#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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