#1295 Alyssa and her Daughter’s Diabetes

Alyssa and her daughter have type 1 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.

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
I was gonna say now you understand it from both sides, right? Yes, are your parents definitely alive? Yes, they are. They are. Do you know was it difficult for your mom specifically or dad, that your child got type one. 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 vo 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 hypopin 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 kypo pen before an emergency situation happens. Learn more about why GEVO kypo Pen is in Arden's diabetes toolkit at gevok, 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. You can manage diabetes confidently with the powerfully simple Dexcom g7 dexcom.com/juicebox, the Dexcom g7 is the CGM that my daughter is wearing. The g7 is a simple CGM system that delivers real time glucose numbers to your smartphone or smart watch. The g7 is made for all types of diabetes, type one and type two, but also people experiencing gestational diabetes, the Dexcom g7 can help you spend more time in range, which is proven to lower a 1c The more time you spend in range, the better and healthier you feel. And with the Dexcom clarity app, you can track your glucose trends, and the app will also provide you with a projected a 1c in as little as two weeks. If you're looking for clarity around your diabetes, you're looking for Dexcom, dexcom.com/juice box. When you use my link, you're supporting the podcast, dexcom.com/juice box. Head over there. Now

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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