you say that the diabetes is, though, is the worst part of all this?

Caitlin 1:10:15
Yeah, it's the hardest to manage. It's not that it's like worst was the bad words won't kill her instantly. And if she has peanut butter, it would kill her within like minutes. But it's easier to avoid peanuts than it is to avoid eating.

Scott Benner 1:10:32
Well, it's true.

Caitlin 1:10:34
And we had, like, I think around the time that I sent you the email being like, I wanted to chat about this, like we were having huge power struggles with food. Okay, that was one of the biggest things that we were having. And one of the times we decided that that's when we we couldn't Pre-Bolus anymore. Is that one of the only things like she, in her, I guess her personality, she likes to control anything that she can, because she has so little control in so many aspects of her life. And that started like with the food allergies, because she couldn't control what she ate. So she wanted to control when she ate and how she ate. Now with the diabetes, it adds it added the extra well. Now what you eat is important, but also when you eat and how you eat it. So everything about it is important. Yeah. So we have to have the control. And she resented that for the longest time. And so what would happen is we'd sit down and she'd be like, Oh, yeah, for sure. I love this. I'm going to eat it. And then we dose her for it. And then she'd say, No, I'm not hungry. Now I want toast. Because she loves bread. Yeah,

Unknown Speaker 1:11:47
just to make the change, like

Caitlin 1:11:49
chicken and vegetables. That's what everyone's having for dinner, you're gonna have that. She's like, No, I'm not. You already gave me my insulin make me toast. And I was like, What?

Unknown Speaker 1:12:02
Caitlin? I'm gonna send you a link.

Caitlin 1:12:04
And so we got to this point where? Yeah, we got to this point where it was like, okay, the we have to come up with some way to work this because I can't sit there and threaten you with a glucagon injection. Or pour corn syrup down your throat, which we've done a few times. Because she just so demand she hated corn syrup. That was the only thing that we could get into her for carbs that were quick, when she was already been given the insulin and she was going down, but she suddenly refused to eat, because she wanted us to make something different. And I was like, No, okay, it's either this or I'm giving you a quarter cup of corn syrup.

Scott Benner 1:12:47
Oh, my God, that sounds terrible.

Caitlin 1:12:50
Okay, maybe not a quarter cup. That's a lot. Maybe like an eighth of a cup? Yes, it's a lot of sugar. And it's

Scott Benner 1:12:54
not your fault. Use a different system of measurement. So

Caitlin 1:12:57
I never understood ounces. Nope, totally strange. But so you're Yeah, I

Scott Benner 1:13:03
mean, that's really stressful. What you just said like, I felt stressed when you were saying it. So I don't know about like doing it must be. And I think everyone listening knows that pressure, who's had at least a smaller child or somebody who just refused. Like you're standing there at someone's, you know, literally crashing down with all this insulin going and you're just you're just like, you have to eat you have to you have to you have to and it's just such a panicky feeling. You definitely are not at your best in those moments. And and I think I've been there for certain. And, and your thing is compound that like 15 times over. I was going to say, if I send you a link, and you please have her get on the schedule for six years from now to record the podcast, because when she's 18 I really want to talk to your daughter.

Caitlin 1:13:50
Much Did your mom actually miss you? Yeah.

Scott Benner 1:13:53
Hey, siddhis Kaitlyn lady, right?

Caitlin 1:13:57
This whole thing that she did, like, how did that work for you? Are you even still alive?

Scott Benner 1:14:01
No, I just want I mean, her perspective on all this stuff. One day is gonna be fast. I don't imagine she'd be somebody who'd want to come on the podcast, but this is really interesting. And her perspective would be would be incredible, actually, because you're just doing the best you can. And you have obviously a lot of roadblocks and listen, she's she's in school, like you kept her in school. That's amazing. Right? She's her a one sees lower. She's, you know, as healthy as you can as you can accomplish right now. That's amazing. There's a lot here. I mean, you guys are doing you're just doing more than than I think anybody could expect. So it's really great. I you should be congratulated. I'm sure nobody's I don't know if anybody's ever taken the time to say to you like well done, but this is, this is well done. You are, You are the ringmaster of quite a show and you're and I can I can

Caitlin 1:14:59
It's not a show is a circus.

Unknown Speaker 1:15:02
I was gonna say you get the whole thing, right. You're all three rings. circuses don't even exist anymore.

Caitlin 1:15:09
No, not really. I don't know. They have like this horse thing. It's not as though Cirque du Soleil is still around, though they went bankrupt. I don't know how that's gonna work after COVID

Unknown Speaker 1:15:20
Yeah, it's not.

Caitlin 1:15:23
Not at all. Yeah. So, no. And it's it's interesting, too, because I think we've started on this. And then I got sidetracked because I do that very easily. Do you have ADHD? After the you know, when they take you in and they start doing all those the lessons after diagnosis? Yeah. And they're teaching and they have all these handouts pre prepared, and the nurse sits down with you. And in our case that we weren't in the hospital, so they didn't do it in the hospital. We went in, like two days or two mornings every week for like, a month. And they did the trainings and little bits. And they're like, Okay, well, here's some great idea for carb free snacks. And here's some good things like protein things. And I was, I would look at these sheets. And I would say, okay, nope, nope, nope, nope. Okay, cucumbers are okay. Nope, nope. And we just went through the list. Like, I can't, like I had to reinvent the whole thing. Yeah. Because that they're like, Okay, well, you know that. Some when you're maintaining blood sugar after a low, and it's going to be more than an hour, you give like some crackers and peanut butter or cake? No, we can't do that. Yeah. You know, or we can try this. No, we can't give yogurt. And this yogurt that's made with soy. It spikes her too fast. And it doesn't maintain for quite as long. So it doesn't act in the same way. So there's not always like a direct replacement for all of these things. So we had to kind of reinvent the diabetes wheel.

Unknown Speaker 1:16:53
Because for her, yeah.

Caitlin 1:16:56
And like, I'm on a few forums, and I keep seeing these things pop up, like oh, what are suggestions for this? And I have so few it's like, okay, you can have pepperoni sticks, or jerky? other CARB free snacks, vegetables.

Scott Benner 1:17:13
Yeah. Like, by the way, a lot of vegetables have carbs in them. And we tend not to think of it. So yeah,

Caitlin 1:17:19
but negligible. Like they're not the carrots of the world, but more like the cucumbers. And that's all she eats. Yeah. She doesn't like carrots. She likes red peppers, but they're too curvy.

Scott Benner 1:17:30
Is there even a way to quantify her diet? Or there's not right, like you just it's a bastardized diet that just fits for her.

Caitlin 1:17:38
Exactly. Okay. I mean, sometimes, like when I'm looking up recipes, I'll go like vegan, I'll type in vegan because it doesn't have the dairy or the eggs, for sure. Right? A lot of them have nuts and peanuts, because they want the extra protein. Or they have those fancy flowers that we can't use because they most of them are contained or may contain sesame's and others like traces of that. So I kind of melt together different recipes and like, Okay, I'm going to try it without this, or I'm going to add this instead. And you learn to adapt regular recipes, to not have that, like most any baking recipe that has milk, you can put soy milk instead, or almondmilk. But it's like the eggs. Not always the same. There's not they have egg replacement powder, but it doesn't work the same way as eggs do. Gotcha. So you have to find out different ways to do things. And it's just being creative, I guess. And a lot of trial and error. I was

Scott Benner 1:18:37
gonna say, how many meals Have you made where you're just like, Oh, god, this is not edible. Don't touch this.

Caitlin 1:18:44
That's usually like the day before I do groceries. And I'm like, I don't have much in the fridge. I'm just gonna toss a lot of this into this into the pan and stir fry it and serve it with rice. How about that?

Scott Benner 1:18:54
Wow, do do you do two meals? Or does the family pretty much all eat the same?

Caitlin 1:19:02
It depends. I usually like to cook one meal, because it's easiest that way. Yeah. But because of her allergies. My other two kids don't have those allergies. Sometimes they want things that she can't eat. And I'm not going to say like I always said from the beginning. I'm not going to take her allergens out of the house, because then nobody could eat anything. So I have milk in the house. We have eggs, I have peanut butter. We have lunch that we don't really have anything with sesame because sesame seeds get everywhere. But pretty much everything else we have in the house. And so sometimes I'll put a lasagna in the oven, and I'll make her like a submarine sandwich for dinner. Because she loves submarine sandwiches. It has her favorite ingredient bread.

Scott Benner 1:19:50
I love bread every listen. It's hard not to love bread. I have to be honest.

Caitlin 1:19:54
Yeah, that's it. She doesn't like pasta. Okay, so anything that's pasta, if you have Do you want anything pasta? like then? You know she'll have to have something else but she's gotten used to it. You know, we occasionally order pizza. I'm so lucky we don't have to deal with the pizza problem that I keep hearing about. Because we never have to dose for for pizza.

Scott Benner 1:20:15
Well, wait out Why? Because kids can eat cheese. She can't eat cheese, so she just doesn't touch the pizza at all.

Caitlin 1:20:22
Yeah. Okay, so have something else. All right,

Scott Benner 1:20:24
you'll never have to be involved in in the pizza Bolus.

Caitlin 1:20:28
Exactly. We got this, uh, this other pizza that was made without dairy. It has like, actually the same cheese replacement that she uses that she likes for her sandwiches and everything. But she did not like the pizza. So that's better.

Scott Benner 1:20:45
Wow. So is there any? Does any of this? Obviously the doop doop, I guess I'm gonna ask a stupid question. Because I don't know the answer to people grow out of allergies. That doesn't happen, right?

Caitlin 1:21:00
It does.

Unknown Speaker 1:21:01
It does. Yeah, it

Caitlin 1:21:02
does happen. The dairy, especially the egg, it can happen. Peanut isn't so common. But she's been tested for it. They said at the levels that at the severity of her allergies, chances are that she would never outgrow them. And actually, we had an allergist appointment a few months ago when they test her for everything. And she's still allergic to everything. So it looks like it's there forever. She's not one of those lucky kids that's eventually going to be able to eat it. And she doesn't qualify for all of those, those therapies that desensitize you. Because of the severity of her allergies with

Scott Benner 1:21:42
treatment, it wouldn't make it go away. It would just maybe lessen it a little. And if you just stay away from it, it's not a problem.

Caitlin 1:21:48
Exactly. It's easier to stay away from it. Because, I mean, I've looked at the protocols for them and gone through it, but they treat with steroids and steroids are gonna make our blood sugar terrible. So we just said you know what it is? It's just gonna be there for a while. And if when she's an adult, she wants to do it. That's fine. But we don't have time right now. Well, I don't think it's worth the risk. Yeah,

Scott Benner 1:22:10
I that sounds reasonable to me. How about the ADHD is the hope they're just a different medication that doesn't impact their mood, the same way.

Caitlin 1:22:19
Ah, I'm hoping that she learns to deal with it. I know that, that sounds really awful. But as much as medication helps, the ultimate goal is to be able to understand the way that your own brain works. And to learn to adapt the way you do things so that you can do things in a very similar way and be as effective as anyone else. tool to help that. But it's not like the crutch.

Scott Benner 1:22:49
So the hope here is the time and maturity and understanding kind of come together and, and help a little bit with that.

Caitlin 1:22:56
Yeah, and then maybe she won't need maybe as strong of a medication. Or maybe she'll go on to a different one. She's also tiny. I have to say you always said that art and like I listened to the podcast from the beginning. Thank you. I have to say I skipped a little bit in the middle. Oh, whoa, whoa, whoa,

Scott Benner 1:23:10
whoa, slow down a second. First of all, for people listening, it's not okay to skip. You start at the beginning of every episode. That's the deal. Okay. I watched your season. I listened to I watched the entire season on Netflix. That was not good. And I and I did it. Anyway, there were five seasons of a show. When I got to season three. I was like, This is terrible. But I soldiered through and I expect the same from all of you. But okay.

Caitlin 1:23:35
I skipped a few in the middle. But I did read like the headlines and a lot of the ones I skipped were like the the update to dex columns and all of those. Oh, they were just older. That's fine.

Scott Benner 1:23:44
You know those things? I didn't mean to jump down your throat. I'm sorry. That's fine.

Caitlin 1:23:47
I just to put it into context. I didn't mean like they weren't interesting. Although they were terrific to be like, I just wanted to be more

Scott Benner 1:23:54
up to date. You just didn't need to hear the announcement about the g4. Yeah, gotcha. I had I've never used right and it's not available anymore. I don't think so. Alright, that is acceptable halen. Okay. So and I guess too, so maybe there's a little hope with an algorithm based pump. Pick there is there is incremental gains to be made for you in here. Some of its time some of its technology some of its hoping, I guess. maturity Yeah. Wow. Oh my God, if one more thing goes wrong, is that the end? Are you just gonna like put some stuff in a bag and be like, Okay, well, goodbye.

Caitlin 1:24:37
Oh, man. I mean, it's always on your mind, right? Because you always have this thing in the back of your mind like okay, my other two kids, they don't have anything else. What if you know my oldest got diabetes, but my son is in the same grade as my oldest was when she when she got diabetes? Is he gonna get it two. And a few weeks ago, he was like, I'm so thirsty and he was drinking a ton of water. And you're not I chased him around the house. For 20 minutes with the meter until I wrestled him to the ground, and I got a blood sugar test. Because I was just so paranoid that Oh my God, he's gonna get diabetes too.

Unknown Speaker 1:25:09
Yeah. Now you mentioned you was really

Unknown Speaker 1:25:12
thirsty. He was just thirsty.

Caitlin 1:25:15
Like, I guess he hadn't had any water all day. And then all of a sudden, he went to the bathroom, and he's like, six glasses of water just down to them. And I'm like, how can an eight year old drink that much water?

Scott Benner 1:25:24
Now I can understand you being concerned? How about the like you said the worry about Michigan when she was younger? Is that gone? For the most part, you don't wake up in a sweat anymore? Do you?

Caitlin 1:25:36
know not so much? I think sometimes. There is that some of those days where I wake up and the first thing is like, wow, I slept really well. And then the second thought that goes into my head is Oh, crap. I have to check the Dexcom Did I miss anything? Yeah, so it's like, it's always the next thing in my head. Like if I slept? Well, it means that maybe I missed an alarm.

Scott Benner 1:25:56
I hear it. I've had that thought. Yeah, I've listened before all the technology, you wake up and realize you slept soundly through the night? And I think I go God is Arden. Okay, that would be like the first thing I felt like that I sleep through something. Now it's to be perfectly honest, like she wakes up at the same blood sugar every morning. But quite honestly, I you know, but there's a lot of years of, of practice in. Yeah,

Caitlin 1:26:27
actually, her blood sugar's great overnight recently, but I'm not. I'm because everything in her life has been kind of like a little experiment. The doctor was always there. The endocrinologist was always saying, Wow, you're so you're so quick to learn this stuff. You're so good at making your own adjustments. I'm like, Well, that's because I've had to adjust everything else in our lives. Yeah, that's what you do going like, Okay, I'm not sure. Like, maybe I think I need to increase the basil between this time and this time, and I would just do it.

Scott Benner 1:26:56
Yeah, you have time for something. I'll

Caitlin 1:26:57
go back to it.

Unknown Speaker 1:26:59
Exactly.

Caitlin 1:27:01
Well, I if she goes low, the Dexcom is gonna beep and I'm gonna know and I'll treat it and then I'll know like, okay, that wasn't the right thing to do. It's one

Scott Benner 1:27:09
of the most amazing aspects of diabetes that I've, I've, I've never really understood, which was that idea of like, well, we'll just wait three months until someone tells us something else. And I get the fear. But I never I, you know what, I guess I kind of misspoke there. Like, I had it too when I was, you know, first add it. But since then, since I've kind of gotten away from it. It's the thing that never ceases to amaze me. Like, it's the one thing that I think, Wow, how do people get caught in that? How did I get caught? Not even. But it's because it seems so obvious. blood sugar's high, use more insulin, right? blood sugar's low, use less insulin, you know, like, like that. That's sort of an idea. And it's fascinating that it continues to happen over and over and over again, day after day after day, and nobody can change. I'm helping a person right now. And I've explained this thing to them three days in a row, and every day they understand it. And then the next day, they don't do it. It just keeps happening. It's fascinating, you know, and they'll get to it eventually. But it's just like, You understand, right? Like this happened because of this. So you still need to do this. Yes, Yes, I understand. Next day. Did you do that? No, I just didn't have the nerve over and over again. So good for you that you just were like, I don't have time to. I gotta just do this, you know?

Caitlin 1:28:36
Yeah. I mean, they say like, the, I think one thing that the hospital was really great at at the beginning, when we went through all the trainings was teaching us to adjust it on our own. It wasn't just like, this is how you're supposed to feed them. And this is how much insulin you have to give. But they said, okay, but if you notice what I have to call for one sec. I know you're gonna edit that out. So we're good.

Unknown Speaker 1:29:01
You have a lot of hope for me, God.

Caitlin 1:29:02
So I know that. Like when I see a trend for three days of her going higher or lower at a certain time that that means there's an adjustment that needs to be made. And they showed us how to do that. And they gave us suggestions on it. And when we did the class for the pump, they did the same thing. They said, Okay, this is what, like, this is how you change it. And this like if you see a high here, this is where you want to adjust it. Because remember, there's a four hour action. So if the kid is going low at 2pm every day, maybe you want to adjust the basil that's before it.

Unknown Speaker 1:29:35
That's encouraging,

Caitlin 1:29:36
you know, instead of the one that's like at two because that's too late, the insulin is just going in, then it's not the one that's changing it.

Scott Benner 1:29:42
Yeah, that's good to hear. It really.

Caitlin 1:29:44
They taught us like really well, I was really confident in that. But obviously there's I know that there's people that go through the same trainings as us that won't be as competent in it. And that's just a personality thing. I think I mean, my husband's military or former military, so He wants to like he's like, okay, let's just do it. They told us we can do it. Let's do it. Let's try it. Well, not everybody, and that'll be like, okay, you know, I think like, I think I want to try this. I, I don't know if it's gonna be good. We'll see. But you know, make sure you can hear the alarm tonight because if I'm sleeping too much, I want to make sure you like wake up.

Scott Benner 1:30:18
Yeah. Listen, not everyone has your life experiences either. Caitlin, those those you? We went through a training ground for this stuff. You're You're as ready to do these things as anybody you know.

Caitlin 1:30:27
Oh, yeah, I did the boot camp.

Scott Benner 1:30:29
You certainly did. Look

Unknown Speaker 1:30:30
at the boot camp. Listen,

Scott Benner 1:30:31
how old were you the first time you ran away?

Caitlin 1:30:35
I'm 14. Yeah,

Scott Benner 1:30:37
that's ballsy. You know what I mean? Like, seriously, it really is like, Look, I better off somewhere other than here. I'm going. That's not that's not a not something a 14 year old I think. Does lightly

Caitlin 1:30:51
plan the runaway very well. I didn't really know where I was going. I just left.

Scott Benner 1:30:57
I'll just walk in this direction. Did you bring food?

Caitlin 1:31:00
Yeah, I brought some stuff with me. Nice change of clothes. New socks. You know

Scott Benner 1:31:04
why? Yeah. You don't want your feet to get

Caitlin 1:31:06
my bank card.

Scott Benner 1:31:07
They say your bank card or your 14? Yeah, you do

Caitlin 1:31:12
not like a credit card. Just like interact debit.

Scott Benner 1:31:15
Yeah, but you had some money in the bank?

Caitlin 1:31:17
Yeah. Get out of here. Oh, I had I had like a I walked. I used to walk a dog for an old blind guy. I walked a seeing eye dog cuz he was getting too old. And the dog was getting stopstopstop 20 bucks a week. I

Unknown Speaker 1:31:35
don't know why that struck me. You. It's a seeing eye dog. Its whole job is to walk. It needs to be watched for. Other than that to

Caitlin 1:31:43
while he was getting fat because the guy was like 90. Like he left the house like once a day to do groceries?

Unknown Speaker 1:31:50
Did you have to let the dog

Caitlin 1:31:53
and the The company said like weren't You're too old. We're not going to give you another scene I dog when this one goes. So he wanted someone to walk it to help keep the dog healthier for longer so that he'd have them?

Scott Benner 1:32:05
I say, did you have to let the dog lead you while you were walking so that it could kind of do what it was supposed to do?

Caitlin 1:32:11
No, as soon as they're like, as soon as the dog isn't on a harness. They're like a regular dog. Oh, when you put on the special harness, then they're working and they know they're working. But when I would walk them, I'd walk them on a regular leash. And he was like, just, I'd take them to the park and we play fetch. And

Unknown Speaker 1:32:25
that's fascinating.

Caitlin 1:32:27
Like, it's completely different. Like he's very well trained. And he would come when I call them and everything but he was like a regular dog when he wasn't when he wasn't on the hardest,

Scott Benner 1:32:35
like how to work in play mode.

Unknown Speaker 1:32:37
Yeah,

Scott Benner 1:32:37
that's that I find that I'm so glad we found. That's really great. I'm gonna end on that, because I don't think we're gonna learn anything more interesting than then service dogs have, like, different years. That's, that's really cool. Did we not go over anything that you want to talk about?

Caitlin 1:32:55
I don't know, oh, there was something I don't even know if it's like relevant or related or anything? Let's find out. But there's this like one thing when I'm on these groups, and I think it carries through to like all these type one groups. Okay, but I'm on and you have to understand them on groups for, you know, differently wired kids also, and I want groups for allergies. So I have all these different Facebook groups. And I don't read everything because there's so much stuff. But there's just one thing that just it blows my mind when I see it. And I understand. But people just generally get so up in arms about people making jokes about diabetes. Like this comedian is terrible person because they made a joke about diabetes. And we're going to boycott it, because it's horrible what he said. And like, you would never joke about someone else's disability or whatever it is. They all follow kind of the same line of thinking like, you wouldn't joke about that. Why is diabetes so funny, right?

Unknown Speaker 1:33:58
And this bothers you.

Caitlin 1:34:00
Yeah, it bothers me because, and I don't know if it bothers me, but I like to try to explain it and I gotten kind of tired of trying to explain it that you like we as people who live with people that have type one diabetes, or we're caregivers for people with type one. Or maybe we do have type one ourselves, we live that so when someone says something that's hurtful, or a joke, that's like a joke, this just out of off color for us. And it, it hits the wrong way or it rubs us the wrong way. We only noticed it because that's what we live. Right. But there's plenty of people in my other forums for allergies where this guy was joking about, you know, kid couldn't eat ice cream, because they had an allergy. And that's so stupid and it exists everywhere. If and these comedians are making fun of everybody. Yeah. But if you don't live it, you don't notice it.

Scott Benner 1:34:57
Right. That's a very rare sponsible way to think of it a very mature way to think here's what I think about humor, okay? It's very simple to me. Everything has to be able to be funny. Because of the exact point you said, like I noticed a comedian that I like, and for years, he would make fun of adopted people. And the first time I remember it hitting me right in the center of the chest. I was like, Oh, I'm adopted. That's not funny. And then I thought, Oh, no, wait a minute. If I wasn't adopted, what I've laughed at that. I would, so it is fine. And I just have a sensitivity to it. And so I just at that moment, said to myself, if you're going to appreciate humor, then funny is funny. The if it's funny, it's funny. And if it's not, it's not. But there's no in between. It's either funny, or it's not funny. And you can't pick and choose, you can't say, well, that's funny, right? But that's not it's not funny to be adopted. But it's super funny. To have a seeing eye dog need to take a walk, you know, like that, because that just doesn't work that way. And if you're trying to make it work that way, you maybe shouldn't avoid humor all together, because it's not. I mean, I get the like, my disease isn't your punch line kind of feeling. And the people who it's striking, are having such a hard time probably at that moment that it's hard to hear. But I have to say that if you put me in charge of the world, I think I would have agreed with what you said. I think you just have to let let comedians be comedians, and sometimes they're gonna say stuff that's offensive to you. And you know, what's the option? They don't ever say anything offensive to anyone. And then comedies gone just like that, you know,

Caitlin 1:36:43
you can turn it off, you can opt to not watch the show again, you can do whatever. But writing them letters about how you're a poor kid isn't the shouldn't be the butt of your joke. It's a little over the top. Because something needs

Scott Benner 1:36:59
to be the butt of the joke, or there won't be a joke.

Caitlin 1:37:01
Exactly. Like we're always laughing at something. Yeah, everything. Nothing's important. I've laughed at everything in my life. I've had to at some times, because it's a way to de stress. And you know what, sometimes I hear these jokes about diabetes. And I laugh at them. I mean, yeah, it hits me on a little more personal level, or the kid that has an allergy. And you know, well, maybe the kids shouldn't be alive or Darwinism or whatever. I laugh at it. Because, you know, I got to admit, in the back of my head, I'm a very like cynical and kind of dark person. I have a dark sense of humor. And it's funny. I mean, of course, it's my kid. It's different. But I can see how it's funny.

Scott Benner 1:37:41
Yeah. Well, it's the somebody's saying

Caitlin 1:37:44
you should go out and do that. He's a comedian. Yeah. It's a way of venting. It's a way of just expressing yourself. And you might not agree with it. And you might not just like anything, politics, you don't agree with it, or like, it's you. It doesn't mean the other person's wrong. Everybody has they don't agree with you. Yeah,

Scott Benner 1:38:02
well, people are multifaceted. They have different experiences, their context is different. And so they're going to find some stuff one way and some stuff another way. It just gets weird when you start telling people what they can say. Because it bothers you.

Caitlin 1:38:17
And it's a slippery, very slippery,

Scott Benner 1:38:19
I will admit, by the way, some comedians are just not as good as others. And so you can have someone tell a joke, and it comes off really poorly. And another person can craft a similar joke where it feels more well thought out and constructed and told, and they do hit differently. Like some of it's just, you know, and people were just being mean to be mean. That's probably hard to take. But there are some comedians who just go with mean, and there's, you know, some people like that, too. So just Yeah, like you said, like a avoided if you don't want to hear it, but also to hunt it down, just to be upset about it. As you know, if I didn't hear it, but you put it on Facebook, and I'm like, oh, man, I'm outraged. Like, you're outraged, like you didn't even know.

Caitlin 1:39:05
Yeah, we have or had a comedy festival in Montreal. That happens every year. That's a

Scott Benner 1:39:10
that's one of the best comedy festivals in the world.

Caitlin 1:39:13
Exactly. And there's a show called the nasty show. And the comedians go there. And from what I understand everything is very just very nasty. And it can be funny, but occasionally, we'll get like a news thing afterwards, like, Oh, this joke offended me because of this. And I'm like, it was the nasty show. You can't like pay for tickets to go to a show called the nasty show, and then complain that the joke was nasty

Scott Benner 1:39:37
come out of the me like this was very, very nasty.

Caitlin 1:39:40
Like, you have to expect it. We put it right in the title.

Scott Benner 1:39:45
Put it we put in the title. It's not a ticket. Well, I will say this about online discourse is that it's very cyclical. And if you're not around it for a long time, like I have been, you don't see it. It seems like there's this world war. Something's happening for the first time. But it's happening for the 9,000,000th time. And it's going to happen again, when you're gone. And someone new is going to come in and have this experience over again, there's only a certain amount of experiences to be had in the world. And you're watching people have them for the first time, over and over and over again, it happens in politics, every, every generation in politics. This happens, like you'll watch a TV show from the 80s to the 90s, that, you know, was a dramatization of politics. And you'll think, Oh, my God, that's amazing. The topics they're covering are the same exact topics that we're worried about today. And I'm like, yeah, cuz there's only so many topics. It's not being it's, it's not, you don't I mean, it's not magical, that they were talking about school integration in the 90s. And you're still worried about school integration. Now. Life is glacial, like, our, our existence is a blip. And, you know, the way you get to real change is over massive amounts of time, that far exceed a lifespan. And so, as every new generation comes in, they experience the same problems, they go about them slightly differently, because their context is different. And the older people look back and go, Ah, we were dealing with that in the 60s, like, yeah, and you still are, except you gave up on it now, because you have a vacation home. So this guy is going to talk about it. And it's just going to keep happening and happening and happening. And that slowly drags progress forward at a speed that none of us can actually say. And that's why people repeat themselves, in my opinion, although I'm a guy with a podcast, and I could be 100% wrong. So but that's what I say. So that's it. So I duly noted, Caitlyn would like all of you in the Facebook groups to calm down.

Caitlin 1:41:50
Keep calm and carry on.

Scott Benner 1:41:52
Here's the funny thing, Caitlin, those people who you see who are upset will one day mature into people who look back and go Hmm. I remember when I got upset about that. But turns out comedy is comedy. So everybody's just learning, you know?

Unknown Speaker 1:42:07
Yeah.

Scott Benner 1:42:08
This was good. I really appreciate you doing this. Thank you so much.

Caitlin 1:42:12
Thanks for talking to me. Yeah, I

Scott Benner 1:42:14
mean, even though you were Canadian. I did it.

Caitlin 1:42:16
I mean, I've heard you talk to other Canadians too. And those caribou jokes that was kind of waiting for them. Well,

Scott Benner 1:42:21
it's the only Canadian reference. I have Mounties. caribou jokes and hockey. I don't know anything about Canada. I mean, what do you know about America?

Unknown Speaker 1:42:31
Um,

Unknown Speaker 1:42:32
nothing. See.

Caitlin 1:42:35
I was gonna go into it. But no. I mean, honestly, most of our news is American anyways, because we just kind of like, you know, this nice thing happened in this community. Look what's happening down there.

Scott Benner 1:42:48
Why are there so many knife attacks in Canada? kaylynn.

Caitlin 1:42:51
Because we don't have guns.

Scott Benner 1:42:52
That is that that's why people stab each other because they don't have guns. Right?

Caitlin 1:42:55
Well, no, we shoot each other too. But we're just not as angry people. You know, they probably started off being like, would you like a slice of cake? stab, stab, because they were. Yeah, I'm

Scott Benner 1:43:05
telling you that the it's that I brought this up before but there's this amazing Twitter feed. It's about this one section. I don't even know where it's at. But they they cover the crime in this one section of Canada and just people stab each other at an alarming rate. That's the only crime. It's always just like, you know, man's naked in the kitchen thinks he's a bird. And then it's you know, stabbing. And then if somebody gets down like that, it's fascinating. But anyway,

Caitlin 1:43:32
I'm not gonna very strange part of Canada. Man naked in kitchen thinks he's a bird. Yeah,

Scott Benner 1:43:39
I saw that one time or I'm making it up. It's hard to know. But anyway, there are a lot of weird things. It's just very, I don't know. And then I have this feeling that that's what Canada is. Which of course it's not.

Caitlin 1:43:51
It's probably just the focus of our news. It works a little bit differently. You guys like the big sensational headlines?

Scott Benner 1:43:57
You guys want

Caitlin 1:43:59
a little bit of everything?

Scott Benner 1:44:00
Yeah. Kid found an old big wheel still works. wishes that was a Green Machine. Like that kind of thing. You're like, Oh my God, that's amazing. I remember Green Machine. But we call them rockets. Alright, kailyn get off of here. You must have something to do.

Caitlin 1:44:20
I'm supposed to be working. But it's okay. Well, thank

Scott Benner 1:44:23
you. I really do appreciate doing this. I sincerely

Caitlin 1:44:26
thanks for thanks for your time, of course.

Scott Benner 1:44:38
A huge thank you to one of today's sponsors. gvoke glucagon. Find out more about Gvoke Hypopen at Gvokeglucagon.com/juicebox. you spell that? Je VOKEGLUC AG o n.com. forward slash juicebox Don't forget you can find the T one D exchange at T one d exchange.org. forward slash juice box. And of course, that Contour Next One blood glucose meter is waiting for you right now at ContourNextone.com/juicebox. Thanks so much for listening. We'll be back soon with more. Who is will w e apostrophe Ll it implies more than one person. I am the only person here I'll be back soon with more. I should have just said I will I will sound better like the show is an entity but it's not an entity. I'm literally the entirety of it. Where is it? If you collect me in the show together is that will. Again not will like will Robinson or I died and left well, but well, like will w e apostrophe. Oh.

Unknown Speaker 1:45:55
Let's try it again. Both

Scott Benner 1:45:55
ways the wood works better. Thanks so much for listening. I'll be back soon with more Juicebox Podcast. Thank you so much for listening. We'll be back soon with more episodes of the Juicebox Podcast doesn't matter. Is it just in my head? I don't think it matters.

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#452 Learning about Teplizumab

With Francisco Leon, MD, PhD

Enlightening conversation with Francisco Leon, MD, PhD, and the CSO and co-founder of ProventionBio, the company potentially bringing Teplizumab to market if approved by FDA. Leon is a Spanish immunologist and self-described “autoimmunity aficionado” focused on eradicating autoimmune disease through early detection and prevention. He clearly and comprehensively explains how autoimmune diseases are similar, research supporting the unexpected link between coxsackie virus and T1D in studies, and research on Teplizumab which has a BLA under review for approval by FDA for patients at risk of T1D with a PDFUFA goal date of July 2021.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

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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 452 of the Juicebox Podcast. My guest in this episode is Francisco Leone and you are not going to want to miss a word of what he has to say.

You may recall that recently on episode 433 Karla Greenbaum was on talking about trial net. And during that conversation, she spoke about a drug called, oh, Ready, here I go, to please a mob to place a mob Teplizumab. I think that's right to close them off. Well, I might not be able to say it, but you definitely want to hear about it. What's going to come next is an hour long conversation that I found absolutely riveting as a person who has family members and loved ones impacted by autoimmune disease. I hope it strikes you the same way. Please remember, while you're listening 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, or becoming bold with insulin. Alright, a little more business, and then we'll get right to it. Let's let the music do its thing first, though.

Today's episode of The Juicebox Podcast is ad free. But that is because of the support of Omnipod, Dexcom, The Contour Next One blood glucose meter, Touched By Type 1 dot org, the T1DExchange and Gvoke HypoPen. What I mean by ad free is there won't be any ads. But there will be a break in the middle of the show where I try, in 30 seconds, to get out the links to all the sponsors of the Juicebox Podcast. And I'm going to remind you of some links that'll be pertinent to this episode. We'll see what I can do 30 seconds, I'll give it a try.

Francisco Leon, MD, PhD 2:10
Good morning, Scott. Thanks for the opportunity. My name is Francisco Leon, I am the Chief Scientific Officer and a co founder of prevention bio. I am an immunologist by training, and perhaps you can tell by my accent that I am from Spain. I've been in the US for over 25 years now. My entire life has been dedicated to try to find solutions for patients with autoimmune diseases. And that's what brought me to the US. I can tell you a little bit more about my background later if you'd like.

Scott Benner 2:48
Yeah, I am interested though, before we move on. What made you focus on autoimmune?

Francisco Leon, MD, PhD 2:53
I actually came to Auto immunity from the science side. But it quickly became personal. Let me explain that. My mom lost her kidneys to very severe stone disease. She was on the waiting list for a transplant. And she had to wait for eight years. She go ahead and transplant and it was rejected by the immune system when I was a teenager. And so you had to go back to dialysis. And that that influenced me a lot because I just couldn't understand why would they immune system reject perfectly functioning kidneys and condemn that her to a life tied to a machine. So I went to medical school. In the middle of my medical training, I took time off to do research and I became a bit of an autoimmunity aficionado because back in those days this is the late 1993 the first trigger for autoimmunity was found gluten triggering celiac disease, the first antigen and I focused on that, try to understand how does our immunity start? I finished my medical education. I did my PhD in autoimmunity and in celiac. And I learned that the mechanisms that lead to celiac are identical to other autoimmune disorders, such as type one diabetes, multiple sclerosis, rheumatoid arthritis, etc. It's always the same sequence of events. A genetic predisposition towards out immunity a vital trigger the loss of immune tolerance against yourself, tissue destruction, and then symptoms and complications. So, from very early on in my career, I wanted to be able to contribute to stop in this sequence of events. I did a residency in clinical immunology to have the patient side as well, not just that the laboratory side. And then I came to the US to work at the NIH, at NIH. And from there, I went to the pharmaceutical industry to translate all the basic research into medicines or solutions. And I was really fortunate that over time, I was able to contribute to a few drugs that have made a big difference in our community in diseases like psoriasis or inflammatory bowel disease at companies like Bristol Myers, Squibb, Johnson and Johnson. Ultimately, I get a little restless, because Big Pharma is really outstanding at doing the hard work to get medicines through patients. But they focus a little bit too much on chronic disease. They wait a little bit too long, until patients have too much damage, too many symptoms before they intervene. So I learned from one of the leaders in this field Professor height, and Dr. Height is both a professor and a Johnson and Johnson leader. He developed the theory that we should be focusing early on, he created something called the disease interception accelerator at Johnson and Johnson. And I totally bought into those concepts. But j&j was too slow to implement this new vision. So I left I became an entrepreneur, I started the company with the other co founder of prevention, Ashley Palmer, we started this small company called cell immune to start testing this concept of intercepting autoimmune disease. And to do it in a fast and cost effective way.

Cell immune was successful, we were acquired by Amgen, and that gave us the resources to then start prevention. Cell immune focused on celiac, but for prevention, we wanted to go all in into our community by tackling multiple targets upstream in the cascade of the immune events, the T cells, the B cells, the innate immunity, those are the three legs of the stool of autoimmunity. And we were very fortunate that our T cell drug plus a map was so successful at intercepting type one diabetes. That is what really put prevention on the map and the reason we are talking today, but I do want to mention that we continue working on celiac disease we continue working on B cell autoimmunity for example lupus as a Basal model disease. And we are the first company that has declared Our goal is eradication of autoimmunity by working upstream working in the early stages of the disease. So, we are now in a in a privileged and highly responsibility inducing position for us to lead this new era in medicine

Scott Benner 8:52
is the is the simple idea that you do screenings, find antibodies that say that this thing is likely to come for you and then jump in ahead of it.

Francisco Leon, MD, PhD 9:04
That is one of the main ideas you you could even go earlier than antibodies, you could go to the genetic predisposition as well. So as you know, Scott, were screening at birth for over 250 monogenic diseases and babies when they take a little bit of blood. Why not screen for autoimmune predisposition as well, it will just add a little bit of cost. But it could tell us if that baby is going to be predisposed to autoimmunity. And then parents could monitor you could try to avoid the triggers. But also you could try to be educated so that if disease does appear, and you can monitor that with the antibodies as the second test, you can react quickly and you can do intercepted before there is damage to the organs.

Scott Benner 10:03
Can I ask you? Do you know, are autoimmune issues becoming more prevalent? Or are there just so many more people on the planet that we see more of it?

Francisco Leon, MD, PhD 10:15
Both, they are truly becoming more prevalent as societies become cleaner. I don't know if you've read about this hygiene hypothesis, which now is no longer a hypothesis, it's proven. Back in the day, there were a lot of helminth infections. helmets are basically worms. There was a day in America when people had ring worms and things were not as clean as they are today. And the immune system has basically two types of responses, one type of response goes against one's and scolded th two response. And there is another type of response that is geared towards killing infected cells. And that is the th one response and they're balanced. Once the worms were eradicated, the th two arm was weak. And the th one arm began to dominate our responses. And that created the great susceptibility for the development of autoimmunity. And this is so fully proven. I'll tell you a very interesting anecdote. There's this region in Finland called Cordelia garden is a huge place that was split in 1945. Between Finland and the Soviet Union. In the Finnish side, as industrialization hygiene took over autoimmune diseases began to double every 20 years in terms of prevalence through prevalence. In the Soviet side, it remained flat. And the only difference was hygiene, it was the same genes, the same food, etc. So that led to research that finally proved the increase in auto immunities due to industrialization.

Scott Benner 12:17
Okay, I have to make sure I understand is the idea that we've done such a good job of cleaning things up that there were benefits we were getting from some of this, that we're not getting any longer?

Francisco Leon, MD, PhD 12:31
Exactly. us as we lost an enemy to the immune system, the immune system has began to turn against ourselves more often.

Scott Benner 12:43
Can I call you or Francisco? Of course, yeah, Francisco. Are you Are you married?

Francisco Leon, MD, PhD 12:48
I am. Alright.

Scott Benner 12:49
So I've noticed I've been married a long time that when my wife is mad at somebody else, she's nicer to me. Is that what we're talking about right now? You mean, our auto immune, our immune system has nothing to do so it's bored. And it's like, hey, let me take a shot at that pancreas.

Francisco Leon, MD, PhD 13:04
It is it is the case. The immune system has a finite set of resources. And when it is distracted with with an external enemy, it doesn't pay as much attention to the internal self.

Scott Benner 13:22
So George Carlin was right. you've ever have you ever heard the comedian George Carlin say that when I was young, we used to swim in the river with people's feces and I've never been sick a day in my life. That

Francisco Leon, MD, PhD 13:32
it is it is true. I know this, this sounds almost funny. But again, let me go back to Finland. Finland is the leading country in the world in terms of autoimmune research because they have the highest hygiene in the world together with Japan. and Japan is terrible. Now in terms of a topic dermatitis, things like that affecting 40% of the population as well, they are having similar problems there. So the Finns are really tackling this problem. First, they began to follow all consecutive newborns in the country. They did the genetic screening. And then they they started to look for auto antibodies. So imagine imagine doing that in the US all newborns, right. That's something that requires a national effort, but the fence did it. This is a study called deep and the IP stands for diabetes, interception and prediction study. So they identified hundreds of patients with D one d. m, because they had collected samples from those children and even from their mothers for over 20 years. every three months they collected samples. They found that there was only one commonality to all Have those patients, they have an infection by coxsackie B virus in the six to 12 months preceding the onset of T one D. And those children who did not have any other infection have no worms, nothing, everything's clean, they're there, their immune system over reacted against that coxsackie infection. And later it was found coxsackie infects the beta cells of the pancreas directly. The receptor for coxsackie is expressed inside the insulin granules is like a Trojan horse for coxsackie. So the immune system of those children over reacted against coxsackie destroyed beta cells. And in those who have predisposition to autoimmunity, they developed to 1d. And if the mothers had immunity against coxsackie virus, the children have 50% less to one day. That was the genesis of our vaccine project. That's how prevention started our first project was, we need to develop a vaccine for coxsackie B virus, because then we can reduce the incidence of T one T. The second step was okay, what kills those infected beta cells? That is that T cells, the activated T cells. So how do we stop those T cells in people who already got the infection, that is the police map. And that's why we began working on these two areas. Just to complete the finish story. Once they realized what was going on, in Finland now that our companies that sell Dirt, dirt from farms that are not clean, they put it in the baby's bonnets, in the socks. It's in little pouches. And then the baby gets exposed to that diversity of antigens, that distracts the immune system. Now, in the immune system, just like in life in society, diversity is very important. If you don't have diversity of exposure, that's when the immune system focuses on just one thing, and that's never good.

Scott Benner 17:26
I have to thank you. You're not going to see this coming. But my daughter is almost 17 years old, and she was diagnosed with type one when she was two, I am a stay at home dad. And I was at that time. And she had coxsackievirus right before she was diagnosed with type one. And I spent a lot of time. You know, I think like many people do, wondering what they could have done differently. And I always thought, I wonder if I didn't wash my hands enough before I made food. Like it was a ridiculous thought. But it's all I had to try to understand it. And you just made me feel better over. I really appreciate that. Thank you.

Francisco Leon, MD, PhD 18:05
Well, I didn't know Scott that she had coxsackie. You couldn't have done anything. coxsackie is a tremendously common infection. And it's just under recognized, because in most people, it only causes a very mild disease. It's an enterovirus, it causes some gut disturbance, respiratory disturbance. But over time, now we know it is not just a very likely cause of D one D. It's also a very likely cause of celiac disease, myocarditis, heart failure and heart transplant costs due to coxsackie, the number one cause of viral myocarditis, and recently also, potentially congenital heart defects in babies. So where we are now in the middle of our first clinical trial for this vaccine. And I think that's thanks to thanks to folks like you, educating people because most people don't know about coxsackievirus I hope that the trials will work and will be able to provide this vaccine so that people will have no infection by coxsackievirus

Scott Benner 19:25
Well, this this conversation alone leads me to believe that I can direct my children to in you know, when this vaccine exists one day to use it for their newborns and and hopefully they'll get to skip this diabetes hellscape that we live in. I have to tell you, we figured it out. Because, like we were we are, you know, as positive as we can be as a family that the coxsackie caused ardens type one or precipitated it because she got it and it seemed to go away but it didn't and then suddenly It was back again. And I remember our pediatrician saying that strange, you don't get this twice. So it was almost as if it never was gone. And then we started focusing on the other issues she was having, and sort of lost track of the coxsackie. And then in that it burst out again. And that's then then the the diabetes came in, of course, we lost track of the takasaki for a while, but then in retrospect, it just seemed obvious if it was a something that people get, it's so normal, and it's, you know, sort of like chicken pox and that you get at once you don't get it again, it must have never been eradicated from the first time as what we thought is that

Francisco Leon, MD, PhD 20:37
that's correct. That's correct. coxsackievirus almost never gets cleared fully. And that's 60% of children with T one D who had the good Sankey infection. Before the diagnosis, there has been a study in donors cadaveric donors, people who donate their pancreas for research when they die, and it's the same 60% the virus is still in the remaining beta cells, it's something you cannot get rid of. So, so here's how things are gonna change Scott in the future, because there's a lot of hope, come in, for Arden, and for Arlen kids as well. So a whole new future. First, we'll be able to screen for genetic risk, the the markers are already known, so that their babies will be identified as high risk for this disease that disease and then you can use a knowledge to reduce the risk secondaries, vaccines will help prevent these triggers and reduce the incidence. But then third, for those who still will be exposed to other viruses, because coxsackie is probably not the only virus that causes the one the as I said is 60%. So there's something else other viruses probably. So what happens next, you screen with antibodies, all you need to do is to screen two to three times in a person's life to catch those patients with early disease, H 223, h five to six, nine to 10 or perhaps in puberty, because once the immune system reaches puberty, there is a general resetting of the immune system. When the genital organs appear, there are new antigens. And the immune system takes a break to allow new antigens to appear. Otherwise, nobody will have genital organs, they will be destroyed by the immune system. So during that resetting, the risk of autoimmunity starts to go down. Right. And that's why the peak of diagnosis of T one D is age 1213, just before purity. So if we can get people past purity, we're gonna reduce to one the lot. And then what happens to those who still will develop it because somebody will still the immune system will restart and develop it. So we will have immunomodulatory drugs like the police map and other drugs in development. If and when these drugs are approved, they can be given to people who have the antibodies, because the antibodies indicate the disease is already ongoing. It's just that you still have enough beta cells that you don't have symptoms. But do you want these truly a continuum? Once you get the infection, you break tolerance. Once you break tolerance, you develop antibodies, you start losing your beta cells because the T cells kill the beta cells. And it's a countdown. Once you have two or more auto antibodies, there are four total different auto antibodies is no longer a matter of if but when will you develop clinical q&a. And that's when the countdown starts for us to intercept as well. The sooner we intervene, the more beta cells the patient will have. And we can even prevent insulin dependency if we rescue enough beta cells. And I will tell you in a minute about the results of our clinical trials at risk to illustrate this concept of early prevention, but I just want to complete the continuum but by talking about what happens once you develop clinical t Wendy what happens if somebody has lost all of their beta cells? Is there a hope there?

Scott Benner 24:58
Alright, you ready? There. Second Let me see what I can do here and go check out the Dexcom g six continuous glucose monitor at Dexcom comm forward slash juice box learn more about the Contour Next One blood glucose meter at Contour Next one.com forward slash juice box get a free no obligation demo of the Omni pod tubeless insulin pump or see if you're eligible for a free 30 day trial the Omni pod dash at my Omni pod.com forward slash juice box support the T one D exchange T one d exchange.org. forward slash juice box. Do you want to check out the glucagon that my daughter carries? g Vogue glucagon.com forward slash juice box? And of course always throw your support behind touched by type one.org Would you like to learn more about the company we're hearing about today? prevention bio.com pr o v n t i o n bio.com all these links are available at Juicebox Podcast comm or right there in the show notes of your podcast player. And if you're looking for those diabetes pro tip episodes that you've heard so much about, they're in there, too. They begin at Episode 210. And you can also find them at diabetes pro tip.com. I do. Let's look hold on I started at 2506 and went to 2556. I was like 50 seconds. Alright, so not 30 seconds, but not bad. And no full ads, right? Please support the sponsors when you can they keep episodes like this going, they keep the show free. They keep your juice box flowing. Let's get back to Francisco. There's a lot more coming. It's a really great episode, I thoroughly thoroughly enjoyed making this for you.

Francisco Leon, MD, PhD 26:49
Is there hope? The answer is yes. As you have seen recently, tremendous progress has been made to generate pancreatic beta cells from stem cells. So there's going to be an opportunity to replenish beta cells in our them and in other people who need beta cells. But we still need to overcome one issue. When you transplant beta cells into a patient, this is a transplant, the same thing is gonna happen that happened to my mom, the transplants going to be rejected by the immune system. And this is called Allo rejection. It means a reaction against something foreign. The second issue is if you have to and the and the cells are truly beta cell looking, they are going to be destroyed by the auto immune attack. So you have two problems. Again, that's where these immune modulating drugs are going to be helpful. Because they will stop the outflow and the auto attack. We have already data that shows that the police map reduces both Alo and auto attack of beta cells. So in the future, and I'm not talking 50 years from now I'm talking five to 10 years from now, it will be possible to transplant stem cell derived beta cells and give the person map or another immune modulatory drug at the same time to induce tolerance against those cells. And then we will be able to start talking about the cure 41 D, D one D is going to be the first autoimmune disease to be eradicated by vaccination by early screening and detection by early treatment, and finally by replenishment of beta cells.

Scott Benner 28:56
So you'll you'll put the beta cells back, and then you'll protect them from being attacked. And then you'll stop the body from doing what it did the first time with the plus map

Francisco Leon, MD, PhD 29:10
with the plus map and with other approaches. It's just that the plus a map is the first

Scott Benner 29:15
is encapsulation one of those ideas the idea of putting the cells inside of sort of a packet that's protected.

Francisco Leon, MD, PhD 29:22
Yes, so encapsulation will help. The problem is, so far it hasn't worked. Because when you put cells inside the capsule inside the body, there is something called the foreign body reaction. And it's another immune attack is a bit different. This attack is not specific against the beta cells because the immune system doesn't see the beta cells once they are in the capsule, but it reacts against the capsule. And it It causes something called fibrosis that surrounds the capsule with a material that makes it difficult for insulin. When to come in and out. So there are groups now working on better capsules, and we certainly root for them. But in our opinion is gonna take multi pronged approaches here to succeed, okay, perhaps a capsule that is semi porous, it allows some transit but not not a lot of so that you have some protection afforded by the castle. But still immune modulation to have a more specific reduction of the reactivities.

Scott Benner 30:38
It's kind of fascinating how well your immune system works, but that how stupid it is at the same time, isn't it like that a foreign body could be in your in your inside of you. And that your immune system could look at it and say, well, we can't kill it. So we'll surround it so well that it can't pass in or out of what we surround it with. But it can't look at your pancreas and go, hey, that's ours. Let's not do that. It's um, it's fascinating how strong and yet unguided it can be.

Francisco Leon, MD, PhD 31:08
Yeah, it? Well, the problem is it's it's this trigger, the trigger is what fools the immune system, because the immune system is programmed to attack cells that are infected, so that the infection doesn't propagate, right. And we're just unlucky that certain viruses have learned to infect the beta cells, because they are generally well protected. The beta cells are normally the last thing the immune system attacks, think think that in our entire body, there's only one gram of beta cells is so precious, is it has some mechanisms called immune privilege. And that's why the viruses hijack it and go inside because they know if I'm, if I'm inside the beta cell, I have a high likelihood of survival here. But eventually, the immune system finds a way to kill the cell, kill the virus, but then the collateral damage is type one diabetes. So

Scott Benner 32:08
the coxsackie hides in the beta cell, because it's such a protected spot. And the auto, your and your immune system does such a good job of rooting it out that eventually it gets to it.

Francisco Leon, MD, PhD 32:19
Exactly. Wow.

Scott Benner 32:20
So it's like a crab trying to hide in a shell under the ocean and the fish that go by and just sift, sift, sift, and eventually hit one and there it is.

Francisco Leon, MD, PhD 32:28
Exactly. Wow,

Scott Benner 32:29
no kidding. I did not expect this to go this way. I'm having a good time. And at the same time, I hope you'll forgive me, I'm much more emotional than I usually am. While we're doing these things. So I feel a little flush at the moment. I don't want to I don't want to lose track of what I'm supposed to be doing here. Okay, so how close so I have people from trial net on whenever they want to come on, because I love obviously what they do. And it's starting to, to please them ABS an interesting name, because it's a word that used to get thrown around years ago, like, oh, there's a drug, you know, and now all of a sudden, it's like, hey, this drug might be coming and it is coming. And like, where are we at? And what's the application real world without the rest of the stuff needing to be figured out yet? Like what can we do right now?

Francisco Leon, MD, PhD 33:17
Right? And thank you, Scott, for mentioning trialnet because they are the heroes in this story. Prevention is standing on the shoulder of giants. Here we are the last cog in the wheel. We take all of this research, and we translate it into a drug that can be brought to patients right then I don't mean to minimize our hard work and the team's hard work. The prevention team is amazing. But it's been 25 years since academic folks like Jeff bluestone, Kevin Harold and the trial net group, Carla Greenbaum Bama trial net, and everybody it's hundreds of people who have been doing one study after another after another. And things not always worked. And that's what you were referring to at some point, the prisoner was considered the failed drug. Because one trial failed the primary endpoint. The newly diagnosed protege study failed the primary endpoint. But prevention, we recognize that the trial failed the drug. It was a problem with the endpoint. The drug still did the same thing how you have always done it has always shown protection of beta cells. That's what we acquired to place a map and then try on that conducted the at risk study tn. While we are conducting a repeat of the protege study in newly diagnosed patients so that way, we can cover both sides of the coin. The at risk data will help us If the FDA agrees, provide this drug to patients who have early disease, the so called at risk, which just means early disease, and then the the new study, it's called protect, will help us provide the drug to newly diagnosed patients, but with the same exact mechanism, protect the beta cells from the outer immune attack. So you ask the question, what can we do now? So it's it's coming, it's coming. The so called producer date, which is the technical term for the date when the FDA is going to opine on the blizzard app is July the second. So it's imminent, in just a few months, we are going to know if the FDA considers that the data merits approval. And if they don't, they will tell us what else is necessary. But we're hoping that we should be able to provide this drug to patients in the very near future so that we can stop intercepting disease. The other thing that we need to get out is the need for screening. Because if we have the drug, but folks don't know that they have the preclinical disease, the pre symptomatic disease is not going to help them. So we need to get out to families, and, and just show families that if they get screened, they can prevent disease in other family members. And it's not just the children, sometimes the parents develop the disease years after the children. So everybody needs to get screened. And now there are great initiatives in place to facilitate this jdrf has to one detect, do you want detect is an amazing program, it's at home to just go online, you sign up. If you haven't students, you pay $55 that is covered by students, if you don't have incidents, prevention has subsidized this program, we provided the grant, and you only pay 10 bucks to get all the auto antibodies done the panel, you take a drop of blood from your finger with a little Lancet, put it on a filter paper, send it on the mail, in a prepaid envelope. And then a few days later, you get your results at home in a secure email. And it will tell you if you have at risk of developing clinical T one D or not if you have auto antibodies or not. So this is a huge, advanced national program offered to everybody. Obviously, families are the most aware. But even the general public should start to think about this, it doesn't really hurt to get tested. And if you're negative, you have that peace of mind, if you're positive, now you have knowledge that might help you stop the disease.

Scott Benner 38:05
That's excellent. No, I can't, I can't say enough of what I think of what everyone's doing. I and your date is July 2, so you're coming up by so say this happens, then I send in my paper and you find antibodies. And it's past July 2, and the FDA said okay, I start taking the drug and it does what.

Francisco Leon, MD, PhD 38:29
So if we get approved and you are positive for two or more auto antibodies in this at home test, you go to your doctor because we want your doctor, your endocrinologist to confirm the results and to take additional blood because when you have two or more auto antibodies, you have early stage to one day. But the question is how advanced is it? Do you already have these glycemia which is when you have abnormal glucose levels in your blood? And that's an important question. Because if you have these glycaemia you have 75% chances of developing clinical T one the insulin dependent in five years, and you have 30% chances in one year. So that means it's urgent. But if you don't have this glycemia the risk is lower is 44% in five years, and then you may is your choice, you may want to wait or you may want to act that that question is still a bit unresolved. What happens without dysglycemia our application to the FDA is for patients with auto antibodies and dysglycemia. We will recommend that then your physician considers the police map. So then the plisson map is a drug that He's given us 14 days of infusions every day between 30 minutes and 60 minutes. The reason it's like This is to prevent and minimize side effects. by splitting the dose, in very small doses that are given daily for 14 days with this has been tested over all of these 20 years of research, that if you do it this way, the safety profile is well managed. So you will receive infusions for two weeks. And that's it. The pleaser mob is not a chronic drug. And that's a big differentiation from other therapeutics that are in the market. And the reason is that we're catching the disease early and resetting the immune system. So we don't have to give this drug every month for life. as other drugs need to be given one, once you have lost your your function of your organic cetera, it's a chronic disease. Here, we're intervening early. And that affords us the ability to just those once the data is as follows. After you get two weeks of the person map, that median, the median is basically the average delay to developing clinical to end with insulin dependency is three years to three years delay, on average, after two weeks of therapy, is what the data showed that some patients will have one year of delay, the vast majority will have at least one year, some patients have eight or more years of delay. And then what happens next, that question, we don't know the answer yet, we believe we should be able to those again. And, again, they lay the disease for another number of years. But those data are not available. That is work that we are going to undertake now. But our hypothesis is that by providing the person map a few times in the life of a pre symptomatic patient, we might be able to indefinitely delay the disease. And then if you indefinitely delay the clinical disease, you're almost talking about the functional cure in a way because you never need insulin.

Scott Benner 42:36
Yeah. Wow. That's amazing. I'm see as you're talking, it keeps occurring to me that everything you know about this comes from what your mother went through, and, and how grateful I am, then everybody will be when they hear this, that her experience led you in this direction. You know,

Francisco Leon, MD, PhD 42:57
thank you, Scott. But I obviously I am I owe everything to my mother. But you you you owe more to others than to me because I'm really just less than the last cog in the wheel here. There's so many people who have worked on this for so long. Let me mention that our chief medical officer, Dr. Lenny Ramos, who is the transplant nephrologist. And that's the reason I met her because again, the kidney transplant. She actually worked with the pleasant lab many years ago in an academic setting. And she is a big part of the reason why we pay attention on the police a map and acquire the drugs. So it just cannot be under emphasized how it takes a village to do this. Hundreds and 1000s of scientists and physicians and more importantly, the volunteers, the volunteers in the clinical trials. They they take the risk to help society and it's it's they are the real heroes,

Scott Benner 44:09
we'll know for certain I mean, I'm just hearing your you know, I see your background here. And then in my mind, I'm thinking of all the just like you said, all these other people, and I wonder what all their impetus was like what what what got them to lean in this direction. Take the risk, you know, if they're going to be involved in a study or devote their lives work in this direction, it's just very, you'll never know. You know, one day when you know if if what you say is true if there's a future where my children's children can take a vaccine that stops them from getting coxsackie virus that stops them from having an auto immune response. Don't ever know how lucky they are or where all this came from. You know, it's it's really fascinating. Thank you. Thank you. I don't want to stop you because you are doing such a great job but I do have some questions. In front of me, are we at the point where I should ask them to you? Or do you have more that you want to add?

Francisco Leon, MD, PhD 45:04
Now, please, let's go with your questions.

Scott Benner 45:07
Okay, so these are all from people who listen to the podcast. One person wants to know if the effectiveness is in any way can connected to the age of the patient.

Francisco Leon, MD, PhD 45:18
Yes, there's no, we have the data is published, the effect of the blessing man was similar in children and adults.

Scott Benner 45:28
Okay, there's next question which you've covered, they wanted to know about what you would need to qualify to use the drug besides antibodies, but you've gone over that they'll need to be some world glucose testing, I guess, right, making sure that you are on your way into the process of not being able to hold back your own blood sugar anymore. Right. Do you have any plans of using this on people who have had type one forever to see what impact it has on them?

Francisco Leon, MD, PhD 45:59
Yeah, that's a great question. The answer is yes. But I need to qualify the answer. So on one hand, the low hanging fruit is the combination with beta cell transplant, in my opinion. But it is true that, you know, even in patients with long standing disease, there is always a little bit of C peptide, which is the marker for beta cells in the circulation in the blood, there is always a little bit of C peptide that can be found, comes up comes down, it seems that there are always some beta cells that start to grow, and then disappear. And the question is, is that an attempt by the pancreas to regenerate the beta cells that is quickly overcome by the immune system. And then you could potentially give the police a map at that time, when those beta cells are starting to grow, before they are destroyed. But this is purely speculation. And we don't have any data to support this other than this observation that even even after 50 years of T one D, you still have some beta cells in your pancreas.

Scott Benner 47:18
Okay, are there any side effects from taking the treatment? Either short or long term?

Francisco Leon, MD, PhD 47:25
Yes, all drugs have side effects. So with the prism app, the observations are related to the mechanism. It's an immune modulating drug when it gets into a patient's body. And it deactivates that T cells that killed the beta cells, that the activation results in something called release of cytokines for a few days, when the cytokines are released. About a third of patients experienced a skin rash. Just like if you had like analogy is a bit itchy. It only lasts a few days, and it resolves by itself. The second observation, the patient doesn't see this, but the doctors will see that about two thirds of the patients have a change in the white blood cells in the circulation, changes in the numbers. And those changes also are limited in time, everything's going back to normal within four to six weeks. And because the plasma is given just as a two week infusion, we haven't seen any side effect long term, we have data up to seven years, there hasn't been an increase in infection, there hasn't been an increase in anything else. So at this time, we'll feel comfortable as a company presenting this data to the FDA for their evaluation, and we hope that they will agree with our assessment.

Scott Benner 48:59
Excellent. This is the show has a worldwide audience and their people are wondering outside of the US is are you working on getting approvals in any other countries.

Francisco Leon, MD, PhD 49:12
Indeed, we are actively discussing with the European regulatory agency and now with the British regulatory agency as well after Brexit and with countries in the Middle East, Israel etc. We are trying to do as much as we can. But let me also mention that we are a small company. And the biggest thing that we believe could help us bring this drug worldwide will be a partner. We are actively seeking partnership with a big pharmaceutical company so that they will help us expand access outside of the US. In the US we can manage but outside of the US We will need the partner.

Scott Benner 50:02
Yeah. Well, um, I don't bring this up very often. But my wife is a drug safety professional for her entire, like, adult life. And she's incredibly good at it. And if I let her hear this episode, she's gonna want to come work for you. So

Francisco Leon, MD, PhD 50:20
all right, let's talk.

Scott Benner 50:23
It's really amazing. Well, you have to reach back to your old friends now. Right? You didn't burn any bridges leaving j&j did you?

Francisco Leon, MD, PhD 50:29
know, I didn't, I didn't know this. I am. I am doing what what they told me to do. Yeah. So suddenly j&j is a wonderful company. As you know, they are now really, really busy manufacturing hundreds of millions of doses of COVID-19 vaccine. So that that actually is impacting a little bit of progress in other areas. Yeah, yeah. Everybody's logically focused on COVID, the FDA, the pharma companies, but I think we're all seeing the light at the end of the tunnel with COVID. And then we should be able to focus on these other problems. And actually, as you know, COVID-19 affects predominantly people with diabetes, and COVID-19 can trigger diabetes. So

Scott Benner 51:20
we had a gentleman on a couple weeks ago, who got sick, had a stroke, develop type one diabetes and needed a five way bypass. Terrible.

Francisco Leon, MD, PhD 51:30
Hope he made it.

Scott Benner 51:31
He's doing well, actually. It's fascinating. Yeah. Listen, if for people who can't believe what you just said, my wife just stood in the kitchen and explained to me the other day, the reason we got through the vaccine so quickly, is because companies really did put aside a lot of their other work and focus their employees on just one thing. And I can personally attest the fact that she's been sitting in my dining room for 12 to 18 hours a day, working on this for the last year. So it,

Francisco Leon, MD, PhD 51:59
thank thank you to her and all others who who have given us throughout time.

Scott Benner 52:06
Yeah, no, but I, to your point, like we do also need to get back to looking at other things like this. Just real quickly, as I go to the next question. Claire would like you not to forget Australia, she says Australia always gets left behind and type one diabetes. So

Francisco Leon, MD, PhD 52:18
yeah, we are looking, we were talking to Australian folks as well. It's such an innovative country, and they have a great system there for screening. Again, going back to screening, that is the key. And Australia is one of the few countries in the world with with a screening program, a screening program that we don't have in the US in the US, it's only trialnet and a few other programs, ask in Colorado, etc. So we all need to enhance screening lobby, so that this becomes more of a national effort.

Scott Benner 52:52
What ages did your FDA submission cover?

Francisco Leon, MD, PhD 52:56
Our current submission is h seven and above the trial started at above age seven, so eight and above to 45. But we probably will. If we believe that the drug should at least get approved age eight, and above, okay,

Scott Benner 53:19
is an there's always the sign um, I know you're not you wouldn't be telling anybody to do it. But doctors could see the value and use it off label or no,

Francisco Leon, MD, PhD 53:30
we can certainly not recommend that. But a doctor can always use judgment and look at the scientific data, look at the clinical data, look at the label, and then determine what's best for their patients. And that's something that we as a company, all we can do is to continue doing trials. So we have now in place, all the plans to study age zero and above children from from birth and to expand into other populations as well and do combinations and with beta cells, etc. Expand the label to maximize access.

Scott Benner 54:12
auto immune markers, like you said, you need to have to Is there any efficacy change if people have more markers?

Francisco Leon, MD, PhD 54:21
Yeah, that's another great question. We have cut the data in so many ways to try to answer that question. And the FDA has done that as well and clinicians. And at this time, what the caveat is that the study, the pivotal study, at risk, TN is a small study. So when you start cutting the data in many different ways, you end up with very few patients in those groups. And it's a bit hard to make conclusions, but our conclusion is that the drug has the potential to help every patient as long as they have beta cells. So the only group with may not see benefit is when the C peptide is undetectable that those patients may or may not have enough beta cells to protect. But as long as you have detectable beta cells, given that the mechanism of disease is similar in everybody, it's all driven by the T cells. We see benefit in across the board. Wow.

Scott Benner 55:27
Wow, that's amazing. I have one more here. It just slipped away from my eyes. Oh, are there any unknown drug interactions?

Francisco Leon, MD, PhD 55:36
No, because this is a biologic drug, a monoclonal antibody and biologic drugs. They typically don't have drug interactions. They're highly specific. So actually, in terms of FDA approval, you don't even have to study this because it's well known that biologics don't have drug drug interactions

Scott Benner 55:57
are things really moving that way. Like ideas like stuff like Xolair for asthma or chronic urticaria, stuff like that, that that's a biologic as well. Do you think the industry is paying more attention to that now? Or do we just understand more so we can, can work in that space better?

Francisco Leon, MD, PhD 56:18
I'm both, I think there is a lot of progress in the design and manufacture of biologic drugs, which are more specific than oral drugs, pills and tablets. There is a place for both, right? The problem with biologics is that they have to be injected. And some people don't like injections logically. So there are instances when appeal or a capsule can get you through a disease and there's no need to go for injections. But if you are looking for something highly specific and safer, because it doesn't have these kind of interactions, and something that can be given less often. Because the biologics typically have very long effects, then biologics are a good solution.

Scott Benner 57:13
Yeah, I suffered low iron a year or so ago, and the I and the the oral just was not doing it for me. So I took an infusion a couple of times, to bring my ferritin levels up. And it was amazing how quickly it worked, compared to what what was happening with the oral meds?

Francisco Leon, MD, PhD 57:33
Well, Scott, let me make a plug now, for celiac disease, because celiac disease is the number one cause of low iron anemia in the US of unknown origin, and is highly associated with with Type One Diabetes. So just like folks need to screen for d&d Auto antibodies, family members of d&d patients should also take a celiac test, if they have any of these unexplained manifestations, as the same is just a finger stick and and looking for auto antibodies against the celiac antigen.

Scott Benner 58:12
And that celiac can can be present and impacting you in ways without you feeling sick to your stomach when you eat food. That's correct.

Francisco Leon, MD, PhD 58:21
It's not common. It's not common, but about 20% of patients with celiac don't have gastrointestinal symptoms. Okay.

Scott Benner 58:29
That's interesting. Well, okay, is there anything that we missed, or we should have said that we didn't, I don't want to leave anything out.

Francisco Leon, MD, PhD 58:38
I really appreciate this opportunity to get the word out, because raising awareness is the most important thing now. so that people can benefit from these advances we've discussed. So just thank you for all the work you've done to educate your audience. And if anybody has any questions, we have our info at prevention bio.com if you have any questions, we'll make sure to address them

Scott Benner 59:10
I'll put a link in the show notes so people can get to it I just genuinely appreciate you doing this. And that and that you were able to make it work in your schedule because I was I was so tight I didn't know where to put you and I really wanted to have you on so thank you for for being flexible like this.

Francisco Leon, MD, PhD 59:25
No, thank you Scott.

Scott Benner 59:30
Huge thanks to Francisco for coming on the show and doing such a great job of explaining to please a map that I get a pleasant map I have it I might not have it. Anyway, I found everything about this hour to be incredibly uplifting and hopeful. I hope you did as well. Thanks also to on the pod Dexcom touched by type one the T one D exchange, Gvoke glucagon and the Contour Next One blood glucose meter. The advertisers make the show possible. They give me the time and the freedom to do these recordings, edit them and get them to you. So all my thanks to them, please, if you have a need for any of those devices, and you'd like to learn more, use the links that are provided in the show notes, we check them out. It'll help keep the show free. Before I go, let me thank you some really amazing reviews were left recently on Apple podcasts for the show that I greatly appreciate. Thank you so much to everyone who takes the time to rate and review the show so positively. I want to remind you again, about prevention bio.com. If you go there, I've been doing this this morning and click on their pipeline, you can read about the drugs that they have, and what they're hoping to do with them and where they are along the process. It's very, very interesting. It's fascinating worth a little bit of your time. The show has resources that we hope you use, and by we I mean me as I'm the only one here. The diabetes pro tip episodes, as I mentioned earlier, begin at Episode 210. And they're also available at diabetesprotip.com at that same link, you'll find all of the defining diabetes episodes. Of course, you can always go to Juicebox Podcast comm to find those things. And if you're on Facebook, and you're looking for an incredibly supportive group of people talking about type one, you're looking for the listeners of the Juicebox Podcast. That group is called Juicebox Podcast type one diabetes. It's a private group. It has about 10,000 people in it, and the conversations are just there. Excellent. I hope you enjoyed the show today. I really enjoyed bringing it to you. Next week, we'll be talking to someone who eats low carb, who has type one diabetes, we'll be talking to Elizabeth, the founder of touched by type one, and much more. If you're listening in a podcast app, please press subscribe. If you're loving the show, please share it with someone else. And if you're listening online, that's not how the kids do it anymore. You can if you want I'm not going to hassle you but your apps on the phone way better ways to listen to podcasts. Thanks for listening. Thanks for subscribing. I appreciate it when you share the show with others and review it. I hope you enjoyed today's episode. I really enjoyed bringing it to you. I'll be back soon with much more

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