#1296 Fark Fark

Toyya is the mother of a 15-year-old daughter with type one diabetes.

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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 another episode of The juicebox podcast.

Let's see what I've got for you today. Ooh Toya is the mother of a 15 year old girl with type one diabetes. She was diagnosed at 13. She actually has some elevated TSH levels. So we'll be talking about that looks like her daughter has a habit of not replacing her pump when it comes off. And we're going to talk a lot about teenagers and how to get them to do the things that you know they need to do. I wonder if we'll come up with anything, 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. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juicebox at checkout. That's juicebox at checkout to save 40% at cozy earth.com. When you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. AG, one.com/juicebox, I know that Facebook has a bad reputation, but please give the private Facebook group for the juicebox podcast, a healthy once over juicebox podcast, type one diabetes. This show is sponsored today by the glucagon that my daughter carries, gvoke hypopen. Find out more at gvoke glucagon.com, forward slash juicebox. This episode of The juicebox podcast is sponsored by us. Med, usmed.com/juice, box, or call 888-721-1514, get your supplies the same way we do from us. Med, this episode of The juicebox podcast is sponsored by the only implantable sensor rated for long term wear up to six months the Eversense CGM. Eversense cgm.com/juicebox,

Toyya 2:12
hello. This is Toya. I am the parent of a type one diabetic 15 year old now, and here to share my story. Toya,

Unknown Speaker 2:21
your daughter, right? Yes,

Scott Benner 2:24
she was. How old was? She was diagnosed.

Speaker 1 2:26
She was 13 years old, okay, but she's 15. Now she's 15. It's just two years right at March, oh,

Scott Benner 2:36
no kidding, so up on the anniversary, yes, March 8. Well, congratulations. We're still going you're doing it, but we'll find out how you're doing it while we're talking. So okay, yeah, let me ask first big surprise, any other type one in the family, other autoimmune anything like that? Well, I

Toyya 2:54
have a first cousin who has type one diabetes, and my cousin, my husband, has, like, a second cousin. So not anybody real close. So it was, it was a surprise. Yes, it's

Scott Benner 3:05
interesting to me how the way people measure that, like, not real close. Like, I think a first cousin's pretty close to me. Like, because that means, like, a sister of a parent or a brother of a parent has a child with type one, yes, yeah, I think that's close. I got you Okay, so there's one on your side, one on your husband's side, your husband's and then what about other stuff, like celiac or hypothyroidism, things like that. No other,

Unknown Speaker 3:35
what

Toyya 3:36
I would call obvious autoimmune No, we have like osteoarthritis. Interestingly, my second child was diagnosed with a brain tumor after a year after the first one was diagnosed with type one. And so we've had sort of a whirlwind of, I guess, kind of challenging things in our life. I have, we have, we do have a lot of anxiety and OCD and ADHD in the family, and there is a bipolar so there's, I've heard that you there's some links there from your previous podcast. Yeah,

Scott Benner 4:05
I don't know about, I mean, listen, I don't know about links. But after enough people say it, you think, what can't be a coincidence, right? Yes, tell me, OCD. Like diagnosed OCD, or just likes the room clean. No,

Toyya 4:18
very much. Diagnosed. My brother has pretty severe CD and it's been followed by psychiatrist treated for many years. It was pretty devastating. I mean, he's not married, he's not able to hold a normal job, and that's my I believe my mother and my uncle also have it, and it's but not nearly as severe. Intrusive diagnosis, like,

Scott Benner 4:43
how does it present? Like, intrusive thoughts keeps them from doing things because they're repeating stuff all the time. Yeah, it

Toyya 4:50
started when he was young. He can say, remember, like trying to rearrange everything and check the light switch. He'd be late driving. He'd drive himself to high school when he could drive and go back. Can check the lights in the oven and things that he'd make himself late to school. I would always want to make sure my mom, he'd say, Mom, Mom, don't leave the house. I want you to leave. I want to leave after you. Because he wanted to make sure he wasn't the last one to have to check things. The main thing is very intrusive thoughts. You know, just having to, if you read something, for example, and you read a negative word, like lose or hurt, then you have to continue reading in order, in order to get the same number of positive words to balance that out. So it's very debilitating. It makes it hard to study or go to school or do anything really.

Scott Benner 5:31
Wow, that's something.

Speaker 1 5:32
How old is he? He is? Let's see, 57

Unknown Speaker 5:41
I believe? Yeah,

Scott Benner 5:41
no kidding. Would you say that he's made the I hate to say it like this, but would you say he's made the best of it, or has it been Yes,

Toyya 5:49
he actually has. He's got, he's a super sweet guy, and he's got a psychiatrist that got him into this program that where they actually help people who have disabilities work. They give them so you get Social Security, and they do so many hours a week, so he can still get his social security, but also work and kind of get out and have a job and just a little bit of Ubering too. So he can do things like that, but not under pressure, right?

Scott Benner 6:10
Not under pressure, okay, yeah. I guess if you were in an Uber driving around the same block over and over again, you'd be like, hey, yeah, what are we doing?

Toyya 6:19
Exactly?

Scott Benner 6:21
I'm waiting for a, I'm waiting for a pink shirt to counterbalance the blue shirt I just saw, or something like that. You that would like, I can't even imagine. I'm not even I'm not making fun of I'm saying, like, what if, like, geez, like, that's really got far reaching tentacles that I bet you a person who doesn't know about it wouldn't understand.

Toyya 6:37
Yeah, during covid, it was especially bad because he was worried about the germs, and it got worse during covid.

Scott Benner 6:43
No kidding, that got worse for me too. I know a lady who used to wash her groceries so, and I bet you, she's very embarrassed now she she thought she was saving her life back then. Anyway. Okay, so you've got that stuff in the family. How about you and your husband specifically,

Toyya 7:01
the only thing I was worried that I had children's after covid. I heard of this. A lot of autoimmune things popping up after covid, and I started having really dry eyes, dry mouth, and went to a rheumatologist. I even had a lip biopsy done to confirm, just to be sure it wasn't that and, you know, had a little problems of, you know, like higher glomerular and lower glomerular filtration rate, like kidney filtration rate. So I was kind of worried there could be something autoimmune going on there. But she assured me there wasn't. And he my husband, doesn't have anything. Either it's autoimmune. So no, okay,

Scott Benner 7:33
and you have two kids, or you have more than that, the three kids, three. So brain two. I have to ask about We're never getting into the diabetes. But I have to ask about the brain tumor. Yes, what was that? Like?

Toyya 7:44
It was horrible. It was like, I think diabetes. I thought, Gosh, this is really a bad, bad thing. I've been built in life, but the brain tumor was it just didn't even compare. It was awful. You just gave it. But she was in surgery for five hours having this tumor removed, and we didn't know what kind of tumor it was going to be and whether it was even, he was even going to be able to fully remove it or not. Yeah, so it's just kind of hanging in there, and lots of just, you know, relying on friends and prayers and everything else. And she they were able to fully remove it. She has had to repeat MRIs to check, and there's no recurrent reoccurrence. They said it was benign, and they said, Honestly, the neurosurgeon said, this is kind of case closed next case. You know, I don't think it's going to come back or anything, but it's affected some of the schoolwork a little bit, made things a little bit more difficult. In some areas due to the surgery, there was a small stroke where they went in to get the tumor because they have to go through healthy brain to remove it.

Speaker 1 8:42
Yeah, my gosh, how old when that happened? She

Toyya 8:48
is 12, she Yeah, just, it was just this past summer. Not been a year yet.

Unknown Speaker 8:52
My gosh, you okay, yeah,

Toyya 8:55
yeah, doing okay. I mean, when they got that out, I was, I was much better, because I just, I think I forgot, did not mention, but I'm a pediatrician, so I have a fair amount of, you know, medical knowledge kind of going into it. And probably having a little bit too much knowledge makes you a little bit more kind of worry. You worry more. You worry about the worst ones. But thankfully, one of my best friends was the neuro oncologist that dealt with us, and we knew, just after a period of headaches and kind of progressing and some weird visual changes, we had an eye exam. We took her in to get an eye exam. She has ADHD, the person who was doing her ADHD reevaluation. She was complaining of, you know, I get headaches, stomach aches, nausea, a lot. And she said, Well, you might just get her eyes checked to be sure she isn't straining her vision. So I just went in few weeks later to get my contact lenses, and I'm like, Oh, by the way, my daughter needs to get her eyes checked. So we did that, and the eye optometrist just kind of hung on to her, and she said, you know, you need to go to see a specialist right away. Her eyes, both of the optic nerves are swollen in the back, and her brain. Brain was just under a tremendous amount of pressure. And they said when they got in there, the brain was actually smooth, because there was so much pressure there. I mean, they let the pressure off the curbs, like the little gyro, the brain actually came right back, right back, and the curves reformed, and it was significant amount of pressure.

Scott Benner 10:18
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Toyya 13:03
yeah, yeah. Basically, yes, it was just causing a lot of pressure. And I mean, that she would just go, she was kind of a, you know, because the first child had type one diabetes, we often thought, well, she's kind of attention seeking because it was hard. She she's always kind of been a little bit in the shadow of her sister. She's the middle child, and her sister was kind of high performing and doing acting and singing and a lot of stuff that got a lot of attention. So middle children often seek attention. So we kind of thought that might be some of it, you know. And even my partner in pediatrics said, This sounds like a migraine headache, and we treated her for migraines, but they weren't getting better.

Scott Benner 13:37
My gosh, well, I'm glad you caught it. That's really great, yeah, honestly, oh my Geez. That's so scary. I mean, how much longer you think she would have had until it was irreversible?

Toyya 13:49
Well, they said that what would happen is, with this type of tumor, she would have started having seizures. She would she would be caught it before the seizures occurred. She never had any seizures. But they said that was how it would have presented. I

Scott Benner 14:00
say, oh my gosh, that's scary. So your type one? Your daughter's had type one for two years. She doesn't have anything else going on. Well,

Toyya 14:08
she she went to an endocrinologist twice in the past for different things, and we had a couple of a couple of issues, mostly what they call, like just short stature and and the other one was she'd had a lot of problems with her triglycerides and cholesterol in the past, so we went to see endocrine twice before she was diagnosed for different reasons, and I'd even suggested, could this be diabetes when she went in for her high triglycerides, because it didn't make a lot of sense to me. And she's always a real tiny, skinny child, and we don't have a family history of high triglycerides, to my knowledge, so it shocked me when,

Scott Benner 14:42
what point in her development did the high triglycerides happen? How old was she then,

Toyya 14:47
well, the first time. Now, at Well Child checkups, they recommend that nine year olds get checked, checked for cholesterol and triglycerides, just routinely, because that's the age where if problems are going to occur, they start showing. Up. So she was just nine years old. Little, tiny, skinny thing went in and got her cholesterol and triglycerides. And the cholesterol was 184 and her triglycerides were 148 so for her age, that was, that was, that was high. And, you know, I was concerned. And then we repeated them, and they, they went up quite a winter. Triglycerides went up to 248

Speaker 1 15:19
Did they do anything for that? No, so

Toyya 15:24
I consulted with I wanted to see a specialist to just be sure, and I would see a lipidologist. They're in the endocrine department, and they specialize in lipids. He basically just said, Will her cholesterol? It's high, but the LDL, the bad type, is not over 115 so we don't need to treat it right now. We're just going to recommend diet and exercise and kind of heart healthy diet, and that's basically it. But the interesting thing is, when you she went in at nine years old to see this lipidologist, they also checked a thyroid on her, and her TSH came back to seven point 13, which I also thought was unusual,

Scott Benner 16:02
is it still high? It's bounces around,

Toyya 16:05
but and then they did a thyroid, thyroid globulin antibodies, which were also high at that time, there were two, and then it's supposed to be less than one. I was just suspicious. I said, Could this be any like diabetes or something, because triglycerides, I think, of fats and sugars? And he said, No, no, no, it's not. Yeah, we checked the hemoglobin, A, 1c, it was normal

Unknown Speaker 16:24
and just

Scott Benner 16:26
but right now, what? What's her TSH, present day. Do you know you

Toyya 16:31
we check it quite often, because now she's sort of paranoid about it. I mean, she said, Mom, I think I have a goiter. She's always worried about it. The most recent one we checked, they're still, they're still over the two and two or whatever. I know you say two is what you kind of, does

Scott Benner 16:46
she have symptoms? Is my question. I

Toyya 16:48
guess not that I really know of. I mean, last time we checked it, we checked it. You just when she's 15, recently, we checked it and, um, let's see it was in September, and it was 3.9

Scott Benner 16:59
has she grown? You said she had small stature. She's

Toyya 17:02
not she's not grown anymore. Really, in the last couple of years, she's done growing. Can

Scott Benner 17:07
I tell you that at one point, Arden was the shortest, tiniest kid in her school, and helena's always been that way. Then she was diagnosed with hypothyroidism, and she's five, seven now,

Toyya 17:18
wow. Okay, well, Helena is 410, and she's not grown anymore. She's not she's not going to grow. I

Scott Benner 17:24
gotta tell you, I don't know why a doctor didn't, didn't and doesn't see a three, a, 1c, and a lack or a three TSH, and a lack of growth is needing the thyroid stimulating hormone. Well,

Toyya 17:35
listen to this. When she was 18 months old, I was looking at her record. She went in, but we brought her in because she wasn't growing. I was worried about short stature. They did chromosomes. They did all this. They looked at her growth hormone, growth hormone stimulation test, but I see in the notes, it says her thyroid function test showed a normal T for but an elevated TSH of 8.9 and that was when she was 18 months old.

Scott Benner 17:58
Yeah, and it sounds like that's what I mean, listen, I'm not a doctor. I am a guy that makes a podcast, talks a lot of people, if I were in trouble, I mean, I would still do it right now, I don't know why you wouldn't. You know what I mean? Like, see what happens? Is she tired, often not

Toyya 18:13
horribly. So, no, before she was diagnosed, she was, I really don't see this the obvious symptoms. That's why you know, she's not cold or having hair, skin problems or regularity.

Scott Benner 18:25
How tall are you?

Toyya 18:26
I'm five six, and my husband's five six. So I always thought it came from my husband, because they're very short. You were just looking for

Scott Benner 18:34
a reason to blame your husband for something. I see what's going on? Well,

Toyya 18:38
seriously, his cousin and our red his cousin our wedding was five foot two, a guy, and so they definitely have some short genes. So, you know, the endocrinologist kind of said, you just said, Well, she does have short, short stature, but she's exhibiting some growth. Show growth. Catch up. Her mom was skinny. She was 110 and she got pregnant, and basically it just kind of all got written off, you know. And so that's

Scott Benner 18:59
all I'm done. And you being a physician, do you have thoughts about it like, I'm interested in how. I mean, well, because the psychology of this is interesting, right? Because you don't want to be second guessed at your job. So when you disagree with a doctor who's telling you something about your kid, does that stop you from speaking up? Or do you use what you know to say something a little

Toyya 19:19
bit. I mean, what happens a lot of times with when you're a physician, when you go to a doctor, they don't explain things very well, because they just assume you already know it. They kind of jump past things and don't really give you a good explanation. You know, at the at the time, when she was short and small, she's always been really tiny, real skinny, she was doing acting, she's saying, and she had an agent, and she was doing, actually, in some commercials, and did some some filming for some short films and different things. We were always told, Oh, this is great. She's tiny, she can play young. She's 12. She looks like an eight year old. And you know, they can get a lot more acting because they're better actresses when they're acting role the younger child and they're actually older. So we really didn't worry about it too much. We thought, Oh, this is. Good, so it's great for acting. But then when she got, you know, type one diabetes, it sort of sank in. She stopped acting anyway. She just kind of got depressed and

Speaker 1 20:09
and gave all that up. She's, she's depressed too. Well, she

Toyya 20:13
got depressed when she got diagnosed. Yes, okay,

Scott Benner 20:15
but it's not a thing that's hanging on now. No, she's

Toyya 20:18
actually better since switching, school into new high school, and just we did some counseling, and things are seem much better. She actually seems pretty happy. Because,

Scott Benner 20:26
you know, I think what they call low mood could be attributed to thyroid too. Yeah, is she ever short tempered? Yeah, she

Toyya 20:35
does get short tempered,

Scott Benner 20:35
yes, and oh yeah, I'd get some of that good Synthroid in her and see what happens. Also, I think she could keep growing this kid might owe me. She might be three inches taller one day and be calling me uncle Scott for this. So like, let's, um,

Toyya 20:49
we, we actually went. I tried to get growth hormone. I recently, since she was diagnosed, I started reading about, you know, idiopathic short stature. And even if it's not familial, she's not reaching her her adult height based on me and my husband. You know, it's the average of the parents height, and then minus two inches or so, she should at least reach five, four, right? You know, there'd be some standard deviation around that, but, you know, it's still put her at minimum of 411, she's not reaching her minimum expected adult height, and she's not grown in a couple of years.

Scott Benner 21:18
Would her endo write her for this and give you a script. He did growth

Toyya 21:23
hormone stimulation tests, and she doesn't have, she doesn't have any deficiency and growth hormone, but he said that she either, we could get it for idiopathic short stature, but there was a shortage in growth hormone, and so we kind of went around right now, there's a shortage of it. It's real hard to get, and we were going to have to pay a lot of money for it, and I don't know, we just thought it probably wasn't worth it. We thought, well, she's probably done growing at this point. Growth plates are probably fused. And have

Scott Benner 21:48
you had them checked? If she had an x ray? We did the X

Toyya 21:51
ray. She just had one done recently, and it showed, oh gosh, she's not her. See, I showed, I think she was within the normal range on the growth plates and stuff. I mean, I'm not exactly sure that. To look back and see

Scott Benner 22:06
that's my kid. I'm throwing Synthroid at her, like she's a seal. I'm like, Here, catch these and, like, because, I mean, what could it if her TSH is in the threes, it's not going to hurt anything. You know, you're not going to, you're not going to make her hyper. So, like, I mean, what the hell? Like, even if she grabbed an inch out of it, who would care? You know what? I mean. Like,

Toyya 22:25
take asking them every time she goes in, can you draw the thyroid antibodies again? Can you do do this and they will just once a year, check and I'm like, don't you remember her thyroid antibody was at one point positive. She'd been high. I want, okay, we can check it, but they don't.

Scott Benner 22:38
Why do we care about the antibodies and not the TSH. Just treat the TSH.

Toyya 22:43
Yeah, yeah. Well, I was thinking more like for autoimmune you might see the antibodies, but I just, I feel, I guess, after we'd be a little bit concerned, they would kind of resist me in what I'd say. But yeah, I guess I could try that.

Scott Benner 22:54
Listen to you. Let me just don't you know a doctor, you know what? I mean, yeah.

Unknown Speaker 23:01
Like, right, yeah. Let's,

Scott Benner 23:02
um, let's get that TSH down and see what happens. I believe she starts growing. I want a card at Christmas. That's all I'm saying. Just a nice card, like a Christmas scene on the front, little snow in a tree. It just says, Merry Christmas.

Toyya 23:15
So Arden started growing, just with the centroid older of an eight God at an older age. Well,

Scott Benner 23:23
I mean, she was, I don't know how old she was. I'm trying to remember back now, uh, 11 or 12, maybe. But I mean, she, she was, listen, my daughter played softball very competitive for a very long time, for the same group of men. Okay, they were the coaches, and she stopped playing with them when she was 12. When she was 16, one of these guys ran into my wife in a store, and they were standing and talking. My daughter was off somewhere, looking at something, and came back and then stood behind my wife while she was having this conversation with this guy that went on for a number of minutes, and then when it ended, when my wife and the man were done talking, he asked to be introduced to the person that my wife was with, wow, and it was Arden, who he had known fairly intimately with time and conversation Face to face since she was like, six,

Speaker 1 24:21
and he did not know it was her. Wow, yeah. So yeah,

Toyya 24:27
I feel like we'd really, yeah. I feel like we've really missed something. I wish we had really, like, Ah,

Scott Benner 24:35
well, no, I can see every one of the paths that you looked at. You know what I mean? Like, I can see all the decisions you made, they all make sense. I would have thought about all the same things. So would I think everybody else. But I'm just saying I don't think it's too late. And even if it is too late for growth, it's not too late to get her TSH down. Yeah, you know, I don't know. I'd go for it. I actually, I have something here I'd give you if you live nearby.

Toyya 24:59
Yeah, I'm sure I. I can probably convince them to do it.

Scott Benner 25:01
Yeah, I would imagine that if they don't take your word for it, like none of us have a chance calling our doctors

Toyya 25:08
Exactly. Yeah. Anyway.

Scott Benner 25:10
So I enjoyed learning about your family now we have some like, more specific things I'd like to talk about based on your notes. Sure you said here about you know, what would I like to cover in my episode managing teenagers with a pump algorithm, and when you cannot follow details and they don't input carbs or count them, it's pretty specific, yeah, go into a little bit about what's happening. If you take insulin or sofony ureas, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with G, VO hypo pen. My daughter carries G voc hypo pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar in people with diabetes ages two and above that. I trust low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, jivo kypopen can be administered in two simple steps, even by yourself in certain situations. Show those around you where you store GEVO kypo pen and how to use it. They need to know how to use jivo kypopen before an emergency situation happens. Learn more about why GEVO kypo Pen is in Arden's diabetes toolkit at gvoke, glucagon.com/juicebox, gvoke shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma, or if you have a tumor in your pancreas called an insulinoma, visit gvoke. Glucagon.com/risk, for safety information.

Toyya 26:43
Well, you know, so she does the OmniPod five when we started out on it, and I've been listening to the podcast since shortly after diagnosis. I listened to it regularly, and I think I learned most of what I learned from the podcast. So I tried to teach her a lot of that. And we kind of went into the OmniPod five pretty fast, kind of switching it over to actually manual, because we just, I felt like it just couldn't keep up with everything she was doing. She was playing basketball, she was she'd go through some times where she was more sedentary. She'd have her menstrual cycles. It just was a lot of changing. It seemed like it was always trying to catch up, and the algorithm was not able to do that quite so well. I did a lot of that heavy correcting at night, you know, and she would get high, just thinking it would learn how much she needed, and it never seemed to fully fix it. So, and I think I did a lot of, like, you know, text, a lot of texting, you know, you need to treat this high, you need to treat this high. And you do this, you need to correct the low and and, you know, I think that she was, you know, she was depressed during the time and such, and that she's always had a really good hemophone ANC, since she was diagnosed, since after diagnosis, it's improved significantly. But I thought, well, maybe we're, you know, at this point, she let me kind of backtrack and say, when she first got diagnosed, she was supposed to go to her first away camp. And as soon as they found out she was diagnosed, and I was filling out the paperwork, she'd never been to camp, they called and said, I'm sorry, we can't take her. And they said she's in the honeymoon phase. We don't allow phones. She can't go. So she got real depressed, and then she couldn't go to sleepovers. And we're like, all the kids have to come to our house. You can't sleep over and and so now she's doing much better, and we she can do sleepovers with a couple of people that we trust really well. I think I felt like maybe we're trying to, you know, we've got our hemoglobin a 1c in the low fives, and I thought maybe we're just over stressing and overworking this too hard, because this is the way I would manage it if it were me. Maybe we should just sacrifice the hemoglobin a 1c a little bit and not be as tightly controlled and let her just kind of see what she can do. Because she's going to be in college in a few years, and we have to, she's got to learn this. Yeah, you know, my husband was concerned. Hey, you're doing everything for her. You know you're trying. And she's got them the pump. And we gets really frustrating because she we have a hot tub, and she'll have all these friends over to spend the night. And of course, when she gets in the hot tub, we I get my signal that says no reading, no reading, and it's so frustrating me my husband are trying to go to sleep, so I'll turn, I'll turn my phone on mute, and so I don't get the signal. Two o'clock in the morning when they go to bed, she's 280 or she's like, 40 or something. It should be finally, when she finally reconnects to her Dexcom getting out, or her OmniPod is peeled off in the hot tub and she forgot to replace it. And it's just the frustrations where I feel like there's so many times where she'll do things like go down to the kitchen to get and she sees something she won't see. She'll just go and start snacking on it, and her controller will be upstairs. Her phone's always with her, but her controller will be upstairs, so she'll just pull out a pin out of the drawer and get a shot or two. And I'm thinking, well, that really messes up your algorithm. When you do that, it doesn't understand what's going on, right? So so we went back into automated and kind of let her take more control. We're just there to, kind of is, for like, you know, bad stuff, more or less.

Scott Benner 29:48
Is there a possibility that she honeymooned when she was first diagnosed and on OmniPod five?

Toyya 29:52
Yes, she definitely did, probably for about nine months or so. I think she she was honeymooning, for sure. Her and then she she'd been pretty steady, steadily, had increased needs for insulin lately. You

Scott Benner 30:05
feel like the honeymoon is over? I do. Yes, it's possible then that just starting over again, like resetting the algorithm, would be helpful, like refiguring out your settings, because if you started with, like, significantly lower settings, and then the honeymoon ended, it's going to slowly adjust, but it's not going to adjust quickly enough. Like, you know what I mean? Like, like, I would plus, if you ever go back into manual mode for any reason, then the settings are going to be all wrong, because they're going to be set for back when she was honeymooning,

Toyya 30:36
right? Yeah, I think we have adjusted them quite I mean, I've made a lot of adjustments with the settings, though, while she was in manual. And I think it's actually the settings are pretty close down, pretty good, pretty good, to where they should be. I can show she will switch back to manual sometimes, like, well, she forgets to put it in automated when she puts a new pump on a lot of times. And also she'll if she's going real high, sometimes she'll just switch over to manual, just because she knows it's going to pull her back down. Do

Scott Benner 31:02
you think this is her pushing back on diabetes, or is she sort of like this, personality wise with everything?

Toyya 31:07
Just personality wise. If we give her a chance to go spend the night over with a friend, she's amazingly on top of it, like if I call her for a low she's like treating, treating. She'll send us a text, and she's just wide awake. But at night when she's here at the house, she'll just sleep through anything. You can not wake her up for. I'll call her on Alexa ping her phone. Won't wake up for anything. Yeah, so, you know, she can kind of fall back on this.

Scott Benner 31:31
I think they feel comfortable being at home, and it's not a thing they want to do. So maybe it's, I mean, Arden does that. She'll come home from college sometimes and be like, can you do this tonight? And I'm like, okay, you know. And then, and then she won't wake up. Like, beeping doesn't matter. But then, yes, the night before, she was at school by herself, and, you know, something happened, and she woke up in the middle of the night and took care of it. Yeah, yeah. So, you know what I mean? Like, sometimes it's just the necessity, and sometimes it's just they won't do it. Like, I don't know which one your daughter is, but for Arden, it was necessity.

Toyya 32:02
Yeah, I think it's probably more, more that I don't, I think she doesn't, doesn't purposely want to let her her sugars go become bad, or she, I mean, she's managed to keep her hemoglobin a 1c in the five. So it's not, yeah, she's doing, she doing really great, of

Scott Benner 32:14
course, yeah, but yeah, any real terrible lows? Or is she pretty

Unknown Speaker 32:19
stable?

Toyya 32:20
My husband said he thinks she probably got down. She may have gotten down into, like the, maybe the 28 or something once. I don't know, I didn't see that one. So she she, she gets down. She got into low with an arrow down before. So I'm not exactly sure we have sugar mate. And so usually can kind of go back and kind of do the math and look at the change and kind of figure out where she was, but usually it's in the 30s. She she, um, has not been going low nearly as much now that we're doing automated that's, that's been helpful with sleep and everything. Okay?

Scott Benner 32:51
That's, well, that's great that I'm glad that it's helping her sleep, at least. And you guys, yeah,

Toyya 32:56
she does over correct, you know, some and she's kind of, she gets pretty aggressive. I'll tell her. I'll say, Well, what you ate that's gonna bring you high. I know you're gonna have a hard time getting that down. Some of those sticky has, you need to work on it. And sometimes she'll kind of rage bolus for her, and then fall,

Scott Benner 33:11
rage bolus and fall. That doesn't happen. Anybody do you overall think that she is on a good path for when she gets to college, or are you actually worried she's

Toyya 33:25
probably on a good path? I mean, we worry, because there's been, I always hear these stories and endocrine and people say, Don't let your pump. Your pump runs out for more than a couple hours. You're not getting insulin, you can get into DKA pretty fast. Yeah, and she's had a handful of nights where she's gotten it's usually getting out of the hot tub, or she has a sleepover, or head sprints over. Her pods run out, and she's taking it off, and she's forgotten to give her basal Gore, she's forgotten to do anything, and she's gone to sleep for, I don't know, some some hours, I usually see it getting hot at some point, and I'll go in there and say, hey, you know you're you're getting in, like, the 260s 270s you know what? Why are you so hot? And she go, Oh, I forgot to put my pot on. Oh, you know. And that I've seen that happen. So that sort of thing concerns me, you know, yeah. And she's bad about remembering sugar too. And to treat sugar treatments, we've been in hotel rooms before we gotten in there at night, and that everything is closed down the front desk. There's nothing you can buy, and she's getting low, and she didn't have any sugar. So those kind of

Speaker 1 34:20
things worry me. Yeah, how do you parent that? Well, I

Toyya 34:24
usually try to, like, every but she had, she recently went on a mission trip to Jamaica with her school, and I went with her. We've gone on all four trips with her. I feel like I need to make sure that the insulin staying at the right temperature. We're working outside building houses, all this stuff, and so I always make sure there's a when she goes to a sleepover, I'm like, you make sure you get this, make sure you get your finger stick machine, make sure you get your G vote pin and all that. So I don't know. I'm not real sure how she would do. I haven't backed off enough to see that. Yeah,

Scott Benner 34:51
I mean, I listen, if it was me, I would say it's a non negotiable. If your pump falls off, you stop what you're doing. To put another pump on? Yeah? Literally, just non negotiable. If you don't do that, we have a big problem. And, you know, yeah, I'm not drawing a lot of lines in the sand, but here's one of them. I don't think I'm being alarmist about that. You have a pump fall off at 10 o'clock at night and go to sleep, you might not wake up in the morning even. Yeah, yeah, that's not a joke. You know what I mean? Like, I'm definitely not coming down on you. But like, the idea like that there was no insulin for a number of hours is insanely dangerous. Yeah, yeah, no, I know it is, yeah, and, you know, but like, you're in this, you're caught in this vortex where you're just talking about it like, it's a it's like, it's another Tuesday. Like, this happens sometimes that can't, like, That can't, yeah, that can't happen. You know what I mean? So she

Toyya 35:42
gets in the mindset of, like, when we go, like, to a beach vacation or something, she'll say, Okay, for this week or whatever, I'm going to go off the pump and I'm going to just do shots and but we do your basal Gore, you know? And so she gets, she knows she can. She's pretty comfortable going back and forth, like, it falls off. And we there's been a couple of days where she's like, you know, I don't want, I'm kind of tired. I want to take a break. My skin's kind of irritated or wherever I'm using the same site too much, and so she'll want, well, I'll go, Okay, well, you have to get basal. And I set an alarm, and she'll, she'll kind of forget to give it. We'll have to remind her she's out of the, you know, the routine of getting it, yeah. So I think she's gotten comfortable enough where she kind of thinks she can go back and forth. But, you know, I've told her, You can't be without it. You have to have that basal injection. You have

Scott Benner 36:20
to, that's the same thing as taking your pump off. So, like, she literally doesn't have any insulin happening. Yeah,

Toyya 36:26
exactly. I'm shocked. Have you ever checked her? Yes, when she takes it, when I find out it's been off and she's high? Yes, I do. We have a ketone meter too, and I've she not ever had any really bizarre, bizarre, hmm, kind of I mean, since she was diagnosed, really, that I knew of, I never found any. Yeah,

Scott Benner 36:42
that's really, oh, listen. I mean, none of us should have children. This is what's gonna happen if you have a

Toyya 36:48
kid. It didn't make sense. I thought, surely she's gonna have ketones. Yeah? But yeah. I

Scott Benner 36:52
just mean, they're young, and they do what they want, and they don't care about their safety and, like, does she really unders? Can I ask? Does she really understand beyond, like, you can't do that. Does she understand why she

Toyya 37:02
should? I've tried to explain it to her, so I think she does. I think she just kind of has that, you know, nothing's gonna happen to me attitude, you know, it's not gonna be me. Yeah, no kidding. Actually, she's actually, she did say this once. It sort of annoyed us that she did tell my husband. She said, you know she cares. He was talking about me getting low and treating your lows and getting on top of it, and she kind of didn't. She doesn't want to over treat, and then she don't want to get high. So she she says, Well, Dad, she goes, You know, I'm going to have a seizure at some point. You know I'm saying you are not. Don't say that. That's crazy. You don't have to have that attitude. You may never have a seizure, and we don't want you to have a seizure. You don't have that attitude.

Scott Benner 37:37
She's planning for it. Or do you think she's excusing her what she's doing.

Toyya 37:42
I think she just kind of has this attitude and thinks, you know, it's gonna happen. It happens to everybody. It's gonna happen. I'm like, No, it doesn't happen to everybody, you know. So, yeah, that was frustrating when she's I don't

Scott Benner 37:51
have to try, because there's no way to stop it. Do you think that's the attitude,

Toyya 37:55
you know? I don't know. Maybe I don't know. Interesting. How

Scott Benner 37:59
do you find out. You know what? I mean, like, you have that kind of, like, what kind of relationship do you have with her? Do you have, like, a sit down, serious relationship with her? Is that more your husband's vibe with

Unknown Speaker 38:09
her? No, it'd be more,

Toyya 38:11
well, probably maybe both of our sides. I mean, we'll be both. She's just kind of a little, she's like, she's more close to her friends, and likes to have deep conversations. We can sit down and have conversations with her from time to time and talk. And, you know, I can't get her to, like, listen to the podcast or she or go into great, great detail without annoying her. But she, I think she understands it. She's actually quite bright, yeah. How

Scott Benner 38:31
were you as a child, the way she is? Does it mimic you or your husband as a kid?

Toyya 38:36
Gosh, Emily, she probably like my husband. I don't know. I was very, I was very, just like, type a very organized and very, you know, I would have probably, I think, I don't know what I would have been like with diabetes, but if I had it now, boy, I'd be like, I love it when she gives me her controller. And I can just like, okay, here I'm gonna treat. I'll just like, watch the arrows. I'm gonna give you a little point eight here. And then we went to Jamaica, and I had her just like, fall on a nice, smooth wave the whole time, but when she takes over, it gets crazy

Scott Benner 39:04
that controlling Scratch is a nice itch for you. It sounds like, yeah, if she's more like your husband, maybe he'd have more success talking to her about it. Because I'm gonna guess that you're basically like, you come from your perspective. You're like, I don't know why you wouldn't do this. This is obviously what you're supposed to do, but her brain doesn't work that way, so maybe somebody who thinks like her could be more persuasive about it. Maybe, maybe. So, yeah, it just makes sense to me. Because, I mean, we have that delineation here. A little bit like Arden and I are kind of more, like maybe artistic or free flowing and honest. That's how she is. Yeah, and Cole and Kelly are more, like, there's ways you do things and rules and stuff like that, yeah? And I don't think, I don't think about any of that, yeah. Like, I never think about rules. I think of a speed limit as, like, a suggestion, and if they can catch me, then fair enough. Like, you know what I mean. But my wife thinks of it as, like, you. You don't go over the speed limit because you're not supposed to, right? So when she tries to talk to me about driving a little faster than the speed limit, I'm like, I don't know what you're saying. Like, we're making great time here. We're safe. Like, you know what I mean? I'll start saying, like, on the autobahn, you could drive 100 miles an hour, and we're only going 80, you know, like, that kind of thing. But she's like, No, this is wrong, and so she can't be persuasive with me be about that, because she doesn't she, in no way, shape or form, understands how I think about it, and I can't talk her out of being worried about it for the same reason. I wonder if you and her aren't having that problem when it comes to some of this stuff. Yeah, I

Unknown Speaker 40:37
don't know that could be

Scott Benner 40:39
just again. Listen, I'm also not a psychologist. So, and be very clear, I'm a guy whose kid has diabetes who figured out how to, like, hook this microphone up. So you probably shouldn't be listening to me at all. It's just interesting. You know,

Toyya 40:53
I know independence was just really important to her, to have her friends and to be able to go to sleepovers and be able to not have to, you know, be kind of controlled too much. So that's she felt over controlled. That's, that's what she told the therapist, and that's when she was depressed and stuff. And, you know, initially was embarrassed about wearing things visible and stuff, and I think she'd gotten over that. Now it's

Scott Benner 41:13
a lot. No, I mean, there's no doubt it's a lot. There's just a couple of things that have to be off the table, and having insulin should be the very least of them. Like, I mean, you should, you should not have to have a conversation about that. Like, oh, I

Toyya 41:26
know, you know what. I mean.

Scott Benner 41:27
I'm sure she's not doing it every day, but it sounds like it's a fairly frequent occurrence for so it

Toyya 41:32
is always with a hot tub and sleepovers. They stay up real late and they just, they get in there, and we can't get the readings for so long, so we end up going to sleep, and we have sugar mates. A sugar mate starts calling. Eventually it'll call us, even if we mute our phone because it's given the no no sugar signal, but it'll still start calling. I have

Scott Benner 41:48
to tell you if that happened twice, and I mentioned it and it happened a third time, I would go out and drain the hot tub. I would just let all the water out into the driveway, and I'd go, well, fill that back up when you figure out you have to have a pump on all the time, yeah. And this is not a punishment. I'm just concerned for your safety. So I don't, like, just, like, if there was a tiger trap in your driveway, you'd move it, you know what I mean, like, and I think that that I don't see this as any different, really, like, you know? And if she saw it as different, then I would sit down and say, it seems like you feel like you're being, like, persecuted here. But I just want you to know, like, this is a safety feature. I can't, I can't let this happen. You might not see the big picture, but it's very dangerous. You could end up dead, or at the very least in the hospital in DK, I'm not going to do this. Like, so if this is our problem, I'm going to get rid of our problem. Yeah. Think about your electric bill. Your electric bill goes so much

Toyya 42:46
floods gas. She puts her OmniPod, OmniPod on the back of her calf. For some reason it's way down. She jokes about it being her air pods stuck to her leg that she has it on the back of her calf. I don't know why she wears it there, but she it's always in the hot water yet, so submerged, can

Scott Benner 43:03
you not say to her, Hey, if you're going to jump in the hot tub, can't you just put the pump on your arm?

Toyya 43:07
I actually, she's, I'm not one of them. No, it leaves marks. At least she's kind of got sensitivity, since skin leaves a little marks, it does kind of, she has some she had a real bad rash one time that hives all over her body, but we think it was due to a medication, but around the sites of the pumps and stuff that flared up even more because those were irritated sites. Yeah, so she just skins real sensitive. Well, I

Scott Benner 43:29
don't want her to have a flare up, for sure. But have you tried money? Have you tried a little like every time you do this, right? We'll, uh, we'll put to the fund for new clothing or shoes or whatever. Yeah,

Toyya 43:40
we should, we should do that. She loves to spend money.

Scott Benner 43:45
She's got that all figured out. Does she

Toyya 43:47
Yep, and fix those are driving too. So I'm like, Okay, you got to be responsible. You got to have all this stuff with you. So it's a little, you know, just, I think when it goes on the when we when the iPhone is able to start, you know, being the controller for OmniPod, OmniPod, that'll make things a lot easier. I even mentioned like getting that night scout and doing more things, kind of like what a lot of people in the podcast do, like the looping and stuff, where I would be more involved, but she's like, No, Mom, no, no. I do not want you to know when I enter carbs. I don't want you to know what I'm doing. No, she does not want me to know everything. I have to really go back and try to look at the controller and figure out. Now, why did you go so high? Now, what happened here? Do you think you didn't get the pre dose at lunch? Are you sure you pre dose and, you

Scott Benner 44:25
know, and ask a lot of questions. Have you asked her why she doesn't want you to know? I

Toyya 44:29
think she just feels like I've been too controlling.

Scott Benner 44:31
So okay, so Toya, is this a, let's be honest with each other now, sorry, this is hard. Is this a you thing or a her thing?

Toyya 44:40
No, I think, I mean, I think that. I think I think more than when I'm trying to figure things out, I'd like to just say, I will try to ask, you know, why did you go so high, or why have you been so high? And then usually the answer is like, Oh, I forgot to put my pod back on. So, you know, I feel like I kind of do need to be asking the questions. I don't feel like it's, you know, I feel like that it would kind of get neglected if I didn't, you

Scott Benner 44:59
just. Described yourself as Type A earlier. What was your mom like? Oh, gosh. She

Toyya 45:04
was very, very type a super. I think she's OCD undiagnosed.

Scott Benner 45:08
How did you enjoy that as a child?

Toyya 45:11
It was just she, I don't know. I got used to it. It was a lifestyle. Was that you had your trash can in your bedroom had to be emptied every night before you went to bed. Your bed had to be made every day. Things were just really so, so neat, no, very organized. And there's kind of, I've had to give up all that. I've had to become a very sort of sloppy person getting married to my husband and kids to keep harmony. So we're, we're so we met somewhere in the middle, but we're on his side. And so we're, we're pretty messy.

Scott Benner 45:36
So here's the here's what I'm saying, you were able to temper yourself with your husband's personality, like you blended yourselves together, and you got rid of a little bit of that stuff your mom put into you. Yes, you didn't enjoy this about your mom, but you're like minded, so you were able to assimilate to it. Yes, but your daughter's not like minded. And what I'm wondering, and I don't mean this to be hurtful, so, but I'm wondering if what she means is, I don't want you involved, or I don't want anyone involved. I don't know. Maybe it's about, you know what I mean? Like, could it be about you? I

Toyya 46:10
don't know. Most of the time, she's pretty. She's pretty. She would suggest something like, I think you need to do this, or you're fixing to play basketball, so don't be sure. Don't like, overdose for the you don't want active insulin on board. I'll give her little tips and tell her what I've learned, or things I'll learn on the podcast, or try to educate. She seems pretty receptive to it. I mean, oh, okay, okay, thanks, mom. Okay. But it's, it's a little bit of a mix. I don't know. I think my husband doesn't get into the nitty gritty of it like that. He'll, he'll just kind of catch the lows. He doesn't really go over. Has too much. She doesn't really comment on

Scott Benner 46:41
him. So interested. What would happen if you sent the information through your husband like an intermediary?

Toyya 46:46
Yeah, that's true. And I could try that.

Speaker 2 46:48
I would. Can you just put him in charge of the pump thing? Like, be like, Look, it's we made these babies together. Here's what I need you. Here's what I need you to do. She can't be without insulin, and she's not listening to me. You need to take care of this. Like, yeah, and I don't go

Toyya 47:06
up there and get get on your discovers.

Scott Benner 47:09
I don't mean when it happens. I mean stopping it from happening. Like, put him, oh, yeah, put him in charge of getting past this part. Okay, because she's gonna have to get past that, and you're not having any luck with it. So why don't you like, like, put him on it?

Unknown Speaker 47:24
Okay, yeah, that's a good idea. Yeah. What's

Scott Benner 47:26
his other job? Does he take out the trash?

Toyya 47:29
He's an attorney, but he works out of the house here all the time.

Scott Benner 47:32
Sounds busy, but not too busy. Also sounds white collar. I basically have a white collar job, and I want to tell you I have free time in the middle of the day. It's fine, so, yeah, I can get up and have I sometimes, you know what I'm gonna do today? At one point I'm gonna be like, oh, we need dog food. I'm just gonna venture out and get it in the middle of the day, like, it's not exciting, right? I'm not doing anything big, but I have that kind of, like, get up and walk away. I can build into my day if I need to. I'm just saying, Yeah, that's nice. I'm just super like, I think I can make this girl taller and wear a pump the way we do it, Synthroid and getting She's literally

Toyya 48:06
going to be 16 September's. I just didn't think there's any room for it actually really grow. But, yeah, I don't know if that would help. What would it hurt? You

Unknown Speaker 48:15
know what? I mean,

Toyya 48:16
yeah, it couldn't hurt. Yeah, I suspect the thyroid and the, I mean, the triglycerides, and everything went back to normal after they treated her her sugars. That's the weird thing. So I mean, I don't know if you've seen people that have had high triglycerides before diagnosis, like for quite so many years, but her triglycerides and cholesterol both really high, and after she was finally treated for type one, they went back to normal, but they were high for years, and with a normal hemoglobin ANC is

Scott Benner 48:41
weird. I've never heard of a lipidologist until like, today, so, yeah, that sounds like somebody to me. I was like, That's very interesting. I'm a talkologist, if they're a lip lipidologist, yeah, lipidologist, very specific.

Toyya 48:55
Like, yes, it is very but, yeah, I

Scott Benner 48:58
don't know, like, so I'm saying I don't see a lot of kids being tested for triglycerides, I guess, you know, yeah, they

Toyya 49:04
should do it at nine for everybody. Now, they should. They should be.

Scott Benner 49:07
You were saying, Yeah, that's interesting. Well, maybe they are more so now than that in the past, I wonder. Are they doing that because it's important? Are they doing that because they want to sell meds?

Toyya 49:16
Well, they've done it. Those kids don't end up getting on meds usually, but they just, they just put they just determined that, like, if you if you're going to have problems with cholesterol and triglyceride, I believe the way it does, you see a spike around the age of nine. They tend to kind of go up, and then maybe it's pre puberty, and then they kind of can sometimes normalize a little bit, but then creep back up into adulthood. But mainly it's looking for the familial things, so things that run in the family where you're going to have the unusually, like, like problems with just, you know, your your lipids, like processing them, and they're going to have unusually high cholesterol and triglycerides. They're trying to catch that so they can treat it. Yeah,

Scott Benner 49:51
I'm a little stuck. I listen again, what I know could fit in the thimble, but I'm a little stuck on the idea of this, like, these medications for cholesterol. Became common, and then all of a sudden it was test everybody. Then all of a sudden it was, Oh, if they have diabetes, just give it to them, even if we have to do it prophylactically. And I wonder if some at some point they didn't say, I wonder if it would help kids. And then they did a study and decided now you have to be tested with nine for that. You know what I mean? Yeah,

Toyya 50:17
I don't know. Yeah, I have a lot of patients that come up high and they have to be fasting. It's a regular, regular occurrence. But do

Scott Benner 50:23
you put them on a on a med for that? No,

Toyya 50:27
I refer them to the lipidologist. Yeah, there's so many side effects of those medications and stuff. So, yeah, I don't know. I usually just counsel on diet and exercise. And I'm like, Oh no, no, you gotta go. I do a lot of referring to endocrine for a lot of high insulins, mostly type two diabetics, pre diabetics, have a lot of that. I've only diagnosed a couple of type ones in my practice in 21 years. It's just they, I guess they mostly go to the ER,

Scott Benner 50:52
yeah, by the way, I might be calling this episode lipidologist, for no reason other than it's a funny word,

Toyya 50:57
that would be good. Yeah, it is.

Scott Benner 51:01
What an odd word. I don't know why. This cracks me up. Okay, what else are we? Should we be talking about that we haven't so

Toyya 51:11
far? Gosh, I think that. Were we doing well? I mean, actually think, you know, except for the what we talked about with her, the things that she's forgetful on, you know, I think she's managed to do okay with just the OmniPod five. Yeah, her, I mean, her, you know, her time and range is not, not that great, but she manages it. I mean, it's, I've got, like, 65% in range. It's not that great, but, and then weird thing is, it says 6.4 on the GMI thing on the on her, her clarity apps. But then every time we go get the hemoglobin, a 1c run, it's always in the fives, and she was 5.6 last time when she was managing it. So is she having a lot

Scott Benner 51:45
of lows, lows,

Toyya 51:46
but it says, like right here, it says 24% high, 6% low, 2% very low.

Scott Benner 51:51
What's low on that? On that chart, what are they calling a low, under 60 or under 70? Under 70?

Toyya 51:58
Yes, because I have a I'm assuming because I had the range set from 150 to 70. So I'm assuming anything under 70 would be counted as

Scott Benner 52:07
a low, and you're getting highs or being counted over 150 Yes, uh huh, yeah. So you're doing it sounds like you might be. Is she really banging up and down? Like? Is she going way higher than 150 and then low, over and over again,

Toyya 52:20
the 200 sometimes after she eats, you know, occasionally, if she doesn't pre bolus or correct it, like to kind of recognize it and correct it on her own, she usually runs pretty, pretty good, you know, when, I mean, in the daytime, you know, she's not like, she like, overnights and stuff, or, you know, close, pretty close to 108, somewhere around There, okay,

Unknown Speaker 52:38
yeah. I mean, she

Toyya 52:41
had a hemoglobin a 1c once that was 5.0 we went in in the Oh, no, yeah, it was 5.0 in August. And the endocrinologist said something about, well, that's, that's interesting. That's a mystery. Um, you know, she's spending about, she's getting too many lows. He kind of looks like it looks back at the last two weeks, maybe. And then he said, maybe she doesn't glycosylate hemoglobin. And I was like, I've never heard anybody say that. Have you heard anybody mention that? Well,

Scott Benner 53:06
I was just gonna ask, does she have any low iron issues? Not

Toyya 53:10
that I know of. We've never really checked it, because

Scott Benner 53:12
if your iron, if your firm's messed up, it can report your a 1c weird, because of the way where this is non technical, but the way it, like, sticks to the molecule or something like that, like it can't be counted correctly. That's way not accurate on like, but the idea is there also effects of thyroid hormone on a 1c and like, oh, and glyco gated albumin levels in non diabetic subjects with over hypothyroidism. Let me see something like, I wonder if the unbalanced thyroid is having the hemoglobin a 1c report back incorrectly. Is that possible?

Toyya 53:49
Because it just always seems awfully low. I'm like, I know she's not that she's not running he doesn't think she's really running low or anything too much. But it just seems surprising that she I hear everybody on the podcast like, Oh, we're doing great, working hard. We're in the sixes. And I just she's always been pretty seamlessly in the fives, except for when she was diagnosed. I mean, she was 13 or greater than 13. I'm

Scott Benner 54:11
looking here. Thyroid levels obviously can have an impact on glucose control, on untreated thyroid disorders affect the management diabetes in patients. Consequently, systematic approach to thyroid testing, the results showed increased mean levels. Yeah, I think I feel like, if you I feel like it would make your TSH, your TSH would make your ANC look higher, not lower. Okay, yeah, this is a little too technical for me. The results showed increased means of HBA 1c and normal level of thyroid stimulating hormone, TSH, 4.5 The results also showed a weak positive correlation between a 1c and TSH and an insignificant correlation with thyroxin. Yeah, I don't think that's helpful. What we're trying to figure out here,

Unknown Speaker 54:58
yeah. I. You

Toyya 55:00
just mentioned that, like, maybe she doesn't glycosylate hemoglobin.

Scott Benner 55:05
I mean, the point is, is you want to know, right? Because if you walk, if she walks around thinking what I'm doing is leading to an A 1c in the fives, and it's really six and a half, then she deserves to know that. You know what? I mean,

Toyya 55:18
yeah, yeah. So maybe checking a ferritin would be a good thing.

Scott Benner 55:21
I mean, it couldn't hurt to do a full blood panel and see. You know this better than anybody, but you have to be so careful of just blood tests coming back and everything's green, and you say, oh, it's in range, because a three, a three TSH, for example, is in range. But it sounds to me like she could have used, and still could use the the t4 replacement, and at the same time, ferritin is going to be one of those things too. Yeah, it's going to look right. But, you know, I've had a person I have an endo on this podcast, and she treats my family who said that if you're a female of menstruating age, she's calling 70 for your ferritin, the absolute lowest you could go. And that's low, but the testing won't say that. Like, if you're if your daughter's a ferritin level was like 50, the doctor's gonna say it's in range. But, yeah, she'd do way better if it was higher. And I wonder if, then you wouldn't get a more accurate a 1c as well. Okay,

Toyya 56:16
you know what I mean, something to definitely think about. Yeah, that's something we'll look at. That's the kind of

Scott Benner 56:21
stuff I think about when I'm talking about all this. How does she digest your daughter, food? Come in and go out? Okay?

Toyya 56:27
I think so. Yeah, I don't think she really has a big problem with anything. She's never described it. She's kind of private, but I haven't really noticed anything.

Scott Benner 56:35
I think we're all private about that, but it's saying she's private about it, yeah, there are the families who just walk around talking about all the time. It's very like, you've noticed that, right? I usually can

Toyya 56:49
look at her blood sugars and toe when she's starting her period, does Oh, you got to start your period. Oh, yeah, any day now, I can always tell No, no, 100%

Scott Benner 56:56
you can see the period coming. I can see constipation. What else? Wow. But yeah, because the blood sugar start to rise if you're not processing stuff, right, because it's sitting in your stomach longer,

Toyya 57:07
unless you just said, Never pot on, you're in a different

Scott Benner 57:11
situation. Also, do you not see that quickly when the pod comes off? You don't see it jump up at least an hour later. You know?

Toyya 57:18
I sometimes I just, if I'm, like, busy at work or something. I don't I'm not, like, watching it every second I will. I may not see it. I'll kind of go and I'll see, like, 280 something. I'm like, wow. Why are you so high? You know? I mean, she's rarely gotten, I mean, just one time I can think of she's even gotten to 300 we've been really good at keeping her down. But I just, I'll always call her, nag her, until she treats and gets a lower, even

Scott Benner 57:38
in high, I don't even mean, in the moment, but in hindsight, can you look back and see, like, oh, that's where the pump obviously came off, because here comes the rise.

Toyya 57:46
Yeah, I can usually see it, yeah. Like, like, I'll notice, like, she's just got a sticky hat or something, and then she just, Oh, I forgot to put my pad back on. I gotta put back on, you know, she's, that's right here, yeah?

Scott Benner 57:56
Maybe she tattoo it to her forehead, yeah, yeah. She goes to school,

Toyya 57:59
and she knows it's only got, like, you know, 2020, units in it, and she goes to school and then change it in the morning. She's like, Oh, it's got her so many, you know, it's got so many hours after it expires. You've got the kind of a little period of time, like, where they say the pot expires, but you've got a little time afterwards. Yeah, I think, I think that's the way it works. Well, she'll just, she's aware of that. She's like, Oh, well, it's got so many hours that I can still go on it. So I'll be good. School will be out by the end, but then she forgets to put it on. Yeah? Change it. No.

Scott Benner 58:23
I mean, listen, this is not uncommon. I've I definitely text started, and I'm like, please don't start your day with a pump with 15 units in it. Like, she's like, well, I'll make it to lunch and I'll be back here before lunch. Also, I'm like, Just, please don't do that. Yeah, she will sometimes, but running out of insulin since college has started, there's been a couple of times where Arden has absolutely exhausted herself and fallen asleep. And I've seen and she, I know she thought she was going to make it till morning with what was in the pump, and then she didn't. But as soon as that happens, I can see it, and then I wake her ass up and make her do it. So yeah,

Toyya 58:58
well, it's frustrating when they do the injections or the pin on top of it is, I told her, I said, that's going to mess your algorithm all of it's not going to know what's going on. She'll just say, Oh, I didn't want to. I couldn't find my controller. I don't know where it's at. We have, we have Apple air tag on it, but she still doesn't. It's not charged, or it's dead or something.

Scott Benner 59:16
Yeah, I mean, I don't listen. I don't have diabetes. And I'm sure there's aspects of this that I'm not thinking about, but it takes, like, a minute to fill an OmniPod and put it on. Like, when you're really good at it, it takes no effort at all to, like, Listen, if you have diabetes, I know, I don't know, and I know it doesn't feel like that. I'm not saying that. I'm saying actual physical effort. It's very small. So it feels like she just doesn't want to

Toyya 59:39
put the pump on, yeah, enjoy having an offer. Just take some bit to add on and take a break from it or something. She's asked to take a break from it here and there. And we've done it some, you know, vacations and such, right

Scott Benner 59:49
now. Well, you know, we're gonna know soon when you send your husband in there and make him figure it out. He says, No, Toya, you know how to motivate him, so don't I know you can do that

Toyya 59:58
exactly. Be

Scott Benner 1:00:01
i There's any number of weapons you disposable. I think could get him motivated that. Yeah, I'd like to see that anyway. I hope you didn't mind the tone of the conversation. I just thought it was interesting and you were willing to talk about it, so I think it's good conversation.

Toyya 1:00:16
Yeah, yeah, sure, sure. I love the podcast. I've always told that I'm actually for one of the diabetic organizations here. That's national, but I'm a local volunteer for newly diagnosed families to kind of reach out to them and kind of get them involved in the organization. And one of the things I do, I always give my my tips, mom to mom tips. And one of my big tips is the podcast. Oh, thank

Scott Benner 1:00:40
you so much. I really appreciate that. What? Yeah, regular HLB. Oh, I appreciate that very much. What about the show's been helpful for you? I

Toyya 1:00:48
feel like we didn't really learn much from our endocrinologist. I mean, I learned diabetes and medical school many, many years ago, but it was just all the, the, you know, the mph and all that kind of it was not. It was like we don't. It was not like we treated today. And so I just didn't feel like they really taught us a lot. I remember the endocrine nurse telling us, oh no, it's common. My son has diabetes. And Yoga, you can go up to 300 or so after a meal, as long as it eventually goes back down. And as soon as I started listening to the defining diabetes and the pro tips and all that. I was like, this is just, we're gonna set her if you set your expectations lower, you know, you will react sooner. It made perfect sense. And I learned. I've learned. Just learn so much. And so I said, we're gonna set our our range much lower, like 140 or or so, where we get alarms, and that way you will, you'll start, you know, reacting, and you'll be aware of it when you're getting higher. And so it's that, that's the biggest thing right there. But just everything, I mean, learning how foods are digested, and it's all been amazing.

Scott Benner 1:01:48
I'm glad. I'm very happy to hear that, and I appreciate you very much out there telling other people about it. Thank you,

Unknown Speaker 1:01:55
of course. Yeah, very, very helpful. Oh,

Scott Benner 1:01:57
I am very helpful. Scott is really good. That's maybe I'll make that the episode title. Scott is very helpful. Somebody. If

Toyya 1:02:07
I could just get, just get my daughter to listen to it, it'd be

Scott Benner 1:02:09
great. Well, I think your daughter's having fairly common 15 year old reactions to things. You know what I mean. I really do. I would just say that you probably just have to persist and look for other ways to get through to her, that there are some things that we just we don't live with, and the her being in danger is one of the things we're not okay with,

Toyya 1:02:30
right?

Scott Benner 1:02:31
You know what? I mean, honestly, that's how I think about it, like it's, it's, we're not going to not wear our seat belt and then just say later, like, Oh, I forgot to put my seatbelt on. Uh huh. We're actually gonna figure out a way to remember to put our seat belt on, and then, right, we'll move on to something else, because this isn't like a thing. I mean, this is basic stuff, right? Like, this isn't her feeling overwatched or taxed or something like, this is she's got to have insulin going like, it's a sad reality of the situation she's in, but it's just not negotiable. Like I said earlier, I don't know, to me, I think that'd be a big deal for

Toyya 1:03:05
we said, this may determine where you go to college someday. You know, you may have to go local if you can't, if you can't get this, if you can't get this fixed, you know, before the end, and we can't see a good, you know, amount of time that you've taken the right kind of made the right kind of decisions. We probably can't let you go off somewhere

Scott Benner 1:03:19
that's three years from now. They don't think about college when they're 15, right? She's not worried about college. She's worried about today. You know what? I mean? Yeah, that's sleepovers, right? Yeah, she's gonna go mess around with her friends, and she doesn't want to stop to be the person putting on an insulin pump. And I get that, so then put it on before you leave and do a little pre planning, like that kind of thing, or take advantage of your, I was gonna say insanity, but take advantage of your type a nature and say, like, you know, how do I plan this out? You know what I mean, like, like, how do I make it so that this thing's reasonably so not going to, like, expire in the middle of my sleepover? Or, you know, couldn't I get in the hot tub and then just be planning to change it when we get when I get back out again. Just make that part of the process and and do it until it until it becomes the

Toyya 1:04:09
Dexcom. Because what's it seems like, it never fails, but she'll discover that, like, around, oh, it's midnight, you should have a sleepover. I discovered my Dexcom expired, so I'm gonna have to replace it. Well, this two o'clock in the morning before we get readings again so, and she's been in the hot tub. So if you haven't gotten readings prior to that, that happens a lot, and so and so

Scott Benner 1:04:29
I'm like, Okay, if Arden's listening to this, like, years from now and I'm dead, and she's like, I want to see my hear my dad. And she trips upon this one. That thing that Toya just said is the bane of my existence right now. And I thought it would make me, like, curse, if I, if I thought about it any longer, like, just change the fucking thing earlier in the day. Yeah, so that it, you know, sort of two in the morning. It's not like, beep and you're like, you've got to be kidding me, you know,

Toyya 1:04:57
I started putting reminders on my alarm. I'm like, Okay, wait, you're changing. Okay, so if it change, you change it at 8pm I'm gonna put a note for 10 days later to change it at 6pm so we're gonna keep moving it earlier and earlier.

Scott Benner 1:05:09
I hate that. Yeah, does that help? Because it's and then it's, uh, this thing. I'm like, No, not this thing I told you eight hours ago. Like, I actually the only diabetes thing. I went over with Arden last week, when we were she was on spring break, and we met somewhere, and we hung out for the week. And the only thing I said, Look, you're doing great. I have no comments. I think we have to turn some knobs here on some of your settings, because the GLP medications lessening her need for insulin. And I was like, but other than that, please stop changing the CGM at midnight, please? Yeah,

Toyya 1:05:44
then you she gets low readings too, because it's not where it needs to be. Yeah, it's not. And, like, we get low, we're getting 40s and stuff. And I'm like, is this real now? You got to wake up at two o'clock in the morning and do a finger stick

Scott Benner 1:05:57
and then to find out that your blood sugar's perfect, by the way. You know always happens. And then she's like this thing. I'm like this thing. No, you

Toyya 1:06:06
she hates to check blood sugars in the middle of the night. Hates it. Of course,

Scott Benner 1:06:09
I would too. So then change your CGM earlier in the day. Like, this is like, again, not hard. But I get that there's that other component to it, the part that when you have diabetes, it is difficult, you know, and for reasons that I don't completely understand, because it's not happening to me like I understand all that, but we got to get past that part, and you know, or take advantage of here's another thing you're not doing right now, Arden, the g7 you don't have to be without it. You can slap a new one on three hours before the old one's going to go bad. And then when you swap it over, it's been soaked in for three hours, you get nice numbers, and you're on your way instantaneously. Yeah, this is such an easy idea. And when I bring it up to Arden, you might think that what I've told her is scale, Mount Kilimanjaro. When you get up there, build a rocket, then fly the rocket to Mars, then come back with something from Mars that we can plant a tree with. Might as well be that difficult, because she's like, I can't do that. I'm like, I'm just asking you to switch it earlier, but not push the button.

Unknown Speaker 1:07:11
And she's like, No,

Toyya 1:07:16
oh gosh,

Scott Benner 1:07:17
yeah. It just makes me go, Oh my god. Okay, it's fine. Do what you want, but, but you're gonna wake me up at three o'clock in the morning, and then exactly, I don't want to be woken up, yeah, and then I'm gonna say something to you, and then you're gonna go, why are you up my ass about this? And this is all very fixable, and I'm sure one day she'll just get it. I'm sure if she's listening to it now, and she's 30, she's thinking, I can't believe I did that. That's hilarious. And like, like, you know, and I shouldn't have done that. And if my kid was doing it, I'd be upset too, you know what I mean. So, but in the moment, in the moment, Toya, I don't know how you get through to a 15 year old kid, she's probably thinking about boys and music, you know what I mean. So, right, exactly. Hopefully she marries a boy like you and not like your husband, or they're going to be near to wells in two seconds.

Toyya 1:08:06
Yeah, it's, yeah, I'd say there's probably, there's disadvantages and advantages of every age of being diagnosed. I can definitely see that. I can imagine how a little one, but boy, the teenager, it's tough, too.

Scott Benner 1:08:16
I take your point, and every time somebody says that to me, like, oh, it's the best age to have that happen to him. Like, I don't think there's any good age for this to happen to you. Yeah, there's reasons why one's better than the other, but not you know, it doesn't make it better. My gosh, well, is lovely to speak to you. I really do appreciate the conversation.

Toyya 1:08:32
Yeah, really enjoyed it looking I was looking forward to talking Vicki. I'm glad,

Scott Benner 1:08:36
and I appreciate you. Like mixing in some southern isms and stuff like that. That that was nice. You yelled me a couple of times. There was a couple of words. There's a few words that ran

Toyya 1:08:45
my accents changed so much. I Mom got married, my husband said, I would say, I would say, I would call the called spoon and the fork, and I'd say, y'all get the milks all gone. But in my accents changed a lot since living in living out of now, it's changed a lot.

Scott Benner 1:09:03
I swear you there was a couple of phrases you ran like three words together into one word. And I wish, I wish I could remember what they were right now, because that's what I named the episode. So actually, I'm gonna say to the editor right now, if you hear what I heard earlier, it's like three words run together into one run on Word. Tell me what it is ever done editing, because that that's what I'll make. The title the episode,

Toyya 1:09:27
way too fast.

Scott Benner 1:09:28
Would you say about the spoon and the fork? Though? Say that again.

Toyya 1:09:31
Oh, I would say. I would pronounce fork, fork, because he fork instead of, I guess my husband says, or what do you how do you say for Wait, is

Scott Benner 1:09:42
he saying? You say? Fark, yeah, Bark. Bark, satellite, different. I

Toyya 1:09:45
don't think he makes fun of it. It doesn't sound different to you.

Scott Benner 1:09:48
I don't know. I don't know, but I'm calling the episode Fark. Fark, so the milk's all gone. I know that he says Gone, gone like that's all gone, stretching the. It works.

Toyya 1:10:00
He says, I can get bowed with this, actually, this, this southern Texas accent. When I married you, he said, I thought it was really cute. It's cute on a girl, but if a boy has that accent, it makes him look dumb. Well,

Scott Benner 1:10:11
you know the stretching the words up in the Northeast. I don't know if it's a thing still or not, but girls were doing that vocal fry thing, where they were going like, they were like, oh my god, like that, yeah, like stretching, like, oh my god, shut and

Toyya 1:10:32
they have all kinds of new words they come up with. The kids always make up new words and like, Oh, that's a bad word. It means something. I'm like, what?

Scott Benner 1:10:40
Yeah, well, you sound sus so that's one

Toyya 1:10:44
of them. Thank you very much cake, cake and suss and all kinds of strange things. All right, hold on a second.

Scott Benner 1:10:58
A huge thank you to one of today's sponsors, gvoke glucagon, find out more about gvoke hypopen at gvoke glucagon.com, forward slash juice box. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com, forward slash juicebox. A huge thank you to Eversense CGM for sponsoring this episode of the podcast. Are you tired of having to change your sensor every seven to 14 days with the Eversense CGM? You just replace it once every six months via a simple in office visit learn more and get started today at Eversense. Cgm.com/juice, box. The conversation you just enjoyed was brought to you by us. Med, us. Med.com/juice, box. Or call 888-721-1514, get started today and get your supplies from us. Med, are you starting to see patterns, but you can't quite make sense of them. You're like, Oh, if I bolus here, this happens, but I don't know what to do. Should I put in a little less? A little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the juicebox podcast. It begins at Episode 1000 you can also find it at juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The juicebox podcast. The episode you just heard was professionally edited by wrong way recording. Wrongwayrecording.com. You.

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#1295 Alyssa and her Daughter’s Diabetes

Alyssa and her daughter have type 1 diabetes.

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 wherever they get audio.

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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 another episode of The juicebox Podcast.

Today, I'll be speaking with Alyssa. She's 30 years old, and she has type one diabetes. She was diagnosed at three years old. She also has hypothyroidism. Alyssa has three children, 12, three and six weeks old. Her 12 year old also has type one. 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 when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice, box. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juicebox at checkout. That's juicebox at checkout to save 40% at cozy earth.com and if you have type one diabetes, or are the caregiver of someone with type one like Alyssa, go to T 1d exchange.org/juicebox, join the registry and complete their survey. When you complete that survey, Your answers will help type one diabetes research to move forward, you can do all of that right from your sofa in about 10 minutes, T 1d, exchange.org/juicebox

this episode of The juicebox podcast is sponsored by the Dexcom g7 made for all types of diabetes. Dexcom g7 can be used to manage type one, type two and gestational diabetes, you're going to see the speed, direction and number of your blood sugar right on your receiver or smartphone device, dexcom.com/juicebox, this show is sponsored today by the glucagon that my daughter carries, gvoh hypopen. Find out more at gvoke glucagon.com forward slash juice box. Hi, Scott.

Alyssa 2:08
My name is Alyssa. I am 30 years old. I'm a type one diabetic, and I also have a type one child. Okay.

Scott Benner 2:15
How old were you when you're diagnosed? I was three, seven years ago, yep, 27 years like starting a day off with easy math, your child. Your child has type one. How many kids do you have? I

Alyssa 2:28
have three kids. I have a 12 year old, a three year old and a six week old. Oh, my God,

Scott Benner 2:33
really? Yeah, yep. Which one has diabetes? Uh, my three year old, your three year old. Does any other autoimmune I

Alyssa 2:41
also have hypothyroidism, and then my husband has pulmonary sarcoidosis.

Scott Benner 2:47
Okay. When did he find that out? Actually, about

Alyssa 2:52
four or five months after our three year old was born.

Scott Benner 2:55
No kidding. What is that due to his life? So

Alyssa 2:59
he periodically has to get his lungs scanned and checked. He gets nodules in his lungs that could build up into scarring if it's not treated and taken care of. So he does periodically have to go onto like prednisone or other treatments

Scott Benner 3:13
I see working for him so far. Yeah, yeah. It's

Alyssa 3:16
been working pretty well for him. He gets scanned every once in a while. You know, if he starts to feel sick and stuff, he he'll get it more so in his chest, so he has to be careful, you know, when he gets sick, to make sure that he treats his lungs correctly,

Scott Benner 3:29
yeah, pulmonary sarcoidosis? Yep. I can't believe more people are saying sarcoidosis on the podcast.

Alyssa 3:39
Yeah. I heard an episode not long ago, yeah, talking about sarcoidosis. I was like,

Scott Benner 3:43
Get out of here. But that person said it was like, I know you're making this up, but they weren't, yeah, okay, all right, it is a rare disease. The cause is unknown. Yep, inflammation, I see they call it autoimmune, yes, yeah. All right, well, then there's maybe no wonder your three your three year old, got type one, right? Yeah. What about on your family side,

Alyssa 4:10
nobody else has diabetes. I did have, I guess, a great grandfather who maybe had type two diabetes, and that's about it. And on my husband's side, my mother in law also has type two, but no one, besides my daughter and I have been type one, no more, even thyroid, celiac. I've got some distant family members with thyroid, yeah, okay. And no, nobody has celiac.

Scott Benner 4:32
Just interesting to see how the tree grows, you know? Oh, I

Alyssa 4:36
know. And I know, once you know you have one autoimmune, you're more likely to get another one. So I didn't actually have issues with my thyroid until after or during my pregnancy with my

Scott Benner 4:45
three year old during during it, it popped up at first. Yeah, yeah.

Alyssa 4:49
So I had to take some Synthroid while I was pregnant, and then after I delivered her, I actually had an overactive thyroid, and they thought I had Graves' disease. Yeah, but it turned out that was not the case, and I ended up, my thyroid ended up not producing what it was supposed to, and I ended up going back on Synthroid, and I've been on it since I see is it working for you? Yeah, yeah. I have not had any issues, you know, since after having her,

Scott Benner 5:14
great, that's excellent. And then you still had another baby, because yes, would you have a room open or something like that.

Alyssa 5:22
No, my daughter was diagnosed three days before her first birthday, and we had been talking about trying to have another baby, you know, before that, and then, unfortunately, you know, when she was diagnosed, we kind of said, I'm not sure, not sure if we're gonna have any more. We'll wait and see. And we did. We waited a couple of months, and then we started having that conversation again. And of course, like a weight, heavy on us, you know, if we should or should not have another child. Because, of course, you know, we were worried that if we have another child, you know, someone don't also have diabetes in our family. But we did end up trying to have another baby. And unfortunately, we did have a miscarriage at the beginning of the year last year. Oh, I'm sorry, yeah, and then, but we ended up about within two months later, getting pregnant with our son, who was just born six weeks

Scott Benner 6:07
ago. Okay, well, congratulations, and You named him Scott, I imagine,

Alyssa 6:12
no, his name is Elias, all right.

Scott Benner 6:14
Well, that's fine, okay, that's lovely. Good for you. Congratulations. Very nice. Thank You that we done, or we want more kids? No, we're done. Yeah, I don't know how you're paying for these three, but good luck. Yeah,

Alyssa 6:28
no, we are done. We went back and forth, but, uh, I ended up getting my tubes removed when I had him by

Scott Benner 6:33
hand. Did you just kind of reach in and go like, hey, while you're in there, let's get rid of these. Okay. Well, when

Alyssa 6:38
you So, when you have a planned C section, they give you, you know, the option if you would like to have your tubes tied or tubes removed. And so we kind of went back and forth, but we were like, No, we're definitely, we're definitely done three. Three is a nice handful. What

Scott Benner 6:50
was the, what was the benefit of removal over time?

Alyssa 6:53
So it was our doctor explained it. He they just removed them. Now, I guess, I guess it's easier. I don't really know what the benefit is, necessarily. But he said, rather than tying them, that it was just easier to remove them for him or you. I mean, it might, it may, it may have been him. I don't really know. I'm going to be honest though, I don't really know the difference. How

Scott Benner 7:13
about that? No side, like, there's no like, like, you're not going to grow a mustache now or something like that. Or like, no,

Alyssa 7:19
no, I still have my I still have my uterus, my ovaries, so, yeah, so I don't know.

Scott Benner 7:23
I don't know what all those things do. So that's why I'd ask questions, right? I understand how to get to them and everything, but after that, I'm a little lost. Okay, so you were diagnosed at three years old. I was Do you remember anything about growing up with type one?

Alyssa 7:39
Yeah, mostly my growing up with type one is very different than, like, what my now daughter is growing up with, because I was on shops for a very long time, and I didn't get a pump until I was 10 or 11 years old.

Scott Benner 7:51
Okay, and do you remember it as oppressive or just the thing you did?

Alyssa 7:56
It was tough. I mean, there was the insulin back then. Was also different, because I was diagnosed in 1997 so 97 so there was a lot of like, you have to eat this amount at this meal, you know, and snacks have to be this amount of carbs, not as much freedom for eating as I know today. You know, even on shots children have so definitely that that was definitely difficult. Was that regular in mph, or was, I'm gonna be honest, I'm not exactly sure remember, yeah, I don't, I don't remember I had to eat on

Scott Benner 8:24
a schedule, though. Yes, I did, yeah, it was probably that, okay, yeah. And then they moved you to a pump where they were probably, like, the insulins faster. Now we're gonna give you humologue, or something like that. Yes, yeah. So

Alyssa 8:34
I was on, I believe it was humologue, because I got a pump in 2005 it's very interesting. The way that I got my pump very different than today. My doctor had only prescribed one type of pump. So I'm going to be honest, up until a couple of years ago, like until I started doing my own research, I didn't even know about all the different types of pumps that were out there. I was put on a Medtronic pump, and they were like, That's what everybody in our practice gets. And so they actually had me and several other kids, we had a three day hospital stay. So in order to get the pump, I did have to stay in the hospital for three days where they kind of did, like, the initial pump training, like, taught my parents how to put the pump on me, like, how to actually do the dosing for it and calculate everything right.

Scott Benner 9:17
That's interesting. It was like, was, like, sleepover camp at the hospital, yeah,

Alyssa 9:23
yeah, it was. It is very interesting, especially, like, now, I mean, I'm in an OmniPod now, and, I mean, I did my own pump training, like, at home,

Scott Benner 9:33
I know, right? I used a YouTube video on the internet. It was fine, yeah,

Alyssa 9:36
yeah. I mean, essentially, I used a little manual and watched some of the videos on their website, and that was it, probably

Scott Benner 9:42
back then, though, there were a few people who could actually explain it to you, it was probably easier to bring patients to the information than vice versa. Yeah,

Alyssa 9:50
yeah. I have a feeling that's what it was. But like I said, we were all, I mean, all of us, there was, I think five or six of us that all were kind of doing the pump training and getting started on the pump together. There, and we all had the same pump,

Scott Benner 10:02
okay, yeah, because that's, that's the one they gave you, that's the one they gave us, right? And did that actually make your life? I mean, usually what people say is, I didn't have to eat on a schedule anymore, and that was a big deal. That

Alyssa 10:13
was the biggest difference, was not having to eat on a schedule, or, like, not having to eat if I didn't want to eat, which was nice,

Scott Benner 10:19
yeah. Can you talk about that a little bit at being a child and being told, I don't care if you're hungry or not you're eating right now?

Alyssa 10:27
I mean, it was definitely very difficult. It made me like as a child. I mean, not want to eat. I mean, the typical, you know, kid wanting control. It made me, you know, not interested in eating. There was probably some bribery on my parents part, because they needed to make sure they'd already given me the insulin they needed to make sure that I ate it, right? I know that was definitely probably hard for them too, especially now that I'm a parent of a type one. Yeah,

Scott Benner 10:50
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Alyssa 13:19
I'm not I think for both of them, it was definitely very difficult, you know, and even now, you know, we all have those moments, you know, where I feel like, Oh, I can't believe this. I'm, you know, super frustrated. Or, you know, something feels not fair. You know, my mom definitely is the one that I talk to, you know, because she, as a mom, also understands, yeah, that that feeling.

Scott Benner 13:39
How many kids did your mom have?

Alyssa 13:42
Just me,

Scott Benner 13:43
just you okay, oh, yeah. Then she just, probably, I'm trying to imagine 10 years from now, Arden telling me that her, her three year old, has diabetes, you know,

Alyssa 13:52
yeah, yeah. And definitely, I mean, when, so, when she was actually diagnosed, you know, the morning of, I mean, I called my mom in a panic because I also have a 12 year old. We knew we were going to take her to the hospital, obviously, but I needed somebody to come take my older daughter. Yeah, and definitely, that was a hard phone call to make. I mean, I'm going to be honest, I don't remember what I even said to her, because in that moment, I feel like we went into survival mode of we have to get to get to the hospital.

Scott Benner 14:20
How did you figure out that the hospital is necessary?

Alyssa 14:25
My daughter had been soaking through diapers, you know, overnight, because she, like I said, she was less than a year old, she'd been soaking through diapers overnight, like waking up frequently, which was unusual, because at that point, you know, she was almost a year old. She had not been waking up during the night frequently before that, but she started waking up super fussy during the night. You know, I figured maybe she's going through a growth spurt, you know, again, she's peeing through diapers. So we sized up in the diapers, thinking like, oh, maybe the diaper is too small. And, you know, it's just she's not able to hold everything. She was diagnosed on a Saturday that. Friday, I went to pick her up from my mom's house, because my parents watch her when she's not at preschool, and she was very thirsty, very fussy. You know, she had kind of been getting sick on and off, so I thought maybe she's getting sick again. I don't know. She came over to me and I hugged her, and I like smelled her breath. I know a lot of people say they smell a sweet smell. I didn't smell sweet smell. I almost smelled like acetone.

Scott Benner 15:23
Yeah, that's the other thing. Some people smell it as sweet, and some people smell it that way. It's just, it's the ketones, right? So, yes,

Alyssa 15:31
yeah. So I said to my mom, was like, Do you smell something on her breath? Like, do you, do you smell that? And she was like, No, I don't, I don't smell anything. And I had been worrying, obviously, as she would be, you know, getting thirsty and thirstier, I'd been worrying, and her one one year appointment was coming up, and I was going to bring it up to her doctor. But I didn't, I didn't truly think at that age, you know, that that would actually be possible,

Scott Benner 15:53
even though you were, even though you were three, yeah. I

Alyssa 15:57
mean, I figured if she was diagnosed, that maybe we would have more time before she was diagnosed. Maybe

Scott Benner 16:02
was that hopeful? Or,

Alyssa 16:05
I think, I think it was hopeful that that wouldn't be the case, I see, because I, I definitely had a feeling. And so we went home, you know, that night, she was still super fussy, and when she woke up in the morning, you know, she had peed through her diaper, and was, you know, her whole bed was wet, like I looked at her face and like, now, of course, looking back, I know they say Hindsight is 2020, like looking back when I looked at pictures of her face, like her eyes almost looked like sunken in. And I don't know how I didn't like see it in that moment, but my husband had left with our older daughter, because it was her, you know, almost her first birthday. We were doing a little smash cake at home. I had my husband go get the cake that I had ordered from the store while he was gone. You know, she was thirsty, so I gave her a cup of water. She downed the whole cup of water in 30 seconds, yeah. And she was just crying, like, very fussy. And I was like, this is very unusual. And so when he got home, I was like, I have to just take her blood. Like, I'm probably wrong. I'm probably being ridiculous, but I will just feel better if I just take it and make sure that I'm, you know, being ridiculous, right? And we took it, you know, we went into our room and took it, and it was over 500

Scott Benner 17:16
so then that's the moment you we knew. You call your mom and you're like, I've got to go to hospital, and all this is happening. But it happened to the onset was pretty quick, though, right as far as length of

Alyssa 17:26
time to say, Yeah, I mean it, it felt like it was, we had covid Back in December before she was diagnosed. And I feel like kind of that whole, like, 30 to 40 days after, was when we started seeing, like, diapers, being soaked through, getting fussier, waking up during the night. And then she did have days where she was like, super duper hungry, and then other days where she didn't want to do anything.

Scott Benner 17:51
Yeah, okay, well, that's about how it goes. So yeah. And then on eventful. Or did they do the thing where you have diabetes? So I don't have to teach you anything.

Alyssa 18:00
So her, when we got we live in a small town, I did not think about the fact that our small town does not actually have a children's hospital attached to the regular hospital. Yeah, I think because, again, when I saw that 500 number, like, I just panicked. And, you know, we went straight to our local hospital, you know, and I walked in and I said to the woman at the desk. I was like, I was like, you know, she asked why we're here, and I said, my daughter has diabetes. And they're like, Okay, she has diabetes. And I was like, no, no, she's going to be diagnosed with diabetes. I know she has diabetes. And they're like, how can you know that? And I was like, because I took her blood at home, and it was over 500 Yeah. And very quickly we were brought back, you know, to a triage room.

Scott Benner 18:39
We had the same exact confusion. What that that you went to the emergency we went in the ER, went up to the person's desk, and they said, Hey, why are you here? And we said, Our daughter has diabetes. And then they stare at you because you don't think about it like from the perspective of people who have diabetes who also end up in the emergency room. No. And then there's that pause where everybody's mind works for a second, and then one of us goes, Oh, no, sorry, we're diagnosing her right now with type one. Yes, yeah, it's exactly, it's exactly what happened to us. And

Alyssa 19:07
they kind of were like, Oh well, it could be something else. And I'm like, no, no, I have type one, and her blood sugar was over 500 it's not anything else. Yeah. It's like, I know. It's not Well,

Scott Benner 19:17
it's good because it saves time, and it also keeps them from tripping down other roads, which you hear people's stories all the time that that happens, you know,

Alyssa 19:25
especially of like, sickness, the flu, yeah, oh,

Scott Benner 19:29
it might be this. Let's check this first. And you're like, can you just check their blood sugar?

Alyssa 19:33
And that's the thing. So when we actually got back to the room, they're like, well, we need to check for all these other things. And I'm like, you can check for whatever you want, but this is, it's diabetes. Like, I know what it is. She's probably a DKA,

Scott Benner 19:44
yeah, yeah. Stop, stop looking around. It's right here in front of us. Yes. So we have protocols, yes. Well, have you been listening to the cold wind episodes? I have been Yes. Well, then you know what's going on. Yes,

Alyssa 19:57
I do. And, like, truly, I'm not surprised. Surprised about some of the things that I hear on those episodes. Unfortunately,

Scott Benner 20:03
yeah, me too.

Alyssa 20:04
I mean, like, I said, we went back and they were like, well, we have to test for all these other things too. And I was like, you can test for whatever you want, but it's diabetes, and she needs, like, she needs to be put She needs an IV. Like, we need to, we need to get moving. She's little. Let's

Scott Benner 20:19
go, yeah. I

Alyssa 20:20
mean, yeah. I mean, she was less than a year old. She was 20 pounds, right? Check

Scott Benner 20:24
her blood gasses, at least, before you start talking about other things. You know

Alyssa 20:27
the problem? The problem was in our local hospital, because they do not have a children's hospital. They really are not trained well with pediatrics, so they could not get an IV in her to get fluids in her or get anything started. Did they move her then she ended up taking a helicopter to our children's hospital that's about an hour away. The problem is, though, is like to get that started. I mean, we were in the local emergency room for probably about five hours by the time that they were actually able to get the crew to our hospital and back to the other

Scott Benner 21:02
hospital you live in, Mayberry or something. Let's go.

Alyssa 21:06
We live in a very small town in North Carolina. Gotcha

Scott Benner 21:08
pretty far from other things. Yeah, yeah. I

Alyssa 21:12
mean, we're, we're about a couple hours from some of the bigger cities I see. So unfortunately, you know, like I said, I if I like, now, knowing what I know now. Like, whenever we have to to go to the emergency room with any of our kids, we don't go to our local one. We go to the one with the Children's

Scott Benner 21:26
Hospital. Yeah, because they probably Alyssa, they probably had to sober up the crop duster pilot to get them into the helicopter, and that probably took hours to coffee and water, walking them around and

Alyssa 21:35
everything. My husband and I though we were like, we were, I mean, we were super frustrated, because we were like, listen, I understand it's very difficult to get an IV in her. She's really dehydrated, we know, but somebody has to be able to do this. Is there no one here that can do it? I mean, there were several people that tried. They tried seven times to get the IV in the arm. Oh, my

Scott Benner 21:53
God. I wonder, what else I wonder, what else they can't do? That's what I would be wondering, actually.

Alyssa 21:59
So the only people that were able to actually get the IV in, and this was the only IV that stayed in, like, throughout her whole hospital stay, even at the Children's Hospital, was the flight crew. When they got there, you know, they saw she didn't have any IV, and they were like, we can't take her up without any IV in her and so they were able to get one in her foot. That was the only place that they were able to actually

Scott Benner 22:19
keep one in. So not an undoable thing. Just you needed the right person to do it. Yes, yeah, gotcha, yeah. Well, how much was that helicopter ride? By the way,

Alyssa 22:28
that was a whole nother thing. So obviously, after everything was said and done, we were back at home. We had gotten a letter from insurance that they were that they didn't want to cover. Here we go. Wait. I was like, Oh, my God, what do you mean? You don't want to cover it. And I was like, I know my insurance does cover air ambulance. So in the end, we did. We paid it. We paid a small deductible. It wasn't terrible.

Scott Benner 22:53
It was $25,000 or anything like that. No, our poor our portion ended

Alyssa 22:57
up being about 200 What did they

Scott Benner 22:59
want from you? It was, I mean, it was, well over 2000 Oh, 2000 that's not bad. Well, I guess, though they did the crops at the same time they were going to the hospital. So it's probably like, like a ride share, almost, right? Yeah, it was,

Alyssa 23:10
I mean, I mean, what they what, like, the original bill, I guess that they were going to send us was 2000 I'm sure what insurance was willing to originally cover was probably more than that. But what our end was going to be was about 2000 we were like, No, I don't, I don't think that's because I actually had to look more into my insurance policy after that, like, as to how much is actually covered?

Scott Benner 23:30
Well, now I'm wondering if how they price these things, because they're people on here that were charged 10s of 1000s of dollars for life flights.

Alyssa 23:38
Yeah. I mean, like I said that it could have been more the bill that I had gotten finally got to you, yeah, yeah, by the time it got to me, would have been about 2000 gotcha. Oh, which is not what we ended up paying. Yeah. Oh, that's interesting. I don't know how much it was before insurance. I'm going to be honest, I

Scott Benner 23:54
don't remember a lot. I bet probably I like, how people are, like, it's all worth it. I'm like, oh, Jen has a lot of money

Alyssa 24:00
well, and so it was taking so long to get the the air ambulance that I was like, what if we just, like, take a regular ambulance? It's, it's an hour away, yeah, like, the time that we spent waiting here. And they were like, well, if something happens on the road? And I was like, but

Scott Benner 24:15
what if something happens here? You people are inept, but that's the thing. I'm like, what if something happens here? Nobody

Alyssa 24:20
can get an IV in her. Yeah,

Scott Benner 24:21
why don't we just take one of your inept nurses and put them in this the Winnebago, and we'll head over. Like, I mean, that's very interesting.

Alyssa 24:28
Yes, yes. And I'm like, I at this point, I'd almost prefer regular ambulance, because at least we'll get there, we're moving Yes. And there's nothing more irritating to me than staying stagnant. So I can't just sit here.

Scott Benner 24:39
That's really something okay. So we've get the diagnosis. We go the hospital. She's obviously okay because she's home, she's doing well, yes, I want to kind of fast forward a little bit to the juxtaposition between what you were accustomed to growing up, what you know now as an adult, and then what you learned you know subsequently from from this. So we. Know what it was like for you growing up a little bit. We know you got a pump around 10, but was a pump just a way not to use shots? Or were you being thoughtful about it? What were your a one C's through your 20s, and where are you now? As

Alyssa 25:13
a child, I was very frustrated with the shots, and I was done with them, so definitely, the pump was a way to not have to take shots anymore and to have more control over, like, what I could eat, what I did or didn't have to eat, that was kind of what it was for as a teenager and as a young adult, definitely like what I know now very different, because my control with a pump is so much better than it could have ever been with taking shots. Okay, I'm gonna be honest. I don't know what my ANCs were as a child. They were probably in the lower sevens as a child. But now, as an adult, especially now as an adult who's had several children, my ANCs are now sitting in the fives with a pump.

Scott Benner 25:53
Oh, wow, that's great. That's with OmniPod Yes, yeah. So

Alyssa 25:57
I was on omnipodronic Up until my daughter's diagnosis, I had actually inquired with my endocrinologist about an OmniPod, because, again, I didn't really know much about other pumps. I didn't know about other pump types because I'd been on a Medtronic, you know, for most of the time that I was on a pump. Yeah, I didn't mind the tubing, of course, because to me, it was still better than shots. I definitely was interested in OmniPod because they were tubeless. And so I inquired with my endocrinologist, and I ended up right before she was diagnosed, like, two weeks before maybe getting, like, the kit that comes with the PDM and, like, the one month sample, right? And of course, it came, and I was like, I don't know why this is coming. I didn't really, you know, I just thought about maybe looking into it. I don't know that I really want to switch. I don't know that I'm ready, mainly because I think I was worried about changing to something new, yeah. And right before, actually, the night before, two nights before she was diagnosed, that's when I put on the first OmniPod and, like, actually programmed it and tried it, wow. And yeah, and it was, I mean, it was great. I definitely loved having no tubes like that was that was the biggest positive of changing from Medtronic to OmniPod. Once my daughter was diagnosed, I ended up going back to my Medtronic for a short

Scott Benner 27:09
time because you knew it well, and you felt overwhelmed. No,

Alyssa 27:13
because when we were in the hospital, when she was diagnosed, we were when we were actually in the children's hospital, she was in the PICU to start, and then when we were moved to the pediatric floor the morning that we were going to get discharged. You know, we had been giving her shots, but her blood sugars were still, you know, in the three and four hundreds, even with shots, because she was so small and her doses were so small, but an insulin pen can't get doses as small as someone that tiny would need, right? So she would be eating a meal and not getting an insulin for it, because she wasn't eating enough carbs to technically get insulin for it. Yeah. And so that morning, I woke up and my parents, they live pretty close to us. I called my dad, and I was like, I need you to go to my house, and I need you to get my Medtronic supplies. I need you to get all the stuff. And he had helped me with the Medtronic pump as a child, so he knew exactly, you know, which supplies I'd need. And he's like, why do you want your pump and all that other stuff? And I was like, because I need to put the tubeless pump on Jillian. I need to, she needs to be on a pump. She can't be on shots. She's too small the doses. I can't make the doses small enough, and she won't eat enough.

Scott Benner 28:22
So you gave her the and they let you do that. That all was okay. So no, I was gonna say that doesn't sound right, but go ahead. No. So,

Alyssa 28:32
so that morning, you know, she was taking they were giving her her long acting in the morning when she first would get up right before breakfast or right after breakfast. And that morning, we woke up and I was like, You're not giving her her long acting. My dad, you know, is on his way. He's bringing me my tubed pump. I'm gonna take off this pump right now. We're gonna change the settings in the PDM and make it so that it's applicable for her. And they were like, well, you can do that when you go home. And I was like, No, I'm not doing it when we go home, and if you give her that long acting insulin, I can't do this until tomorrow, because that long acting insulin is supposed to act for 24 hours, yeah? And I was like, I'm not waiting until tomorrow. I'm not giving her shots for the rest of the day. Today, we're going to put a pump on her. That's not, you know, hospital that's not hospital policy, not protocol. And I said, I don't care.

Scott Benner 29:19
That's very good, and you got it done? Yeah. I mean,

Alyssa 29:22
they were definitely, there was a lot of pushback, because they were like, once, you know, once you do that, you know, none of the nurses will come near her. They will not touch anything with pump. I was like, that's fine. I don't want

Speaker 1 29:31
them to, oh, different, scary. Yes, different, yes. I

Alyssa 29:35
mean, that they were like, they're like, We don't, we don't, you know, the the staff here doesn't know how all the different pumps work. I was like, that's fine. I know how this works, yes. So

Scott Benner 29:44
I got Google. I'm all good, thanks. Like, no, don't get

Alyssa 29:47
me wrong. Like, she's tiny, and her doses obviously were much smaller than mine, right? So I needed help as far as making sure that I'm programming it correctly and making sure that I have the correct basal rates in but I. As far as, like, being able to give her insulin or being able to calculate carbs, like, that's nothing new for me. Yeah, so that's fine if they don't want to touch it. And we were going to be discharged that afternoon anyway. So I was like, No, and we waited, and, you know, my dad got there, and they were pushing back because, you know, we'd passed the mark from the day before, when she'd gotten her long acting insulin. So they were like, if we keep waiting, you know, her blood sugars are going to go up. I'm like, I understand that. We're going to put the pump on her. You are not giving her that shot. Yeah,

Scott Benner 30:30
nice, you dag out there. You put it on, and she's been wearing, she's been wearing one ever since, ever since. Yep, do you recall what her starting basal rates were?

Alyssa 30:39
I think we started off as just like, is either point 05 or point one per hour. We might have done alternating. She was on, like, an extremely small amount. I mean, she was already, she was also much smaller than than she was now. She was on an extremely small amount at the beginning. And we kind of just started her as basic of a level as possible to figure out where we needed to go from there. Yeah. And her endocrinologist, you know, is wonderful. She she was in the hospital that day, and I in the middle of this back and forth with you can't put a pump on her here. No, yes, I'm going to. I definitely yelled at her endocrinologist, and later apologized.

Scott Benner 31:14
Why'd you apologize?

Alyssa 31:17
Because I probably should not have yelled at someone, but in that moment, like I felt like I was not being listened to, so I felt I needed to yell,

Scott Benner 31:26
I hear you. I hear you. Well, nice of you to apologize, and they weren't listening to you either. Is that right? No,

Alyssa 31:31
but my daughter's endocrinologist, actually, she has her own children with diabetes, so she was like, you don't need to apologize to me. Like, I understand, I understand

Scott Benner 31:40
why? Oh, that's really lovely. Actually, that's, yeah,

Alyssa 31:43
I her endocrinologist. That's, she's been her endocrinologist since that day, and we love her. How do you know about me? So after my daughter was diagnosed, I did join a couple of groups on Facebook, of, you know, moms and dads of kids with type one, and I had been seeing the juicebox podcast to come up a bunch of times. I saw, you know, tagged a couple of times. I think I'd posted about my daughter once or twice, and somebody had put that recommendation in there. I ended up taking some time off of work after she was diagnosed to kind of get a hold of everything that was going on in our lives. And while I was home with her, I ended up starting to listen to the podcast when we were in the hospital. And obviously the days after, you know, her numbers were very up and down, definitely running a lot higher than even I was comfortable with as a type one. And, you know, they kind of said, like, Oh, she'll, you know, she'll run higher. It's okay if she runs, you know, at 200 or above 200 having, you know, been pregnant with her, you know, a year before. Obviously, I hear 200 and I'm like, OmniPod, that's so high, right? What do you mean? It's okay if she runs, you know, her target was 250 I'm like, What do you mean, her Target's 250 that's so high. How can that be? I was definitely afraid because of, you know, the education, of course, that we still, we still did get some education in the hospital. I was, you know, afraid of giving her too much insulin, because I did not want her to go low or go too low. And so I started listening to some of the very earlier episodes, you know, both with insulin, things like that. And I started listening to some of the things that you were saying. And I was like, well, this, this makes sense. This. Why would I want her to run higher? I wouldn't want that for myself. So just because she's a child, it doesn't mean that she should be running high. Did they ever

Scott Benner 33:28
tell you why they set the targets that high? No, I

Alyssa 33:32
have a feeling, personally that it has to do with you know, if you do have somebody who does not have any background knowledge, you know, I understand in the beginning, maybe it's safer to run higher so that you're not overdosing on insulin. As someone who does have background knowledge on how insulin works, I definitely felt it was way too high.

Scott Benner 33:52
Was there any honeymoon for her at all? Slightly like

Alyssa 33:56
she definitely needed a lot less insulin during the first like six months to a year, okay?

Scott Benner 34:01
But no, no. Like, wild swings. Like, need a bunch. Don't need it. Like, didn't go back and forth. Oh, that's nice, actually. No,

Alyssa 34:08
no. And that's the thing. Like, I know that they did, they did talk to us in the hospital. They're like, well, she could go through a honeymoon, and it is kind of nice when she does, because then she won't need as much insulin. And I'm like, I don't feel that's nice, because then I'm going to be giving her, you know, a normal amount of insulin, or what I think is a normal amount, normal amount of insulin, if she's still producing some insulin. Yeah, can be way too much. There's

Scott Benner 34:26
no indicator light on your forehead that says not so much today. Yeah, no.

Alyssa 34:30
So, I mean, I know that a honeymoon period, I guess, can be good, because you don't have to take as much insulin, but you don't know it until after you've already given it, till

Scott Benner 34:39
you've taken too much insulin. Yes, and you're trying to get a you're trying to get a two year old to eat,

Alyssa 34:45
yes, and honestly, like, that was our, that's has, I mean, even, even now, has been our biggest challenge is, like, making sure that she eats to cover what we've already given her. Yeah,

Scott Benner 34:55
did you breastfeed? I did not. Okay, so that wasn't an issue with it. Yeah. Know,

Alyssa 35:00
but she at the time, I mean, she was still, like I said, it was three days before her first birthday, she was still drinking from a bottle, and she still had formula. Yeah, calculating those carbs are kind of complicated, yeah,

Scott Benner 35:09
I know they when people talk about trying to calculate for breast milk, it sounds like they're going crazy while they're talking about it. And, you know, yeah, no way to know how much. Not imagine,

Alyssa 35:17
I cannot imagine trying to calculate the carbs because it was hard enough on formula where, you know, we looked up the nutrition facts, but the way formula reacted in her body, and the way it was absorbed in the body was not necessarily even the same as regular milk. Yeah, that interesting, yeah. I mean, and we did see a difference when we switched, because obviously, soon after she turned one, we started switching to whole milk. But we, and we did see a difference. But the formula, I mean, the the way it would spike her blood sugar, was kind of crazy, right?

Scott Benner 35:45
Yeah, oh, I hear you, but you made it. Do you feel like you made it through that? Do you feel like that part's over now? Yeah?

Alyssa 35:51
I mean, I definitely feel like, you know, those first honestly, like the first six months probably were the hardest. Okay, even being on a pump, being on a pump definitely made it easier. Because, you know, it was much easier to make changes, you know, to see things as they were happening. Yeah, definitely those first six months were very difficult because, you know, I mean, she was so little, she didn't necessarily understand the pump changes, taking off the pump, she, you know,

Speaker 1 36:18
getting poked all the time, right? You wear a CGM or no? Yes, I do. And did you put one on her?

Alyssa 36:24
Yes. So when she was a helicopter lifted to the Children's Hospital, we were not allowed to go with her. We had to drive separately, because, I guess it's insurance on their part, they had two nurses and her in and the person who was uh, right, driving the helicopter, flying the helicopter, sorry that we're in the actual helicopter with her, and we had to drive, you know, the hour, to the Children's Hospital. And while we were on the drive, on the way up there, I went online and started filling out the forms on OmniPods website, as well as dexcom's website to get the ball rolling with being able to get those devices for

Scott Benner 37:01
her, that's different when you understand what you're talking about, huh? Yeah, I

Alyssa 37:05
mean, and of course, you know, I saw on there, you know, it says approved for ages two and up. And I was like, well, she's not even one. Like, I don't even know if they're gonna let me do this, right, but, you know. And again, in that moment, I looked at my husband, and I was like, if they say that, you know, she can't have it because she's not two, and she has to be on shots for the next year. I'll just put my pump on her, and

Scott Benner 37:26
I'll take shots. And you're gonna do that, and you're gonna do the shots, of course, yeah?

Alyssa 37:30
I mean, I definitely would, yeah, and I don't like shots, but I would rather myself take shots than my child.

Scott Benner 37:35
Yeah, that's lovely, too. I think that people don't understand that, you know, it says, you know, for two and above, but that just means the FDA tested it for two and above, and then your doctor, your doctor, just writes it off label. And mostly that's okay. And yeah. And

Alyssa 37:53
so when we were in the PICU The following morning, one of the endocrinologists had come in, and she had talked to us, you know, about if we wanted to try a pump. And I was like, I already filled out the information on OmniPod. And she was like, Oh, well, you know, we were thinking maybe one of the tubed pumps instead, because those can get, you know, even smaller doses. And I was like, she's a year old. I really don't want her to have tubes. She's an active one year old. I don't a tube really would not be productive for her. She would end up pulling it out or ripping it out accidentally, rolling over. We

Scott Benner 38:21
were thinking that. She's like, Oh, was that? Is that what you were thinking? Yeah, here's what I was thinking in the car on the way over here. Already took care

Alyssa 38:28
of it. Thank you. Though, yes, she was like, she was shocked that we had already, like, filled out everything. I was just like, I didn't have a doctor's name to put on. I was like, obviously, like, I put my information on there. I didn't have a doctor's name, you know, at the time, because when we were traveling to the Children's Hospital, I had no idea who the doctors were. But doctors were, but I was like, you know, as soon as I get the information from them, I'll forward it to you, because I want this prescription put in as soon as possible. Wow. And it happened, huh? It did. I mean, she ended up getting a Dexcom because that was a Saturday. I think we had a Dexcom on her by the following, like, Thursday or Friday, like, we got the Dexcom pretty quickly. It's awesome, actually, by the end of that week. Yeah,

Scott Benner 39:02
now I'm excited when people find technology and information early on, because it just, it's such makes a big difference. Yeah, it's an easier path, and it's a healthier path, and really wonderful. Well,

Alyssa 39:12
that's the thing we knew. I mean, her ANC at diagnosis was a 9.1 which compared to some other stories that I hear like it's not as high as I guess it could have been, right? Yeah, it sounds like you got it pretty quickly, yeah? But I think she was, I mean, she wasn't DKA, so not, yeah, maybe because she was so little, it happened quickly. It did, yeah, I think so. And, you know, we did get her ANC down pretty quickly with

Scott Benner 39:38
the pump. It's beautiful. What did you learn for your or maybe you didn't, but like, has her diagnosis changed? Anything about how you take care of yourself?

Alyssa 39:47
I feel like it reminds me that even when I am not pregnant, I need to make sure that I am taking care of myself as well. Obviously, you know, before I got pregnant with her and then. While I was pregnant with her, and then while I was pregnant with my son, definitely had, like the best control, because I knew how important it was. But even on, you know, in between having children, or even now at postpartum, like definitely a priority to make sure that my numbers stay in range as well.

Scott Benner 40:16
I'm doing a little math here you were young when you had your first right? So

Alyssa 40:20
my first daughter is actually adopted. Oh, she is biologically my husband's daughter, and I adopted her in 2020, Oh,

Scott Benner 40:27
I see so you, you've given birth to a three year old and a six month old. Yes, 12 year old, six week, six week old. Oh, six week Geez. Yeah, my brain doesn't work in those small numbers like that. All I know is I see a 12, a three and a six written in front of me in descending order, and my brain's like, why is the six not above the three? So she's not yours? Biologically, biologically.

Alyssa 40:49
No, no. So no. So my husband and I, when we started dating, she was just under two years old. And so once we were able to we got the adoption process started. Unfortunately, covid pushed adoption process back a little bit. But my

Scott Benner 41:03
point is, is that you so you live for 24 years before being pregnant with diabetes? Yes, and you don't remember when you were younger, that's fine, but what was your management like, and where were your numbers? Young Adult? Yeah, young adult and etc.

Alyssa 41:19
So definitely, when I was in college, I mean, I did not pay attention to diabetes the way that I pay attention to it now, I definitely did not make it a priority. Even when I first got married to my husband, did not make it a huge priority. I don't, I don't really have a reason why, other than it had always been a part of me, and I was just kind of like, oh, this is another thing, another thing we have to deal with, but definitely, you know, once we got married, and once, especially once we started talking about possibly having children in the next few years, that's when I was like, Okay, we really need, you know, I really need to have better control. I was not on a CGM for a long time, and once I got on a CGM, that kind of made the huge difference for me, in my control, what

Scott Benner 42:01
what did, what changes? So, yes, you have a CGM and that, and that helps. But like, I mean more like, daily steps, attitude, like, what kind of stuff shifts there when you go from, I'm just gonna do this, because it's the thing I do to I need to do it really well.

Alyssa 42:18
I definitely think the conversation about wanting to have kids, definitely the way that I looked at numbers, the way that I looked at food, and started doing things like pre bolusing, I had not really done that much as a young adult, but once I knew, you know, that I wanted to have children, and I knew the type of control that had to that I had to have in order to have children, that's when I realized, like, okay, even if I don't really want a CGM because I don't want another device on my body, I have to have that device on my body because I have no idea what's going on in between meals. I wasn't really taking my blood in between meals. Yeah?

Scott Benner 42:51
So you understand that it's necessary to be pregnant? Did you also understand it was necessary for your good health? But just ignored that part of it kind

Alyssa 43:00
of, yeah, and especially as a young adult, I didn't really think too far into how's this going to look 30 years from now for me.

Scott Benner 43:09
So knowing that that was your reaction, is that something you're already thinking about for the baby? What do you mean for your three year old? Do you like, wonder if that's going to be her attitude when she gets older? And like, how do you work with that? I

Alyssa 43:21
do sometimes, and I definitely we are. My husband and I both try to keep positivity, as far as you know, especially when she's not interested. She doesn't want her blood sugar taken, or she doesn't want to do a pump site change things like that. We talk a lot about being healthy, not necessarily like, I want her to know the way we're trying to keep her healthy now is something that I want her to carry into, you know, when she's a teenager, young adulthood, for her overall health.

Scott Benner 43:50
Yeah, I think that's really valuable, actually, just to keep that message up, this is what we do because this is what we want. This is why we want this. Yes, this is what we do, you know, and then just over and over again until, hopefully it becomes part of her.

Alyssa 44:07
I hope so. I mean, she definitely, I mean, even at three, she definitely is not happy about pump site changes and Dexcom changes, but we've she started becoming more involved in them, like when I change my pump, I have her help me when it's time for her to take her old pump off, because that's the part that she doesn't like. We help. We have her help, like, pull it off and take the patch off with her. Yeah, that's

Scott Benner 44:28
got me. It's all you can do. It's very slow. It's a very, very slow process. So yeah, and will she, well, how about you? Are you using an algorithm?

Alyssa 44:37
So I, she and I are both now on OmniPod five. I have not been using the algorithm, mainly because while I was pregnant, I it didn't get me in as tight of control as I needed to be, right? And so being postpartum now, I'm also not using auto mode, just because postpartum is definitely very difficult on blood sugars. Yeah, I was taking a lot of insights. One by the end of my pregnancy, and so using auto mode until I get my settings my manual settings correct to me does not feel very beneficial.

Scott Benner 45:08
So are you are you very sensitive right now, or do you need more

Alyssa 45:13
so right after I gave birth to my son, definitely very sensitive those first like two to three weeks now, I'm seeing over the last two weeks or so that I'm needing more insulin here and there, like for food,

Scott Benner 45:26
heading back to where you were before pregnancy. Yes, okay, all right. Well, I say, do you imagine you'll go into auto mode?

Alyssa 45:33
I would, yeah, I definitely would like to, because my daughter is in auto mode most of the time, and it really does work very well for her, so I know eventually that I would like to I just like I said, I want to get those settings correct before I switch to that reasonably

Scott Benner 45:47
stable too. Yes, back to normal, I guess, yes. And but for her, you like it a lot.

Alyssa 45:53
We love it. We like I said, we started on the dash back when she was diagnosed, because the five wasn't out yet. Yeah, and I got the five the summer after she was diagnosed. I was 2022 and I started in auto mode. I really liked auto mode back when I was using it, and I knew that I really wanted her, but I believe it was that she wasn't using enough insulin, maybe when it first came out, that she wasn't able to get it right away by the time we got to, like, late 2022 or any little bit of honeymoon that we had, was kind of on the downward trend. So she was using more insulin, and we were able to get the five for her. And honestly, the five made the biggest difference in getting her ANC down and, like, her time and range greater during the day. Excellent.

Scott Benner 46:37
Oh, I'm glad. The reason I asked, and because the way we're talking about is, I just got back from visiting Arden on her spring break, and we were with her for a week, actually, like probably a solid seven days, and she's doing so well, you know, but there's just no doubt that the combination of an insulin pump, a CGM and an algorithm is a big part of why she's doing. Well, yes, you know, because of every time that you do that thing where you guess carbs and don't get them quite right, or you get, you know, really active, and don't think about it like all the stuff that happens that, you know, if you stop, and if you're listening to the Pro Tip series, you're like, Well, if you're going to exercise an hour and a half before you turn your basal down, like, like that. You're not really doing those things. Like, that's how you do it, but you're not doing it once you go, you know when you're living it. And the algorithm just, it just saves you over and over again. You know it just, it's constantly working on your behalf and trying so hard to keep you from being high and from being low. Arden's gonna come through college having a slightly higher a, 1c while she's there than she would at home. But, I mean, she's gonna have a low six A, 1c eating college, you know, eating at college, college food, yeah, doing her thing there. You know, cooking for herself sometimes, but then for three days in a row, just like, you know, during her finals. I think she DoorDash during her finals, like five days in a row, and, you know, like, that stuff's all happening, and she's gonna come out of college with like, a six two, probably this year. I think that her great, yeah, her first year as a freshman, she swung a six four while she was by herself. And then she comes home and it goes down just when, you know the food gets better and you're get some stability to your day, right? And then this time she went back, and it's a little lower. In fairness, she's taking a GLP medication now too. So she's using, uh, less insulin. Her hunger is not exactly the same because the GLP, you know? So there are other impactors, but at the same time, who cares? Like, like, it's helping her, and she's helping her. Yeah, it's amazing. And your kids, you know, she's three, so 15 years from now, I'm hoping it, you know, the OmniPod five algorithm, or whatever else exists, is better and better. And you know, hopefully the sensing technology is better and allows the algorithms to be more aggressive. And, you know, that's what we're hoping for, because that's what I hope to Yeah, you know, of course, because that part, like I'm talking to you, you're a reasonable person. Do you know what I mean? You're intelligent and thoughtful and reasonable. And when I say to you, did you take good care of yourself? You went,

Alyssa 49:19
I mean, mostly. And that's the thing is, like, I did not think about, like, the overall impact it would have later in life, right? Like, thankfully. I mean, I've had diabetes for 27 years. I've not had any complications, and I'm very thankful for that. But I'm hoping that, you know, my daughter, who's had an even lower a 1c than I ever had, you know as a young child, I'm hoping that she also, you know, gets to 30 years, 40 years, 50 years of diabetes, and does not have any complications either. Yeah, enjoys

Scott Benner 49:48
benefits of that, of that management style, exactly, yeah. And hopefully, who knows? I mean, there's no way to know what comes in the future, right, but yeah, you know, so we don't use. Think about things as quickly as they're happening, you know, which is, is, you know why you hear people say, like, oh, I don't want an older doctor because he's doing it, like, 15 years ago or that kind of thing. But, you know, you're regular and mph growing up. Then you go to Humalog and Lantis, probably, I'm guessing, right? And then, you know, on a pump, just because it avoids shots, picks a guy on a podcast to be like, hey, you know, if you know, if you thought about, like, timing your insulin, like this, and doing these things and like, so all that takes a lot of time, but now things are speeding up so quickly, like, right? Like, with AI, I was listening to this guy be interviewed the other day, and forget, what was he talking about? Energy, maybe, like, like, electricity and like, like, he's like, he's like, in 10 years, we're going to be powered by electricity, like, by the sun and by solar and, like, batteries and, and I'm like, how so fast? Like, that was my question when he was in the interview. And I don't know if this will really happen or not. Alyssa, that's not the point. The point is, is that he's like, AI, is that's the point. And he started talking about computers, training computers, and how much quick, more quickly, that will make us get to something. And then, you know, almost as a throwaway in the conversation, he said, and that's gonna happen in medicine too. Yeah,

Alyssa 51:11
I wouldn't be surprised. Oh, I'm

Scott Benner 51:13
like, Oh, I hear it. Like, okay, so right now, you come out of grad school with like, this harebrained idea about how a cell works, and you're going to dedicate your entire life to figuring that out. Now, you're just going to point the AI at it, and it's going to run simulations, and they're going to crash, and it's going to weed them down, and you're going to take a lifetime's worth of work and squeeze it into, you know, I don't know how long a year a weekend, like, I don't know how quickly it's going to work like, what is going to happen to health care in the next decade, and then how will that translate to diabetes? I mean, I hope, I hope so. I hope it does super exciting. Actually. It's definitely, I

Alyssa 51:52
mean, the improvements that I've seen you know, since I was a child, definitely right. I can only imagine

Scott Benner 51:59
how lovely would it be a list if none of you had type one diabetes when the machines took over and killed us all? Wouldn't that be

nice? At least I don't have type one and that thing steps on your head. I'm just going, I'm going over Terminator. I don't know exactly like how it'll go down, but, you know, I honestly, I think it's, I think it's amazing. Like, you know, I've brought it up on the podcast a couple of times, but I read this news story once about how Tesla the car people like, they're teaching their cars to drive, right? And they couldn't find computers that were fast enough to crunch all the data that they were getting back from the cars, so they built their own supercomputer to do it. And I was like, right on. I don't know if I even care about that or not, but let's go. You know what I mean? Like, they were like, these computers we have right now are not fast enough to take the data and do this with it. We'll actually design a faster computer. And I was like, Yes, I want more of that. I want more people thinking that way. You know what I mean. So that will translate to healthcare. It'll translate to everything. Because, you know, then suddenly a research hospital will be using computers. Like, there could be a world where none of us work one day and it's okay, like, where you get up and just like, feed your mind and your soul, and, you know, you live your life because things are taking care of things. And I might like that. I have to tell you, I had a week off, and it was pretty goddamn relaxing. So yeah,

Alyssa 53:28
and you don't take a lot of weeks off, do you? I

Scott Benner 53:30
really don't. I jumped back on with Jenny yesterday. We recorded an ask Scott and Jenny episode, like, the day after I got home, and I said to her, I'm like, well, let's see if I remember anything about diabetes. Like, because, you know, I I was sleeping a little later in the morning, getting up, walking around. It was warm outside. I did have a bit of a problem, Melissa, where I don't want to say what happened, but I had some money stolen out of my hotel room. And, gosh, that was unpleasant, but I let that go. I was like, I'm not I don't care. Like, I'm so relaxed, just gonna let this go. We actually had a really movie like moment this week, my wife accepted another position at a different company, and we were sitting at a rooftop restaurant in a hotel on like a warm southern day when my wife got a phone call and got this job offer and she accepted it, and I was like, this is the most cosmopolitan thing that has ever happened to us, because if we weren't here, this would have happened in our kitchen. So but instead, we're like, you know, sitting at a glass table with these big, heavy chairs, and, you know, there's an umbrella and it's sunny, and my wife's on the phone, like, hello, and I'm like, oh my god, this is like, like Anne Hathaway should be in this scene. Like, you know,

Alyssa 54:49
like a scene out of the movie, I

Scott Benner 54:50
swear to you. I was like, this is makes it so much more exciting, like this. Anyway, congratulations to my wife, who will have accepted this job six months. To go when you hear this amazing, yeah, she's very excited. Yeah, I think that things move the way they moved. Like, you can see it in our lifetime, right? Like, like, I can see it in your story. Or when I talk to somebody who's 50 years with diabetes, talk to Jenny, like, you know, and you can see the the pros and the cons. I don't know what good or bad it's going to come of all this, right? Like, like, using Jenny as an example, I think Jenny's a very healthy eater because, A, I think that's how her parents were inclined, like, right? But B, because she got put on that insulin where she needed to eat at every certain time, so she's, she's a very, like, you know, a regimented eater because of that. Now, I've also talked to people who will be like, I have an eating disorder because they put me on this regimented plan and by like, so it's a lot of personality too, right? Like, a lot of this stuff definitely is, yeah, a lot of the stuff, you can't really do anything about that

Alyssa 55:54
side of it, you know, the eating disorders and stuff like, definitely a reason that we are very careful about how we frame eating food and what needs to be eaten versus what you want to eat. Yeah, with our with all of our children, really? I mean, no, of course, you don't, not just, not just Jillian, but all of our kids.

Scott Benner 56:13
You don't know which person they are when they're that little like you know, so that there's a lot of care that goes into that. The way you disseminate information and talk about things, the words you use, that kind of stuff, yeah,

Alyssa 56:24
I mean, and the thing there, I can't remember which episode it was, but I know there was one episode when you talked about pre bolusing for Arden, and you talked about giving, you know, giving a certain amount of insulin that, you know, if she didn't eat anything, anything, you would give her juice box. That's definitely the mentality that my husband and I have, you know, we pre bolus, you know only 10 to 15 carbs which she may eat, that she may eat more than that, right? But at her age, like, we're not exactly sure. There are some days where she sits down and she wants to eat everything on the plate, and there are other days where she's like, I

Scott Benner 56:54
don't want to eat this. I'm

Alyssa 56:54
going to go play. Yeah. But as long as, I mean, as long as we're within 10 to 15 carbs of pre bolus, we know we can cover it with the juice, rather than forcing her to eat something she doesn't want to eat. Isn't

Scott Benner 57:03
it awesome to think that a little girl in North Carolina is doing a thing that I thought of 15 years ago in a gymnasium in New Jersey? Yeah?

Alyssa 57:12
I mean, yeah, because it has made the biggest difference for

Scott Benner 57:16
her. Yeah, I'm glad. I'm going to be mushy this week making the podcast, because I didn't talk to anybody last week, so all my, all my emotional stuff, didn't get to come out. So like, I'm gonna, I'm gonna have that going on. I'll probably cry in the next 48 hours, making this podcast for freaking sure, because I spent the last week defending myself against my family, because also the loss of that money was probably my fault. Listen, I took a, I don't know how you would put it down there, but I took a lot of hot poker to the ass over that for my family. They're like, Oh, look what you did. And I'm like, Yeah, okay, I got it, yep, just to hear you say that, like, this little thing, like, you know, this thing you heard on a podcast that I said, even I don't know, God, Arden's, I was gonna say it was a very old episode. I don't know which Arden it was. Arden's 20 in a couple of months. I did this when she was like, I don't know, six or seven, so maybe 13 years ago. And then I talked about on the podcast, like, 10 years ago. And here we are, you know, present day. And you're like, oh, what I do is, and I'm like, Oh, my God, that worked for you. That's so touching. You don't know how fulfilling that is to hear. You know, yeah,

Alyssa 58:25
I mean, yes, I can imagine. Because, like I said, it made, it makes a huge difference. Rather than trying to force her to eat food, you know, that she's, she's not hungry for she

Scott Benner 58:35
could be one of those people who, if that happened, ends up having an adversarial relationship with food one day.

Alyssa 58:41
And that's definitely something we think about a lot, and try very hard to make sure that we are not creating

Scott Benner 58:48
Yeah. I think it's important, you know? And it's funny too, because that's not why I did it, right? Like, the reason I did it the first time was because I wanted Arden to play basketball without her blood sugar getting too high, yep. And it took people coming on the podcast who had eating disorders to talk about why that was so important to them, you know, like, like, why food and talk the way it's spoken about? And you know that need to eat, or, like, I don't eat and when I'm not hungry, and and how that can, like, reshape some people's minds. And, yeah, like, I had to learn enough about that to speak about it the way I do now, too. And it's been, like, a really wonderful process. I'm starting to get to that point in my life, Alyssa, you're not going to know this, because you're really young still, where I start feeling like, oh, this is, like, the last third of my life, yeah. And I'm just starting to understand everything, yeah.

Alyssa 59:37
I mean, like, I said, it definitely made a huge difference for us.

Scott Benner 59:41
Yeah, I'm glad. I'm very glad, and I appreciate you sharing that with me. Is there anything we haven't talked about that we should

Alyssa 59:47
have? I don't think so. I think we kind of covered everything that I'd want to talk about. Mainly, you know, the biggest reason that I wanted to come talk to you was because I see so many, you know, even on the juicebox group, sometimes. And of parents who, you know doctors are telling them, No, you can't do that, or that's not how we do it here, then obviously that was something that we were told too. But I just think it's really important, whether it's for you or for your child, that you are advocating for what you think is best for yourself or for them.

Scott Benner 1:00:17
The only reason Arden is wearing an OmniPod is because when somebody said something to me, I was like, No, I'm gonna do this, you know, I appreciate your input, but I here's how I see it, here's

Alyssa 1:00:28
how we're gonna do it, yeah? So, yeah, I mean, and that's, and that's how she ended up on a pump, you know, in the hospital, right?

Scott Benner 1:00:34
No, of course. And you even filling out information, you know, on the car, right? Yeah, that's fantastic. I love that idea. Your husband was probably like, all right,

Alyssa 1:00:44
no, I mean, my husband definitely. He knew about diabetes, obviously, because I had already had diabetes for so long, he knew about it, but he, he never, you know. He didn't give me insulin. He did not fully understand the carp calculating things like that. So when we got the, you know, the little bit of education in the hospital, which was a small amount, it was more so for him, because that doing it for her was definitely a new experience for him.

Scott Benner 1:01:13
Is he very involved in it? Now, yes, he

Alyssa 1:01:15
is. When he and I are together, we definitely still talk things out like, okay, her numbers, you know, rising. You know, should I give her an extra point two? What do you think? Or, you know, we didn't, we didn't pre bowl us as well as we wanted to. So her number is going to rise. Should we maybe give a little extra? How much do you think? But when, like, when I'm not there, like when my husband takes her to the grocery store or is picking her up, you know, at the end of the workday, he is making the same decisions that I would make for myself or for her,

Scott Benner 1:01:42
that's great. Oh, that's wonderful. And yeah, and would you do you allow him to know more about your diabetes now? Or is that still about definitely,

Alyssa 1:01:52
so when I was pregnant with her, he definitely learned more, mainly because I had to have such tight control while I was pregnant with her, and then obviously, once she was diagnosed, he learned more about the way that I manage my own diabetes see

Scott Benner 1:02:08
so if he sees you not taking good care of yourself, does he say something? Yes, he

Alyssa 1:02:14
does. He actually, he's the only person who follows my Dexcom. And how do you feel about that. There are some days where I'm like, Yes, like, I know, I know, I know, I know. You're You're right. I need to, you know, my numbers, my numbers rising. I need to take some insulin, or, Oh, I'm low. I need to have a juice. And there are other times where I'm like, I already gave the insulin. You don't need

Scott Benner 1:02:33
to say it to me. Leave me alone. Yes, yes.

Alyssa 1:02:37
He's the only, he's the only one who follows my Dexcom,

Scott Benner 1:02:40
I'm telling you right now, all week long, Arden, like we were together, like we stayed together. I mean, six of the, yes, all six nights in, like, in two different hotels, because we kind of traveled around a little bit, absolutely fine. She, you know, there were times where she'd be like, Hey, here's my phone. Might do this. I don't want to do it this time, but it's so cool to watch you, you know, like the idea was, I want to take care of lunch, and I, you know, I'm very careful about how we talk about it. Like, as she gets older, obviously, I'm not upper ass about it and everything like that. Yep, you know, she was very open to speaking about it, because I was like, alright, and listen, this is a good opportunity for us to be together, to make some adjustments to your settings and stuff like that. As we were doing all that. She's all good with it. And then we were gone for 48 hours, and we were on the phone, and I said, Hey, did you have trouble shooting the GLP? Because she's not a big fan of the needles. She goes, leave me alone. And I'm like, and I'm like, Well, what happened? We were having such a good rapport last week. I was like, I was like, I was like, No, I'm just, I know you don't like the needles, you know. So I was wondering if it went okay. She goes. You're trying to make sure that I took it. And I have to be honest with you, unless that is what I was doing. So I'm gonna have to get even more stealthy. I guess in the future. It was interesting how she was okay with it when we were together and everything felt a little more like parent child. It feels like she's younger when we're together, like that, and then the minute we're gone and she's living by herself, she's like, I don't need your help, old person, yeah. And I was like, Oh, I got it. It's so cool. But anyway, we're I'll tell you what. I'll tell you this the first time I'll say this in the podcast while we were down there, she has some pretty significant problems with her dorm room, like the actual physical room, like humidity in it, and temperature and mold, and, you know, it doesn't surprise me in the self ants and roaches and mouse, okay, that kind of stuff. So thanks. So she's like, I'm getting an apartment. And I'm like, okay, so you know, you take basically the amount of money you're spending on room and board at the school, and you go, Okay, well, that's the amount of money we have to get you into a different place, you know? And so we looked around, looked around, and actually found a studio where she wanted to have a roommate to get a bigger place, but it's hard to find somebody who can commit to like both years and everything like that. And so we ended up landing on a studio. So Arden's gonna be living by herself, like, completely by herself, starting, you know, in September. Wow, yeah. So it's scary at the same time, like, you know, like, all right, well, it's gonna be what it's gonna be. So although during the tour, my wife asked the realtor, person from the apartment building. She goes, How do emergency services get into the building after hours? It's not a bad question to ask. Yeah. The woman looked at her like, what do you plan on having happen? She's like, they have their own key, so if you were to call 911, from your apartment, they can come through all the security and go right to your apartment. And Kelly's like, Okay, thanks. And she's like, okay, that's fine. And then there was this weird pause, and I said, Arden's just a big heroin fiend, and we like to be able to, you know, she nods out sometimes. And Arden's like, what are we doing? I was like, Oh, we're having fun. And so the girl like, you know, they don't hear you right away, because no one, there's no person on the planet who says to an apartment realtor, I have a heroin problem. So, like, that's not a thing they're accustomed to hearing. And so she react, well, I watched her brain process it, and then she turned back to me and went, what was that? And I was, like, I was just kidding. She's type one diabetes, and we just want to make sure, like, if there's a problem, like, she can get, like, the emergency service kind of access. And she goes, okay. And I was like, Oh my God, that's that old joke where, like, people come up to you and go, I don't know. I guess who's Guess who's pregnant or something like that. Yeah. It's like, not me. And you're like, oh yeah. So I just made, I made it worse, and then I made it better. And she was like, oh, diabetes, that sounds way better than heroin addiction. I was like, yeah, right, it's gonna be fine anyway. That's one

Alyssa 1:06:46
of the biggest benefits. Though, if you follow her Dexcom, yeah, you'll be able to see, I mean, if there is a problem and she's not answering,

Scott Benner 1:06:53
I mean, it's 100% that's, I don't know how, I mean, I guess we do know how other people do it, right? Like they keep their blood sugars higher, that's just, yeah, what they end up

Alyssa 1:07:04
doing. And that's the thing. When if her CGM like, when it's warming up that two hours, I'm like, Oh my God, this feels like it's forever. I don't this. This is taking forever. I just want to see what the number is like.

Scott Benner 1:07:16
How did my parents, all those years, they weren't thinking about it. It was a different thing. How

Alyssa 1:07:20
many? I mean, they woke up a lot to take my blood. But I was like, I cannot imagine.

Unknown Speaker 1:07:25
Yeah, no,

Scott Benner 1:07:26
I know. Make you crazy. Well, the g7 now is 30 minute warm up.

Alyssa 1:07:30
I know, I know. And we want the g7 so she's, yeah, she's using auto mode until it hooks up with the algorithm, or we're

Scott Benner 1:07:39
not switching. I gotta be honest. I think it's gonna be pretty soon. So, you know, I

Alyssa 1:07:43
really hope so. Yeah,

Scott Benner 1:07:44
but I mean, by the time it to be perfectly honest, by the time this comes out, I would expect that OmniPod five works with Dexcom g7

Alyssa 1:07:51
I really hope so. I mean, my mother in law has a g7 and I saw how small it was, I was like, Oh, that would be so great. Because, I mean, my daughter, my three year old, so small.

Scott Benner 1:08:00
Yeah. No, I understand. I mean they, and they try so hard to make that stuff tiny. I'll never forget I was working with OmniPod, like writing for their blog, like years ago, and Arden had the original OmniPod. So if you can imagine how big OmniPod dash or five is right now, like the other, the original Eros pod much bigger. Well, the real it was bigger and but it was still such a like an accomplishment, like this, insulin and the batteries and all the technologies in such a small place, you know? And then they moved to the pod got smaller. And I remember a person working at OmniPod said we used to have a picture of Arden hanging up here with an OmniPod on to remind us that it it wasn't as small as we thought it was like to kind of keep, keep us thinking about that, which I thought was really cool, and that's,

Alyssa 1:08:46
that's interesting, that you say that, because, like me wearing an OmniPod, it does seem so small, yeah, but on a tinier person's body, it doesn't seem as small. No,

Scott Benner 1:08:55
right? Yeah. And Arden was skinny and little, and she'd have it on, and they, they, I, there's a picture of her somewhere, and it was hung up, and the woman said, I would look at that and think we got to make that thing smaller, if we can smaller. Yeah. So this is really interesting, but anyway, I'm so happy that you guys are doing well, and I appreciate you spending your time with me for the last hour talking about thank you so much.

Alyssa 1:09:15
Thank you so much.

Scott Benner 1:09:16
Hold on one second. Okay,

the conversation you just heard was sponsored by Dexcom and the Dexcom g7 learn more and get started today at dexcom.com/juicebox a huge thank you to one of today's sponsors, gevok, glucagon. Find out more about gvoke hypopen at gvoke glucagon.com, forward slash juice box. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com, forward slash juicebox. OmniPod. If you're newly diagnosed, check out the bold beginnings series. Find it at juicebox podcast.com, up in the menu in the feature tab of the private Facebook group, or go into the audio app you're listening in right now and search for juicebox podcast. Bold beginnings. Juicebox is one word. Juicebox podcast, bold beginnings. This series is perfect for newly diagnosed people. I want to thank you so much for listening and remind you please subscribe and follow to the podcast wherever you're listening right now, if it's YouTube, Apple podcast, Spotify, or any other audio app, go hit follow or subscribe, whichever your app allows for, and set up those downloads so you never miss an episode, especially in Apple podcast, go into your settings and choose, download all new episodes. Hey, what's up? Everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording doing his magic to these files. So if you want him to do his magic to you, wrongwayrecording.com you got a podcast. You want somebody to edit it. You want Rob tickets for the 2025 juice cruise are limited. I'm not just saying that they actually are limited. We have a certain window to sell them in, and then that's it. Juicebox podcast.com. Scroll down to the juice cruise banner, click on it. Find a cabin that works for you and register right now. You are absolutely limited by time on this one. I'm so sorry to say that. It sounds pushy, but it's the absolute truth. Juice cruise 2025 I hope to see you there. We're gonna get a tan talk about diabetes and meet a ton of great people who are living with diabetes. It's kind of gonna be like floating diabetes camp, but you won't have to sleep in a log cabin. You'll get a tan, and it's not just for adults or kids. It's for everybody you.

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#1294 Weekly News 8/26/24

For the week of August 26, 2024

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 wherever they get audio.

+ 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
OmniPod, Hello friends and welcome back to another episode of The juicebox podcast.

This is the diabetes news that I found interesting for the week of August, 26 2024 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. When you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juicebox don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juicebox at checkout. That's juicebox at checkout to save 40% at cozy earth.com if you'd like to help out the podcast and type one diabetes research. Go to T 1d exchange.org/juice, box. Join the registry, take the survey. All you need to be is a US resident who has type one diabetes or is the caregiver of someone with type one if you're those things and you'd like to help. T 1d exchange.org/juice, box. It should not take you more than 10 minutes. I've done it myself. It's very easy. They ask you some questions. You know, all the answers. You answer the questions, and just like that, you've helped some news today out of Washington, DC, from the FDA, by way of Acton, Massachusetts. Acton, of course, where OmniPods are made. OmniPod five now has approval for use with type two diabetes. Wow. Let's see insulin. Says more than 30 million people live with type two diabetes in the US. 6 million of them require insulin. Of those two and a half million use multiple daily injections. The company is hoping to bring the OmniPod to those people. Here's what their study you know, you gotta submit your study to the FDA, see what they say. The results demonstrated glycemic improvements with the use of OmniPod five compared to prior treatments of insulin injections or pump therapy in adults with type two diabetes. So you're gonna get some automation for people with type two, that's going to be kind of awesome here. Sorry, there was let's see what outcomes included significant reductions in a 1c reductions in time in hyperglycemia and reduction in total daily insulin dose. Insulin also reported a large improvement in time and range without increasing time in hypoglycemia. That's pretty awesome. Well, people with type two diabetes using insulin automation is now available to you. I don't usually do this, but use my link, omnipod.com/juicebox Get started today. We'll stay with the theme here of devices being repurposed for other uses. OmniPod five for type two diabetes, and now Dexcom has launched something called the Dexcom stello. Now this is an over the counter. CGM, right. I'm just gonna read your press release. Today, Dexcom announced a significant product launch as another continuous glucose monitor is hitting the market. Dexcom launched its stello over the counter, OTC CGM biosensor, small wearable sensors specifically for people with type two diabetes who do not use insulin. Stello features a 15 day wear based on the g7 platform. It offers a software experience tailored specific for non insulin users. So Dexcom, can you get a stello at dexcom.com/juice, box? I didn't know that this, uh, this news report was going to turn into, please use Scott's links, but let's take a look here. Yeah, just go to my link, dexcom.com/juice box. Then when you get there, I mean, click on the Dexcom logo in the top left. It's green. It'll take you to the front page and you can check out Stella. They'll see how you came in. Okay, so that's what we've got so far. For news this week, I'll be back. I like the stello thing is good. You know what? I mean, people the type two. Let me see if I can find out more about this. Stella is currently available for purchase@stello.com so go to my link and then click on that, you'll see it either as a single pack of two sensors with a total wear time of up to 30 days for $99 or through a monthly subscription of $89 a month, it includes two sensors every 30 days. This is FSA and HSA eligible, all right. Well, if you have type two diabetes and you want to check out Dexcom, check out the stello, and hopefully one day insurance will cover this too. But for now, it looks like it's over the counter and out of pocket. Over the counter, though, means you don't need a prescription. That really is pretty great. I guess we're going. Stick with devices almost exclusively. This week looks like there's a partnership between Medtronic and Abbott. Looks like the collaboration is aimed at integrating Abbott's FreeStyle Libre CGM Tech with Medtronic insulin delivery system. Abbott will develop a CGM sensor based on its FreeStyle Libre technology that will work exclusively with Medtronic, automated insulin delivery system and smart insulin pen. This integration will enable automatic insulin adjustments to help. Yeah, we know how it works. Well, that's interesting. So you're going to take Abbott's glucose sensing technology based on libre and make a CGM that only works with Medtronic stuff. That's interesting. I wonder why they did that. We're gonna learn more about that at some point, aren't we? For clarity, this is the future stuff like the new simplara CGM from Medtronic is not made by avid as far as I know. Huh? I do wonder, we'll have to get somebody on and talk about that. I wonder why they did that. I mean, maybe you're just going to use people's, you know, strength, or maybe Medtronic looked and said, Look, Abbott makes great CGMS. We'll do that. And we don't have to make them, or they're going to make them and not, I don't know, and I can't find out right now, but I'll try to find out in the future. For you. I am going to finish up this week with a publication from the American Diabetes Association. It's called effects of SARS cov two, infection on incident diabetes by viral, excuse me, by viral variant findings from the National covid cohort collaborative, N, 3c, how about that? Clear as mud? Let me break it down for you. The study aimed to understand if the risks of developing diabetes after covid 19 differed across different viral variants. So they looked at different variants of covid to see if one or the other gave you a greater risk of developing diabetes. Data from the National covid cohort collaboration showed that the risk of new onset diabetes was elevated across all SARS cov two variants, those are ancestral alpha, delta and OmniPod, the increase in diabetes risk was similar for all variants, but showed a delay in onset with the OmniPod variant after 180 days, despite the milder severity of recent variants, the risk of developing diabetes post covid remains high, highlighting the need for continued monitoring. The research supports the integration of diabetes prevention strategies in a post covid era. That's interesting. The findings suggest that people recovering from covid 19, regardless of the variant, are at an increased risk for diabetes, making ongoing surveillance and diabetes prevention important components of care. That's what they say. The study specifies that the increased risk of diabetes after covid 19 includes both type one and type two, but most new diagnosis were of the type two variant, the incident rates of both types increased across all viral variants. Excuse me, with the highest rates observed during the OmniPod. Like we said, The study used data from a large cohort to assess the risk of both types of diabetes. If you're newly diagnosed, check out the bold beginnings series. Find it at juicebox podcast.com up in the menu in the featured tab of the private Facebook group, or go into the audio app you're listening in right now and search for juicebox podcast, bold beginnings. Juicebox is one word. Juicebox podcast, bold beginnings. This series is perfect for newly diagnosed people. You

I've been doing these news segments for a few months now, and they're really well received. I want to thank you for that and let you know if you see any news about diabetes that you think is interesting, head over to juicebox podcast.com and send it in through the link. There's a link in there. How to contact me. You'll find it when you get there. I know you will All right, guys, I'm out of here. Do me a favor if you need or want anything that is sold by one of the sponsors, please use my links when you do that, you are supporting the production of this podcast, helping to keep it free and plentiful, and you're just helping me out. I pay my electric bill with this money. I keep the podcast going. I'm not saying buy something you don't want, but I mean, if you're getting an OmniPod, then go to my link. You know what? I mean, that kind of thing you.

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