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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 695 of the Juicebox Podcast.

Today we're going to be speaking with 17 year old Morgan and her family. Morgan has type one diabetes, and she is allergic to insulin. Please remember, while you're listening today that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. This is a standalone episode, but if you really want the full context, you should also listen to episode 504. Allergic to insulin with Sasha and episode 578. Allergic to insulin part two, with Dr. McCann, Who is today's guest, Morgan's doctor. Hey, if you're at type one who is a US resident or a US resident who is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. Join the survey take during the survey. Join the registry, take the survey. support people with type one while you support the Juicebox Podcast T one D exchange.org. Forward slash juicebox. This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter. Learn more and get started today at contour next one.com forward slash juice box, you can use the meter that my daughter uses. It's small and convenient, and very, very accurate. Contour next one.com. Forward slash Juicebox. Podcast is also sponsored by touched by type one. They're an organization helping people living with type one diabetes. They're touched by type one.org. They would love for you to check them out and find them on Facebook and Instagram. All right, I'm gonna hit record. And then I just need to test everybody. So just Morgan just say hello.

Morgan 2:18
Hello.

Scott Benner 2:19
Perfect. Go ahead doing Kyoto. Hello. Excellent. And then of course, Jennifer. Hello. We are all being recorded. Just lovely. All right. Okay. Let me wrap my head around how we're going to do this. Usually I just tell somebody to introduce themselves. But why don't I do that a little bit. Oh, hold on a second. Before we get going. Whoever's computer's making the sounds is that a PC or a Mac? PC PC? Do you know how to stop it? Because I only know how to stop it on the Mac.

Dwayne 2:56
I was just adjusting the volume, so I won't be doing that again.

Scott Benner 2:59
Okay, all right. Oh, I thought it was like you got an email or something like that. All right. You know what? Let's just do it the way I usually do it. So let me tell you this. You don't need to use your last name. As a matter of fact, unless you really want people to know who you are. Don't. That's up to you guys, though. I don't care. Honestly. Why don't we just sort of go around the horn like Jennifer, go ahead, introduce yourself.

Jennifer 3:26
My name is Jennifer. We are living in Texas. We've lived here for three and a half years before that. We lived in Utah. We have a daughter that's type one diabetic and she's allergic to insulin.

Scott Benner 3:42
Okay. And that's you right, Morgan? Yeah. How old are you?

Morgan 3:48
I'll be 18 on September. Oh,

Scott Benner 3:50
my daughter's gonna be 18 in July. Are you going away to college?

Morgan 3:54
No, I still have senior year. Oh, no

Scott Benner 3:57
kidding. Oh, well, then you're gonna have a good time. And Dad's here, right? Yeah. Go ahead. Introduce yourself.

Dwayne 4:05
Hi, I'm Dwayne. originally born in Texas. I had moved to Utah for several years. Before I met Jen and the kids and we ended up getting married. And when my kids are here, we have, you know, six kids all together. And then we move back here for work and close with my family. Oh, that's

Scott Benner 4:26
amazing. So, Jen, you have how many kids of your own? I have four for Morgan the only type one? Yes. Is there any other auto immune among your children or your side of the family? Celiac? hypothyroidism, anything like that? Nope. Just the type one. Okay. And Morgan, how old were you when you were diagnosed?

Morgan 4:51
I was seven. Oh, okay. Well, this

Scott Benner 4:54
is gonna be interesting, isn't it? I'm gonna give a little backstory now. So I did an episode with Sasha who was right, allergic to insulin. And not long after I put the episode up. I got this email from a doctor who has since been on the show, so you can share her name Morgan, what's her name?

Morgan 5:15
I'm Bonnie McCann,

Scott Benner 5:20
you call her body?

Morgan 5:22
Occasionally. Nice.

Scott Benner 5:25
She's very nice. I had the opportunity to talk to her a number of times. She was on Episode 578, which is called allergic to insulin part two. And Sasha was on 504 allergic to insulin. So I did not know until I heard about Sasha, that this happened to people just absolutely crazy. She came on, she explained what was happening to her. And I just I don't know, I was stunned by it. So Morgan, I want to start with you a little bit. Can you tell me when this began? And how it impacted you? Do you know how old you are when it started?

Morgan 6:00
Yeah, um, probably a year or so after I got diagnosed, it started starting to get painful and getting really large lumps and swelling where shots were done. It was just getting bad for it and got progressively worse.

Scott Benner 6:21
So you would say that almost 10 years ago this began. Yeah. And it was only with your fast acting insulin.

Morgan 6:29
Um, no. It was also my long acting.

Scott Benner 6:32
Really. Okay. So whether it was basil or or your meal and your Bolus insulin, you were getting painful sites. Bumps, was there itching or burning or anything like that?

Morgan 6:45
Definitely burning. Yeah. Okay,

Scott Benner 6:47
so Wow. And there was never a break. You never once gave yourself like an injection. You were like, Oh, it didn't happen. This time. It was consistent. Okay. What's the level? You must be like the toughest girl in Texas, right? Like you? Do you like fall over and bump yourself and be like, it's nothing. I just keep going. How do you go? Yeah, right. I mean, how do you? I guess it happened to you when you were little. Right. So So Jennifer, can you can you tell me a little bit about the first time this started to happen, it must have been a panic. Um,

Jennifer 7:24
well, the thing is, is that was kind of progressive. So at the very beginning, you know, of diagnosis, it was injections, but she was so little, she was getting small amounts of insulin. And a year after we got her on the pump, and started doing the pump, but as she, you know, got older, needed more insulin, it started to have reactions of pump sites being read red, inflamed, painful, itchy. And so, of course, we went to the mode of it must be, you know, the adhesive. So then we are trying barrier wipes and different methods, you know, MSB adhesives, then, you know, she wasn't having issues with other things like the Dexcom, she was having issues with the adhesives and stuff like that. So then we thought, well, it must be the catheter, you know, a plastic, so we went to metal, or vice versa. And either way it it still was having reactions. And we thought, Well, maybe it's the how Gauahar wipes because, you know, it's kind of, you know, abrasive. So, we were cleaning sites with, you know, water and soap before putting a site on just to see with that, and that wasn't working. And I remember talking to a nurse on the phone and asking her, you know, could it be the insulin? And she's like, That can't be. And I said, Okay, well, all of these reactions that she's having, is this normal. And she's like, No, how long? Oh, okay, what else?

Scott Benner 9:42
Thanks for your input. Jen. How long do you think from when it began the just the reading and the soreness to when you said to a nurse, hey, could this be the insulin How long did it take you to get from point A to point B on that?

Jennifer 9:55
It was probably a year and a half. Try different things, and it it, you know, not changing. It wasn't changing. And so I remember them deciding to do a different insulin, just to see if it, you know, would be. So different reactions

Scott Benner 10:20
and we're not throwing anyone under the bus here because Morgan's not just allergic to one insulin and not the others or something like that. So, so what what insulin did you start with? What was the first experience?

Jennifer 10:30
The first, the first insulin that she had was Novolog.

Scott Benner 10:34
Okay, then what you go to?

Jennifer 10:35
Yeah, you know, regular. And then we tried? Sorry. It's like, are these insulin?

Scott Benner 10:50
Sorry? Do you try Humalog? Okay, yes. And then when that didn't work? Did you keep switching? Or did you say to somebody I'm telling you to think and so on.

Jennifer 10:59
So we switched again. And we went to we saw an insulin called the P drug pager hadn't heard it before.

Scott Benner 11:07
It's the one my daughter used this, by the way for years. Yeah, my daughter's been using the future forever. And then then when that didn't work for you, just so being really serious once you get into this situation, and I sort of want to hear about this, from everybody's perspective, you're basically being told the oxygen your breathing is burning your lungs, but you can't stop breathing? I mean, is that incredibly difficult to make peace with?

Jennifer 11:36
It? It was it was difficult. Because, you know, I was, I was willing to try anything, anything, you know. So, pump sites were horrible after three days. So then they switched it every two days. Every one day of you know, having to change her sights and hopes that, you know, she wouldn't have a reaction. Yeah. And after 24 hours, you know, the doctor that she was seeing at the time, he's like, I've never seen a pump site like that before.

Scott Benner 12:10
Okay. And that was like, Well, great. Yeah. It's almost like taking your car to the mechanic. And you know, they don't know how to fix it. And they just start saying, like, well, we're just gonna swap this part and see what happens. And, and so do you get hopeless? Oh, yes. Yeah. Yes. Morgan, can I ask you like, did you ever skip insulin or anything like that to avoid the pain?

Morgan 12:35
Um, I would try to a lot. Yeah.

Scott Benner 12:38
Is this I mean, did you did you go to therapy for this Morgan?

Morgan 12:43
Um, not to have recently have we tried it?

Scott Benner 12:49
Yeah, I mean, it just, I'm, I don't know like, I know you're on the spot here. But can you put it into words what it's like to use something when you know it's going to hurt.

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Can you put it into words what it's like to use something when you know it's going to hurt?

Morgan 15:42
Very difficult, and a lot of trying to convince yourself that it's worth it.

Scott Benner 15:50
What are you convincing? I don't mean to be morbid, but are you convincing yourself that being alive is worth it.

Morgan 15:56
Um, at times, the pain would get very extreme to where I didn't want anything to be touching me. Not even like air going on me. So it was a lot to just be there. But then also, hey, you got to do more because your blood sugar's high or a need to do more, because you want to eat, right?

Scott Benner 16:21
And I'm imagining, tell me if I'm wrong. But when they started saying like, move your pump every 24 hours, all it did was make more sore spots on you, right?

Morgan 16:29
Yeah. Okay. The sore spots also lasted for like days. So you'd move it? And then it would be trying to find another spot in between parts that already hurt, because they hadn't held yet.

Scott Benner 16:43
Did you have the extra burden? Were you trying to hide them from other people? So they couldn't see them as well?

Morgan 16:48
Um, occasionally, yeah, I would, because I didn't want my friends and other people to see how red and ugly it would look. So I tried to focus the shots in the sights, where people would have it covered by their clothing.

Scott Benner 17:14
Yeah. Did you ever try change? I mean, did you ever go to the extreme of changing your diet significantly?

Morgan 17:20
Um, I try to eat a lot the US or avoid snacks? What?

Scott Benner 17:25
Were you able to avoid this turning into an eating disorder?

Morgan 17:30
Um, yeah, for the most part.

Scott Benner 17:33
Good. Okay, that's very cool. It's just, it's already difficult, as you know, you know, I mean, this. It's funny, funny, in an awkward and odd way. But this description of like, every injection is a hill to climb. And you know, something to get over. It's it really is how diabetes is anyway, even without the you don't I mean, even without the pain and the the allergic reaction. So you're adding, I mean, you're just multiplying it, right? It's just, yeah, that's insane. And you were so young for a while. I imagine it got more difficult as you got older and became kind of more self aware. Yeah. 100%. Okay. So when you were younger, you were just doing what you were told. And it hurts. Yeah. Did you ever? Like Jennifer, did she ever tell you? No, she ever just say I'm not doing this?

Jennifer 18:30
Actually, Morgan has been an amazing, you know, diabetic, you know, if you could be one like she, she never complained. Do you know? I mean? Yes, she would tell me, Mom, it hurts. It hurts. I don't want anything to touch it. But yet, she never told me. I don't want to do this anymore. Like, you know, I don't want to have you give me an injection. She was just, you know, okay, this is what we have to do. And I, I've always been one to try and be positive that, you know, I am all for, we're gonna find an answer. We're gonna, you know, we're gonna do this. And then it was also, you know, she, she would ask, you know, why me? And it would be, we're going to have an answer. And we're going to be able to help somebody else. This is, you know, we're going to do this. And so I hope that I was one that never gave up hope for her. You know, if she didn't have it, that I could give it to her.

Scott Benner 19:44
Okay, that's amazing. Can I ask you to be a little more honest? Did you believe it when you were saying it?

Jennifer 19:51
Um, at times, it was difficult. I can't tell you how many times I was crying for her. Um, which, if anybody knows me, I cry over everything I can cry when I'm happy, mad, sad, you know, but it's just one of those things of seeing your child go through something which, you know, you see that with diabetics, you know, I wish I could take this away from my child, but then to see them in constant pain and have no answer. It's, it's very, it's very hard to be positive. But, you know, I've always been determined that I'm going to help her I'm going to find something we're going to do this. So,

Scott Benner 20:43
Morgan, were you aware that this is how your mom felt? Yeah. Did that make you feel bad? Like guilt?

Morgan 20:50
Um, yeah, occasionally. always felt sad or upset with myself, even though I knew I wasn't the one causing her to be hurt.

Scott Benner 21:05
Are you allergic to anything else? Morgan? No, not that we know of even like, you don't get bad hay fever, anything like that at all? I don't think so. No kidding. Wow. Morgan, that's just some I was gonna curse. I'm sorry. We all don't know each other that well, but just some really bad luck. How terrible. Can I ask Dwayne, you have an interesting perspective, because you're not Morgan's natural father, but what's it like to sit back and watch this happen?

Dwayne 21:39
Well, I did work as a pharmacy technician for a long time. So the concept of somebody becoming allergic to something wasn't really new to me. Because everyone's body reacts differently. You know, this person is allergic to penicillin. These people are not, you know, so, you know, I just went into automatic mode and like, Okay, let's try different syringes, different manufacturers, you know, just went through the whole process of what I was trained on when I was a tech, and it's been rough. You know, I, last summer, I went to wake her up, and she's lying on her floor. And you know, that's the first time and she was unresponsive to and so that was really nerve racking. And it's like, I want to help her to make her feel better. And, you know, I keep coming up with ideas. Well, to me, let's try some lidocaine on that spot. We'll see if that helps with with this. You know, try some ibuprofen. Right, so Benadryl, you know, just went through all those steps and just trying to find a way to help ease her discomfort with all this was just, you know, disheartening, because? Nothing. Until recently, have we been able to find that solution?

Scott Benner 23:02
Yeah. Morgan, what were you on? Why are we on the floor? Were you in DK? Um, yeah. Were you not taking your insulin?

Morgan 23:10
Um, no, we had been my blood sugar just got to the point of it not absorbing any of the insulin and getting so high.

Scott Benner 23:19
Oh, from the inflammation at the site, you weren't getting good. Oh, I see. Oh, that's scary.

Dwayne 23:25
That's why she had to move the pump site every day, is because you get that tissue swelling, and just heard your absorption at that spot. So you have to move it to another spot, but then that that slow moving insulin finally hits her system. And so she would go into Ultra lows sometimes after being high, because she gets like a Bolus along with her. The other shot at new site.

Scott Benner 23:50
It's just like a cruel joke. We're gonna I wanted to ask, Oh, God, I had a question for you. I think it might have just fell out of my head. Because that was upsetting. And I'm still recovering from Jen, you almost made me cry about five minutes ago. So I had your voice broke once I'm like, I'm gonna cry. So Oh, my question for you, Morgan is is kind of simple. Maybe you will know the answer. And maybe you won't. But did you? While everybody's working so hard to try to figure this out for you? At what point? I'm guessing you gave up at what point did you just go along passively because they were trying like When did you stop believing anything was ever going to help?

Morgan 24:32
I'm probably after our first time with testing out to see the different area actions to all the different insulins that we had. We had gone to this one allergists and I remember just going to get it tested. And just giving up because the reactions didn't show from how a little mountain diluted They were. And I just remember, quitting I was done

Scott Benner 25:03
just didn't matter. Like, no matter what insulin it was, or how much or how diluted you were having the same reaction at every spot. Yeah. Wow, I'm so sorry. How long ago was that?

Morgan 25:15
Um, two years ago or

Scott Benner 25:19
eight years after this started? Yeah. Well, Morgan, you've got a hell of a college essay. And you, I'll tell you, you're gonna, you're gonna get accepted anywhere you are anywhere you want to go. That's really, it's crazy. So. Okay, so you're seeing a doctor in Dallas, and she hears Sasha on my podcast, and then contacts me and asks me if I can set her up with Sasha. And that all happens. You get a phone call, like an excited phone call from a doctor

Morgan 25:56
or no, like, we go into my appointment, and she's ecstatic. And I have no reason or clue why.

Scott Benner 26:06
Okay, yeah. And she's just like, you're probably like, Listen, lady, this is I hate this place. So why are you? She just told you what, what did she tell you?

Morgan 26:17
Um, that she had listened to your podcast, and gotten in contact with you to get in contact with Sasha. And learned about all this information about what she was going through what they've done and all that stuff.

Scott Benner 26:34
Okay, and were you like,

Morgan 26:38
I was very shocked. Didn't know what to say? Or how to react mainly. Right? I was just surprised to hear that there was someone else having reactions like I was.

Scott Benner 26:50
Yeah. And then did you? Did that make you feel hopeful? Or were you still like, this probably isn't going to work for me.

Morgan 26:57
I was a bit hopeful. Yeah.

Scott Benner 27:00
So So Sasha was doing? Gosh, she was doing that whole, like, getting that insulin from she had like, like a device she had to get from overseas. And it was like a big insurance problem, like this whole thing. Is that what you thought you were going to be doing at that point?

Morgan 27:17
Um, I didn't know what we're going to do. But I knew that there was other opportunities now.

Scott Benner 27:24
Yeah. Okay. I gotcha. So in the end, you're using so I guess, your your Basal insulin, or use your your you still you're still using a Basal insulin? Yes. And, and are you having an allergic reaction to

Morgan 27:40
it? Um, to this one. Now, right now, I'm using what's called receiver. And it's seeming to work pretty well. And I don't seem to react to it.

Scott Benner 27:50
Excellent. And for your meals, what are you doing? I use a Frezza for instance, you are using an inhaled insulin. Okay. Do you like it?

Morgan 28:01
Um, yeah, I mean, it's not painful. Super easy to do. So

Scott Benner 28:06
as soon as I asked if you liked it, Morgan, I was like, that's the worst question I've ever asked on this podcast ever. Obviously, you like it, but I meant, like, was, I guess what I mean, was, was it a big shift from injecting for meals? Like what was the learning curve? Like,

Morgan 28:22
I'm more so learning of when I need to take it, because it reacts a whole lot quicker. But it also gets out of your system a whole lot quicker. Okay. Are you just adjusting to that is?

Scott Benner 28:39
Yeah, well, what about the process of like, how do you I've never had anybody really explained it to me before. I don't think like he just kind of isn't like an inhaler. Like you see people use

Morgan 28:50
Yeah, it's practically just a little inhaler. It comes in set capsules of units. So there's 12 unit, eight unit and four unit. And based on how much you're eating, you'll put in one of the units and then you'll just inhale like you would for asthma,

Scott Benner 29:09
right? Are you experiencing much more stability? I mean, I would imagine you are like a you have more stable blood sugars now? Um, yeah.

Morgan 29:18
For my blood sugars which like always around in like three hundreds and up but from since starting this my blood sugar's normally are a lot lower than that. So

Scott Benner 29:32
can you tell me if you you don't have to share if you don't want to, but like, what was your a one see a year ago and what what is it now?

Morgan 29:40
A year ago, it was like 13. And our latest appointment was like 9.1 or something like that. Wow.

Scott Benner 29:50
You're kind of just learning how to have diabetes, aren't you? Yeah. It just It occurred to me like this whole thing has been it It stopped the process that everybody else goes through of, of, you know, getting over the sadness and learning how to use insulin and you know, that kind of stuff like Pre-Bolus in your meals and all the things that you need to learn to have find stability, and Laurie one sees, and you'd never had you were always in a in a firefight, basically, you never got, you never got to the part where you got to sit down and like think about it.

Morgan 30:24
Not really, yeah, that's amazing.

Scott Benner 30:26
Do you feel better that your agency is lower? 100%? Yeah. Jen, do you see a difference in her personality?

Jennifer 30:35
Yes. You know, first of all, with her agencies, she hated hated going to appointments, because every time we'd go, they'd be like, Okay, we got to work on the same one, see, we got to, you know, do better. And it you know, because of that, they would add more insulin, more insulin. And her ratio used to be where she would get one unit for every three carbs. And, of course, excuse me, her insulin, or her agency just wasn't coming down. She she had, I think, the highest that she had, you know, after diagnosis, her agency was 14. And, you know, it just couldn't have hated that all our work that we were doing was not shown on paper. And all they could see was a onesie 14. You're not doing it here. We

Scott Benner 31:44
no one ever said no one ever said, Hey, there's inflammation here. There's reasons why the insulins not working.

Jennifer 31:50
No, no, no, it wasn't until it wasn't until we, you know, found. Dr. Bonnie McCann Crosby is before that. Nobody, you know, I took dozens of pictures, we'd show them, you know, her injection sites pump site, then it'd be like, Oh, that's bad, okay, but they didn't ever say anything like, oh, this could affect your body, you know, you know, absorbing the insulin. And she'd go, like, at least once a year, she'd be in DKA and had to go to the hospital. And it'd be like, You got to work on your emergency, you got to do more insulin. And it wasn't until we were in the hospital for DKA. And Dr. McCann was the attending physician, and she came in. And of course, I'm like, these are the pictures. This is what's going on. This is you know, and she was one that was okay. Okay. And she had left and Morgan's. Like, I like her. And I was like, Okay, we'll go to her. So we switched over to Dr. McCann. And she was the one that actually looked at these sites. She took pictures she, you know, was genuinely interested in helping us find an answer. And so when we having her a Wednesday be at 9.1 we're ecstatic and I do see a difference in her person every

Dwayne 33:33
time we would go to a doctor or she was in the hospital, you know, they have rotations for rotating shifts and everything we just have any doctor that we were in the room when they came in, say, Oh, by the way, can you look at this, you know, maybe you have a wound care specialist allergist come by take a look at this and try to tell us what's going on here.

Scott Benner 33:50
Yeah, just hoping if you sent it to enough people, someone would recognize it. Right?

Dwayne 33:54
Yeah, someone would come in and go right away. Oh, yeah. It's because of this. It's a little

Scott Benner 33:59
demoralizing that it never happened, isn't it? You know, it's just it's crazy. That Well, I mean, it's rare and all but somebody should have been able to make the leap. You know what I mean?

Dwayne 34:13
And the last time that she was in is when we started for SEMA she tried Lantus lever mirror basil guard and then finally the in the hospital they put her on recibo we're like okay, this one works.

Scott Benner 34:27
So that one so why would imagine just getting on on a Basal insulin that wasn't causing you a problem probably started to bring her a onesie down and and create some stability. You were a CGM Morgan. Yeah, I do. Actually, is that like, before? This was that CGM just basically like depression on a screen for you.

Morgan 34:49
Um, yeah, I wouldn't like looking at it at all. constant reminder that my blood sugar was never worked supposed to be

Scott Benner 34:58
told me if Even though I mean, it's obvious to everybody, and I'm assuming to you as well. And you've said already that this is not your fault, right, but it doesn't stop it from feeling like that, does it?

Morgan 35:11
No, not at all. Okay.

Scott Benner 35:16
You actually, so how long have you been using the is it by the way? I'm sorry? Is it a Frezza? Or is that how they say it? Freeze? Okay, how long have you been using our

Morgan 35:26
Frezza? Um, it will be a year in September

Scott Benner 35:29
year in September. So now you can look at your CGM and start making more thoughtful decisions about using insulin. Yeah, yeah. And a nine. Let me ask you a quick. Do you mind if we talk about management for a second? Do you guys should? Yeah, Jen, you don't actually listen to this podcast, right? No, I do. Okay. All right. So let me ask you a couple of questions about your basil. How much do you take a day?

Morgan 35:55
Um, I take 32 units in the morning and then 56 At night

Scott Benner 36:01
of Joseba. Wow. So you are still pretty? Is that a resistance to the insulin? Have they ever checked you for insulin resistance?

Morgan 36:13
I'm not sure. No,

Scott Benner 36:16
they haven't, they haven't. So 30 to 56. Really. So eight onto I'm I'm mapping over here, which is not my strong suit. Sorry.

Dwayne 36:28
So we just went through around of having her text me whenever she did a Frezza how many units and I would put in the text messages and the time and date. And I built a spreadsheet on that and sent it to document cans office, they looked at her Dexcom stuff from their size, so they can see where she was at, at that time and date and make some adjustments based off of that. Yeah.

Scott Benner 36:55
Hey, overnight. Morgan, do you? Do you sit stable somewhere? Does your blood sugar sit stable? Overnight?

Morgan 37:05
Sometimes

Unknown Speaker 37:07
Do you this morning,

Morgan 37:10
this morning.

Scott Benner 37:12
So the way I talked about using insulin here and basil still Basil is that basil is kind of the most important part, it's the foundation and the building block of your of your management, right. And that away from meals, like you know, so away from meal insulin, which would be a present in your example, and away from active food in your stomach. So once your food is empty, your stomach is empty. If your Basal is doing its job, well, you are stable at the number you mean to be at, which means if you want to be at 100, you should be stable at 100. If you want to be at 90, there's an amount of basil that should hold you stable at 9120, etc. And so it's just very interesting to me. I mean, that's I don't think of insulin as a lot of insulin or a little bit of insulin I think of insulin is you use the amount you need. But performer perspective. I'll just do it. My daughter I think weighs like 135 pounds right now. And she's eight, eight teen, and she gets about a unit of basil through a pump an hour. So she's using about 24 units of basil a day. And it's an hour away from, you know, away from meals and active insulin. Her blood sugar sits pretty stable between 90 and 110. But yours isn't doing that. Is that right? No. So I would listen. I'm not a doctor. I'm actually maybe the farthest thing from one. But I would I would wonder if there isn't. If something's not happening, where you're, you're, you're seeing some resistance to the Joseba Yeah, and I don't know, I don't know what they would do about it, obviously. Because I wouldn't know if it's inflammation from you know, from the other stuff that we've been talking about. Or if you actually have I don't know, like, I mean, I know you're definitely type one. I'm not saying that but I wonder if you have insulin resistance on top of it or what's your diet like for the course of the day?

Morgan 39:13
I don't normally eat breakfast right now, um, lunch? Normally it kind of varies not very much than either and then dinner it's kind of a lot more

Scott Benner 39:30
Yeah, but nothing like you're not eating like like I don't know you're not having potatoes with rice and a cheeseburger like like you know like you're not taking in like like a like a ton of carbs a day. No no okay, but super interesting. Wow, okay. He caught me by surprise when you said when you gave me this receiver number it caught me by surprise. It's not that not bad. You understand what I mean? Like it just Yeah, it was more it was just more than I expect you to say. I think maybe Are you embody in conversations about this?

Morgan 40:07
Yeah. We're constantly going back and forth, or emails changing and tweaking intake for it and stuff.

Scott Benner 40:15
So let me ask you a question. If your blood sugar was sitting at like, let's just say 200. Right? And you haven't eaten in a couple of hours, you're just looking at a higher blood sugar. If you take the A Frieza a Frezza. Oh my God, why can I say it? If, if you do that, and say you drive that 200? Down to 100? Right? You correct that number? Yeah. Does it float back up again? Or does it stay down there?

Morgan 40:40
Um, normally floats back up.

Scott Benner 40:42
Yeah, that's basil. That so that's, that's, that's a weakness in the basil. Yeah, that's interesting. I don't know. I'm sorry. I don't obviously know how you're gonna get that accomplished and worked on but that I think that's your goal. I think if you figure that piece out, I think that nine a one C turns into a six a one say? Yeah, you know, oh, are you excited that that might happen?

Morgan 41:06
Um, yeah. We're always excited when it gets down.

Scott Benner 41:11
This is such a, this is a such a, an amazingly uncommonly happy story at the end. I mean, it took forever for you to get to it. But I mean, you really were in a position where you didn't think this was going to work out. And it just did. Do you ever have sadness that it took, like that, that a freeze have existed before this? And you didn't know?

Morgan 41:34
Occasionally? Yeah, it's hard. Not this gets you down thinking how many years you've dealt with this? And it could have been fixed. You're known?

Scott Benner 41:43
No, I hear you.

Dwayne 41:45
is expensive. It's, you know, FDA approved for 18 years of age and higher. So the manufacturer card because the doctor really prescribing this off label doesn't offer doesn't the savings card doesn't work at the pharmacy for her. So, you know, it's one month supply for her. It's a couple of grand Wow, during the ductable season, so as that's not not going to be for everyone.

Scott Benner 42:11
Right? Yeah. Hey, Morgan, hurry up and get to be 18. Yeah, did you ever try contacting the company directly?

Dwayne 42:22
And tell I know Dr. McCann contacted them talk to I think their medical director and stuff and because she was under 18. She wanted to talk with him about any risks associated with it but haven't talked with. We haven't reached out to them and talk to him about getting any assistance yet.

Scott Benner 42:41
Well, Morgan, I would think you would be a perfect candidate to be a sponsor of of that insulin. For sure. Your your your story is a is. I mean, your story is that that insulin was your only saving grace. Yeah, you know, like that one simple thing. You know, that company almost stopped making it a few years ago. Isn't that crazy? Like they had not imagined? Yeah, wow. Oh, I just thought of that. Give me chills. Okay. All right. So, okay, more than other questions. What do you enjoy doing? What do you think about going to college for that kind of stuff.

Morgan 43:17
Um, I like working with kids. That's what I do. Mainly a lot. I work at a daycare, actually, and work with preschoolers at school for one of my classes. I'm really good at math. And I'm dance to that and probably will go into mathematics for college.

Scott Benner 43:36
Do you think you'll do education? Or do you think you'll go? Possibly? You don't want to be a math teacher? Is that what you're thinking?

Morgan 43:45
It depends on the grade.

Scott Benner 43:49
What how, what age of child do you imagine would be the best to teach math though?

Morgan 43:56
Um, probably third grade. Yeah, cuz that's when they're learning multiplication. And it's still like it's honest.

Scott Benner 44:04
Yeah, it's a good age for kids. So they're kind of I don't know like you don't realize it till you see it but they're like they're they have enough like common sense that not be complete lunatics and they haven't been hit with all those hormones yet, so they're kind of nice. Yeah, right. Jen. Remember when the kids were nice? Well, this is amazing. Is there anything I'm not asking you that I should be like if I miss something about this story?

Morgan 44:31
Oh, not put a No I did. Okay.

Scott Benner 44:35
Jen, how about you? Can I Can I ask a year after this happened now? Is there been a an increase in your in your mental health like has this been a relief? That's hard to put into words? Yeah. Yeah,

Morgan 44:51
definitely. Definitely have a whole lot more motivation to do things. Before you. It was hard. Hard to do things because they felt like there wasn't a point because at some point, you know that your body is just gonna give out. But now with having more energy and my body actually accepting the insulin, I feel like I'm able to do a whole lot more.

Scott Benner 45:16
Yeah, Jim was there ever in your head that this high a one C was going to, like, hurt her and other ways, at some point. Excuse me.

Jennifer 45:28
So, you know, it just frustrating that you kept seeing it going up. And but, you know, she'd go into DKA. And, and every time that she was in DKA, you know, she was responsive, she wasn't feeling good. She went in, you know, but last year was, was the scariest. And, you know, seeing your child lay on the floor unresponsive and having the paramedics come in to get her and having to do a CT scan to make sure that her brain is okay. And going into the hospital room. And she is completely out of it does not know where she's at, and is trying to take off her, you know, her IV 's and stuff because she's wanting to get out of bed. And it just is, you know, a moment that I will never forget. And hopefully we'll never have to go through again,

Scott Benner 46:41
doesn't sound like you're going to have to, and it's good.

Dwayne 46:45
And in the last year, you know, when she started at Frezza. She went into clinic, we have the allergies there in Dr. McCain's office as well. They get a chest X ray just so they have a baseline in case of presence starts having any impact in their lungs. We go to Texas Children's Hospital, which is great as five minutes up the road. She's seen a cardiologist and kidney doctor just get a baseline on some of her systems to make sure that you know, diabetes doesn't start to impact those.

Scott Benner 47:22
Yeah, it's really interesting actually turn the way you answered my question. Because I and I'm not trust me, I'm not being critical. I was trying to lead you into thinking about long term complications about diabetes, but you're so mired down in this fight, I think that you can, you don't have the bandwidth to look deeper than what's happening right in this moment. And and that became really evident when you were answering the question, I thought, wow, like, there's this poor family, their situation is so immediate and constant, you guys, you don't have the luxury of thinking a month away. And, and now you do all of a sudden, is that, that that that must be a pretty nice change, I would imagine

Jennifer 48:06
that it is a nice change. And also like, so I'm in the middle of getting my master's program, or getting my master's in social work. And, you know, just this last semester, I had some amazing things, you know, even happened just recently because I was looking for research, and came across an article about a boy who was allergic to insulin. And I reached out to the author and asked him to, you know, forward the email on to the mom in hopes that she would contact me. And she did. And they they have a Facebook group is called insulin allergy and hypersensitivity awareness. And in there, there is a group of seven moms, all with kids who have allergic reactions to insulin. And it was just another thing of Oh, my goodness, okay. She's not alone. She's not alone.

Scott Benner 49:25
Right? Whether it's, I'm sorry, whether it's seven people or 7000 people, it's such a big deal to know you're not by yourself.

Jennifer 49:33
Right? Yeah. And that's what I kept telling them. I'm like, Oh my gosh, we're not alone. We're not alone. You know, you wouldn't wish it on anybody. But I am so thankful that we have now come into a community that completely understand. And so you know, that is one of my main goals with getting my master's degree is I just want to be able to help Morgan you know, the best way I can. But then to be able to help others who, you know, come into this life of feeling alone.

Dwayne 50:16
Yeah, I The reactions are the same across the board. I mean, Sasha, who was on your other podcast, she said that I believe that the insulin was eating away at the tissue of her skin Morgan gets bruised and redness and pain. Another one Jen was telling me about from this new Facebook group that she found was as like a BS thing where it gets raised and read and painful. So these reactions are carbon copy, right? You need to these fake these patients, these kids yeah,

Scott Benner 50:48
it's insane. Like Jen have those other people tried a Frezza.

Jennifer 50:54
So other ones they have not. I know that one of the patients. She was, you know, whenever she tried a Piedra, she would stop breathing. And so they have not tried a Frezza. You know, so and I think that they're all younger patients. They are now all younger than more than the oldest one turns 18 in March. So Morgan is now the oldest of this group. And so, you know, with FDA, you know, not having a friend approved for under 18. I don't think any of them have tried. I

Scott Benner 51:37
say well, okay. Hey, Morgan, are you do you know, Sasha? zyk? You guys hook up online and meet?

Morgan 51:43
Um, no, not personally.

Scott Benner 51:47
So, listen, as we wrap up here, I just want to tell you more than I know, my name is not great, Scott. It's kind of like it's not a great name. I've lived with it my whole life. But I do feel like if you have a baby ever one day, like I should get some fairly strong consideration for baby names. Do not think big. But I wanted to, I wanted to seriously tell you just kind of like to put some perspective in this for you. You're almost 18. And eight years ago, when you were 10. I started this podcast. But back in 2007, I started writing a blog a year after my daughter was diagnosed. I wrote that blog for years, I eventually started a podcast. And my idea was much like what your mom is talking about with with what she's working on, as I just really wanted to help people. And at some point, it became very obvious that I really understood how to use insulin, and that my daughter's outcomes were very repeatable, and that I could explain it to other people, and then they could have those outcomes. And then the podcast sort of just grew from there. Like, I'm just sitting in an extra room in my house right now. And, and I made a thing. I don't know, in 2007, that turned into a different thing in 2015, that in 2021, led you to find somebody who helped you with your thing, like it's, it's kind of magical and almost hard to believe, you know what I mean? Like, it's, it's crazy. What year were you diagnosed?

Morgan 53:20
Um, 2012 2012

Scott Benner 53:23
Wow. So six years after my daughter was diagnosed, you got diabetes. And I started a blog because I was trying to raise money for the JDRF. And I could I was having no trouble raise. I was having no luck raising money. So I started writing to people, and in like, this kind of email thing. And then I realized that was bothering them. And I found Morgan, this is gonna sound particularly odd to you because you're young. But I found a program that let me put my words on the internet and make a make a blog, which was not a thing back in 2007. Really? And all these years later, you don't have sores on your body anymore. is very cool. I don't know. I'm very excited. I'm I'm proud of you. And if I'm being honest, Morgan, I'm a tiny bit proud of myself right now. And I'm looking for just even if you buy a dog, and you name it, Scott, I think that would be appropriate.

Morgan 54:17
Okay, totally. I got you. Thank you audit. My pets. Yeah, you

Scott Benner 54:21
know what I'm saying? Like nothing big and you take a picture of it, you send it to me go look at Scott. Even if it's ugly, it's fine with me. I don't care. Really. You guys are terrific. I really can't thank you enough for taking the time to do this. Especially coming up on a holiday weekend. But your story is amazing. I do want to just make sure one more time. Like I didn't miss anything, right? No, you feel good about this. Yeah, I feel really great about I'm super excited for you, Morgan. I can't. I mean, as you're talking, as all of you are talking, I am sitting here thinking like this poor girl's life must have been drudgery. Like just wake up have every morning and just drag your ass through another bad day. And now I just, I just feel like you, the last year of your life has probably felt like, like heavenly, you know, you have a lot of perspective for a person your age, it's gonna serve you well as you as you become an adult. Do you ever feel like that around the other kids? Do you ever look at them and think I know more about the world than they do?

Morgan 55:25
Um, occasionally, especially my peers, you can just tell if some of them

Scott Benner 55:30
haven't been through anything, right? Yeah. Do you have that feeling? Like there's nothing you can't do?

Morgan 55:37
I'm sometimes

Scott Benner 55:40
may I say something, we don't know each other. But you should feel like that. You've been through a lot more than most people go through in their entire life. And, and you're on the other side of it now. So you have this, you have this perspective, like you know about before, and you know about now and now's better. So, you know, you don't need my advice, but anything's possible. You can just dream it and do it. And it'll happen. You know what I mean? Yeah, that's so cool. All right. Well, thank you guys so much, Jen. I really appreciate you doing this. You sounded so nervous in the beginning. Are you okay? Now, Jim?

Jennifer 56:16
You know, I was nervous. And, you know, it's the whole thing of Oh, my goodness, we're actually getting our story out there. You know, we haven't been able to have, you know, major platform to do that. It's always just been in the moment, whoever doctor is in front of us. Look at this, please help us. You know, so it. Yeah, nervous, but I'm so grateful that we were able to come

Scott Benner 56:46
on. No, I appreciate it very much. I mean, in my mind, Sasha story, reach Morgan Morgan story could reach somebody else. And at the very least, if it can't find another person who's going through what Morgan was going through, I think it should serve very well to let let the other people listening, reset their level of gratitude. You know what I mean? Because this is, because Morgan, you got way more than your fair share of both. So, you know, everybody else, I think, will listen to your story and feel pretty lucky today. And I'm just super happy for your kid. Like, I am so excited that this worked out for you. Congratulations. Seriously, go learn some math and maths. Good. Morgan. That's a good thing. Yeah.

Morgan 57:30
I'm excited for you taking calculus. So, Dwayne, you

Scott Benner 57:34
sound like a good dude. Man. That's a that's a lot of kids over there.

Dwayne 57:39
Yeah. Scott, if you're if you're curious, we did look up a Frezza on YouTube. And the company does have video on there and how it's used and everything else and what the equivalents are between the inhaled and versus the liquid insulin. So, you know, check that out.

Scott Benner 57:56
Yeah, let other people find it and take a look. That's amazing. All right. All right, everybody, thank you so much.

Well, I'd like to thank Morgan and her mom and her dad for coming on the show today and sharing her story. I'd also like to thank our Frezza for existing and help him Morgan out. You guys want to help her, contact me, and I'll put you in touch with her. And if you guys want to buy some ads, I've got a podcast all about diabetes, you should give me a call. Speaking of ads, thanks so much to touched by type one for sponsoring this episode of The Juicebox Podcast touch by type one.org. And of course the Contour Next One blood glucose meter. Go check it out right now at contour next one.com forward slash juicebox links to the sponsors. And all the sponsors are in the show notes of your podcast player, and at juicebox podcast.com. If you're looking for community around your diabetes, look no farther than the Juicebox Podcast type one diabetes Facebook group. It has people with all kinds of the diabetes in there. Don't worry, not just type one, but lotta type two gestational 25,000 members. All in they're talking about something that you'd be interested in getting involved in, checking on or maybe just lurking around. I mean, just be like, see what people are saying about how they adjust their Basal insulin or Bolus for pizza, that kind of stuff. Juicebox Podcast, type one diabetes on Facebook. It's a terrific group. It's a private group. So you have to answer a couple of questions to get in. But after you do that, I think you're gonna like it there. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.