Scott Benner 12/7/22 Scott Benner 12/7/22

#804 Bad Breakup

Kristina has a child with type 1 diabetes and their endo ghosted them.

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Scott Benner 0:00
Hello friends, and welcome to episode 804 of the Juicebox Podcast.

On today's show we'll be speaking with Christina, she's the parent of a child with type one diabetes. And she's here today to tell a story that I found delightful. It's in the title, but I don't want to give it away in the description. So there's going to be a breakup in this episode. You might find it interesting. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you're a US resident who either has type one diabetes, or is the caregiver of someone with type one, please consider filling out the survey AT T one D exchange.org. Forward slash juicebox. When you do this, you'll be helping people living with type one diabetes, you may be helping yourself and you're definitely going to be moving type one research forward. This will take you fewer than 10 minutes, T one D exchange.org forward slash juicebox the easiest thing you'll do on your sofa today, that will actually make a difference. You know, I mean unless you're gonna like beta

today's episode of The Juicebox Podcast is sponsored by touched by type one touched by type one is an organization helping helping helping helping people with type one diabetes, and they'd like for you to learn more about them by following them on Facebook, Instagram, or checking them out at touched by type one.org. The podcast is also sponsored today by Ian pen from Medtronic diabetes. If you want an insulin pen that has a ton of features that you find it insulin pumps, you should check out the in pen at in pen today.com. And finally, today's episode is sponsored by us med. If you'd like to get your diabetes supplies the way Arden does head over to us med you can get your free benefits check by calling 888-721-1514 or by visiting this special site just for Juicebox. Podcast listeners. Us med.com forward slash juicebox

Kristina 2:30
My name is Christina, I am the mother of a type one diabetic. My son Clayton has been diabetic for six and a half years.

Scott Benner 2:39
The first email I have from you goes back to 2017. Do you know that?

Kristina 2:44
Yes, I do. I recall.

Scott Benner 2:48
I just saw that today. And I thought, well, that's crazy. Not

Kristina 2:54
good. It's funny to think back like I mean, I think just because we've been in it for so long. You know, like when you're first diagnosed you like think about time, like I think about, you know, the two and a half years before he was diabetic. And when you're like when you become diagnosed, you think of like, wow, he's been, you know, not diabetic longer than he is diabetic. And then you kind of hit that halfway point of like, okay, now he's been diabetic the same amount of time, you know, if he was before he was, you know, diabetic, and then you kind of hit the tipping point. It's like, well, now it's been longer. And then you kind of just stopped counting, because it's just life. Yeah, like, I don't really remember a time before. I don't mourn that. Like, I don't think about when he was two and not diabetic. I don't really think about it. It just is Yeah, I

Scott Benner 3:43
think I find that to be a feeling that, um, that wanes over time. And it is very interesting to see how we measure time. It's always it's interesting how people do it. You know, it's, it's been twice as long, it's been the same amount of time. It's 50% off, like, who cares? You know? It's just a way to keep track, I guess. And and I think your point is, at some point, there's nothing to keep track of, but this is just what it is. I have that feeling a lot. That what's the feeling I have a lot I was just thinking about last night was on a long drive last night. And I was thinking about how all of this feels like such a big deal at some point. And then you realize it's not and how I wish you could take that feeling and give it to people who are more newly involved. You know, but I don't know. I don't know if you can.

Kristina 4:33
Yeah, we might get there because I'll this will lead to why I came on but we have a new doctor now. And he actually kind of said to me, like, you know how old Clayton he's nine. Okay, he's like, Well, you know, you don't really have much more time with him like doing it. And I like that like shocked and I'm thinking like, this is my life like this is all I do kind of you know, like, What do you mean? Like what I'm doing is such a small fragment than what he's going to be doing is all of It's kind of like not doing what I'm doing is not important. But you know, like, I view it is so much bigger. I guess in reality what it will be?

Scott Benner 5:10
Well, first of all, it was the kid going to college when he's 12. What are we talking about? It seems like not to not to just make fun of what we just talked about. But it seems like he's been alive for nine years, and you have 100% of that time left before he becomes a teenager. So your entire experience has to happen again. And then that part will happen. But I'll share with you that very recently, were doing something privately, that led someone who I don't really know, you know, who's just helping with, I don't know, like a personal thing. And they said, Well, how do you envision your retirement? And I said, I don't know how to answer the question. Like, it took me completely by surprise. And so I think the guy just felt that I didn't have an answer and let it go. And then we spoke a couple of weeks later. And he says the same thing again, you know, I guess we're gonna have to figure out how you envision the end of, you know, your working life. And I really thought about and I told him, I said, I have to be honest with you. That question has now made me sad twice. And he said, I don't mean to make you sad. And I said, No, no, no, not sad like that. sad, because I don't know the answer. Because when I think about myself, I just think of myself, this is gonna sound sad. No, it is, I guess. I think of myself as a tool that makes money and comfort for the people I care about. And I don't know what I would do if I didn't have to do those things anymore. Yeah, I can't even imagine like, I can't like when you say to me, like, what would you do? Scott, if you had a week off? I don't even know how to consider that. And there's something I mean, wrong with that. But at the same time, you know what he's told me. That's what everybody says. So yeah, yeah, didn't feel too special. Luckily, hopefully, we'll figure it out along the way. And I won't just sit around like watching television going, I used to have a podcast.

Kristina 7:11
Well, sometimes people's heart you know, hobbies become their work. And then they, you know, do that work for their whole life. And then they don't really have a hobby after work, right? We actually joke about this with my dad, like, he formed his own company. It's older than I am, like, we kind of joke. It's like, what would he do? Like he goes to his work on the weekends? Like he just, I don't think he knows what to do. What is free time, you know, kind of a thing. So yeah, kind of just think helpless to work.

Scott Benner 7:38
I think I've said this on here before, but the day, the evening, we dropped coal off at college when he was a freshman. When we got home, the girls went to sleep. It was a long day. And I did the laundry, the coal left behind? Because I just didn't like, I didn't know what to do. You know. So I would like to know what I like. But at the moment, I think the truth is, I like making this podcast, I like helping people. And I'm very, like, fulfilled and happy doing this. So I maybe it just is an indication that I'm so happy. I I don't want to imagine something else at the moment. But I would like to sit on a beach for a couple of days. But that's not a whole life, right? Or is it? Can I just sit on a beach forever? Probably not.

Kristina 8:25
If you move somewhere where warm and sunny?

Scott Benner 8:28
Do you think I could just look at me, I'm putting you in charge of my life. Now. We know each other tangentially Christina, go ahead and you decide. Do you think I could just keep making this podcast but probably not put it out as frequently as I do. Now, as I get older and older, I could probably do that.

Kristina 8:45
You probably could. And I'm gonna be honest with you, Scott, like, I kind of don't listen anymore. To no fault of the amazing podcast, but I think you've said this before is like, Yeah, this isn't what people in Facebook groups, you know, you come when you're newer, and you have a question and you're kind of more active and then you kind of just let it be in the background. And it's just kind of, you know, there you see things go by maybe you put some input in here or there for the podcast anyway, for me. I live in California, so I used to have a pretty bad commute into the city. And so that is where I spent a lot of my time listening. And then over time, you know, other interests come into play or whatnot. And actually now working from home I just don't really have time to like podcasts. I don't really listen much anymore.

Scott Benner 9:30
No, no, I completely I completely understand it would be absolutely maniacal and insane to think that everybody is listening to every episode forever and ever. That would be crazy.

Kristina 9:42
I was very much in order. So I had you know, gone one to whatever, you know, say 200 And then it's I felt like I got so far behind like but I know I want to go back. I don't want to just pick up at number 400 on whatever.

Scott Benner 9:53
Can you maybe, maybe just start with a couple of months and start with the new ones. I'm actually much better at it. No, I think I don't know. Who knows, we might get to the end of this. And you'd be like, you're actually not better at this at all. Who knows what? Well, you've been on the show in the past. Am I right to say that?

Kristina 10:12
Yeah, I think it was back like 120 something. Yeah. Do you remember? We were like two years in two years in at that point.

Scott Benner 10:20
Do you remember the title of the episode by any chance?

Kristina 10:23
The normal floor?

Scott Benner 10:25
Oh, I remember saying that. Oh, yeah, Episode 127 2017. i Isn't that interesting? I listen, that's episode 127. I'm about to put out episode like 670 something. Okay. That's amazing, please. So my point is, is that I don't have complete recollection of everything. But I feel like I remember that you were in an institution somewhere, and you got moved to a floor. And it was kind of I Am I about right. And that was the That's right.

Kristina 10:55
Yeah, I will, because I think we're gonna pick you. And then we got moved from the PICU to like, the normal, I don't know, the normal floor. And then I don't know what it's called. You know, that's where that was, you know, during diagnosis anyway.

Scott Benner 11:05
So you refer to it as the normal floor. And that amused me. And that's how it ended up being the episode title. Yes. I have a system. That's amazing. Okay, so what made you want to come back on?

Kristina 11:19
So I had, you know, posted, you know, in a moment of frustration and irritation to the group that our doctor was essentially firing us. And that, you know, I just wanted to express irritation in that. And then it was like, Oh, this would be a good episode. Because I think, you know, I don't think that happens very often. Maybe more. So we would fire our endo and not really the opposite way. But that is what happened to us.

Scott Benner 11:48
I wish people understood how my brain works. I'm all lit up inside. Now. I'm like, Oh, this is an episode. I love it. Okay, so why don't we do a little bit of backstory, and then we'll move you up into it? So let's just get people like, like, in line, your son, right? Type one. Yeah. And how old was he when he was diagnosed?

Kristina 12:07
So Clayton was diagnosed when he was two and a half? And

Scott Benner 12:10
I will say, No, he is 992 and a half. I know you're like, Scott, we just did this whole thing with the math and 918. My nine is doing more, Christina cut me a break. He's nine now. Any technology?

Kristina 12:25
So yes, he's on Dexcom. And on the pod and we use an algorithm based system that rhymes with hoop?

Scott Benner 12:33
Or is it a is it a problem? This? I don't know?

Kristina 12:37
I wasn't sure loop. Yes, we're loopers we have been for the last couple of years.

Scott Benner 12:41
Okay, DIY loop? And how are things generally going?

Kristina 12:49
are good. I mean, I still feel like I'm like, kind of learning never really 100% getting it, you know, things are amazing for like, three days where I think, wow, these are the settings they should be and then not so much. So, you know, schools, tools, challenging, I feel like, you know, I feel like they're active more than they sit in a desk. And you know, in theory, that's wonderful for kids, I want kids to be active. But for a diabetic mother, it's or for a mom, that's taking care of the diabetes and makes it very challenging. When you have like, you know, recess, pe recess and like all in a row. Anyway, so it makes it kind of complicated. Of

Scott Benner 13:27
course it does. But so it's funny, I think I think of the podcast as, as a pathway to diabetes, success, and comfort and ease. And so when you say to me, I don't listen anymore, in my mind, that puts your a one C at five, five, and you never think about diabetes. But that's obviously not true. That's just the thing that I put on what you said. So first of all, are you comfortable sharing a onesies and things like that?

Kristina 13:54
Yeah, of course. So since about, I actually had to look this up, because we've been actually in the sixes for so long that I don't even remember really, when that was that that started, but it was about mid 2017, we kind of like broke into the sixes. And we're kind of saying to like mid to high sixes and I was just really wanting to break lower than that. And I feel like lupus kind of what helped us kind of get there that was about that time. So we kind of went from the mid to high sixes to the you know, mid to low sixes in around 2019 and have been there ever since.

Scott Benner 14:29
You ride between six and six and a half ish in that space.

Kristina 14:33
Yeah, and we even had some low some high fives so we kind of broke into that. But this goes into where our doctor was not really in line with what I was doing. So

Scott Benner 14:42
Christina, don't give it all away at once for only 15 minutes. All right, we'd like people to listen and enjoy the conversation allowed to build on our end so that maybe we can find other topics and ideas. conversational. Don't just throw it all out at once. You don't. You don't come into the room like can just be like I'm here. Let's do it. Write a bit of a dance first, let's do the dance. Well, so obviously, that's successful no matter how you cut it, honestly, going all the way back to 2017, you're you're doing really well. I understand the frustration of being in the high six isn't thinking I just want a little more out of this. What about an algorithm got you mid to high six to low to mid sex?

Kristina 15:24
I think where you gain a lot is there, the overnight the sleep time, we don't know when no one's eating. It's wonderful. Right? So I think that that's kind of what helped it helps with the sleep and just you know, all that an algorithm based system can kind of provide and I feel like that's where we noticed that the most. It seems as though because he's still small, he kind of seems between a Basal rate, you know, so I don't know, sometimes he's got that negative Basal when he wakes up, sometimes not so much just like, well, was that food related? Where why he's waking up with positive basil? Is it like no pod? And then or why is it negative? Is it just the settings are too aggressive? And it can't take it away fast enough? You know, you kind of go back and forth. What's the way? 60 pounds?

Scott Benner 16:12
What's his Basal rate? Do you have to have a lot of them? Or do you just have one?

Kristina 16:17
No, I had one. I think we're at point three right now.

Scott Benner 16:22
Okay, that seems low for his weight.

Kristina 16:25
Yeah, I've heard I actually I saw I have listened to a recent podcast where you were talking about oh, X amount of

Scott Benner 16:31
fire. So is his insulin sensitivity? More aggressive?

Kristina 16:41
It's higher, I would say. All right, we have like a higher number like 180, something like that higher

Scott Benner 16:47
numbers are less aggressive.

Kristina 16:49
Okay, okay. I don't like that about Oh, listen, if

Scott Benner 16:53
you kept listening to the podcast, you would have heard me go crazy about it for a number of episodes like 300 episodes ago, where I was like, Who is the genius that decided that more aggressive was a lower number? I mean, come on. And then math people are like, it's obvious if you understand math. And I'm like, Well, if I understood math, I wouldn't have this damn podcast. What I so I guess I would just do the math for the diabetes. Maybe that would work. So okay, so interesting. And he doesn't, he doesn't get low.

Kristina 17:21
No, he gets low more often. That's the problem. And this is part of, well, if he would let me talk about the doctor. Anyway.

Scott Benner 17:30
So tell me a little bit about that for a second. So he when he gets low, when what time of day, does it normally happen? And what are we calling him? Well.

Kristina 17:39
So it's a kind of a two part if you're like separating the day in two parts, you know, like daytime at school, because school is the majority of the week, you know, we kind of can have lows. Let's see. So he's eating breakfast around like 777 30. And then he might go low, about three between three and four hours later, which is like also in conjunction with like a recess time. So it's hard to say it's like, well, is that breakfast too aggressive? And it's just kidding, the tail end of that insolence still working Is it because he's running around? You know, who knows I'm not there right? Is that That's why school is a little tricky. Do

Scott Benner 18:19
you see the loop being more aggressive in the morning with this Basal taken away or how does it work?

Kristina 18:31
Not necessarily, sometimes it's the so you know, you'll just breakfast and then it might hit the you know, it might hit a spike because it's starting to rise. So it wants to give more insulin. And then sometimes that might cause the low which is I think why we put the sensitivity up higher to kind of make it not be so aggressive.

Scott Benner 18:52
Which version of the of the loop are you using? Is it auto Bolus? Or is the or it is

Kristina 18:57
yes, we are on auto Bolus. That's kind of some low that can happen in almost we can sometimes get a repeat low although I do set remote overrides from home like a higher target so that we can avoid that. Sometimes he might get a secondary one. And then I would say another low that kind of can happen if we get it overnight, it's going to be because maybe I missed the mark on dinner or that's just you know, he's active he's nine so sometimes he eats dinner and it's like I'm gonna go shoot baskets it's like well that's great because then he can make himself you know essentially go low before bed or then almost right after he goes to sleep.

Scott Benner 19:36
Yeah. So do most time do most of the lows you see revolve around activity

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it's unplanned activity it's just something that pops

Kristina 23:49
up. Yeah. But not like when the neighbor got a trampoline. That was real fun.

Scott Benner 23:54
I would have I would have made a move. I would have said Do you cannot put the trampoline here next to my house please. What are you doing? Did you tell him did you go over and be like listen,

Kristina 24:02
it's his best friend. So no, I can't Oh my god.

Scott Benner 24:05
I'd rather have a handgun range out back than that a trampoline seems seems less dangerous than me for my children to be involved in. Well, that's thanks I mean it's very it's not not uncommon obviously for for that and you can't I mean if you could plan for it then you could do like an override on loop. Of course take it back but how do you plan for it? Right it's

Kristina 24:27
you try to be as much proactive instead of reactive but I feel like sometimes with his age and then just what's going on you kind of just have to the nurse at school is really amazing and she knows him and she's been with him ever since kindergarten. So she kind of like understand how he how he runs and kind of can anticipate with me as well so you know that's that's nice.

Scott Benner 24:47
Okay, ask you away from being away from food away from activity away from active boluses Where does his blood sugar sit stable up?

Kristina 24:59
Well, Scott, he's not So he's constantly wanting to eat. When is this time you speak?

Scott Benner 25:03
Yes. I think it's 230 in the morning, where's what's his blood sugar 230 In the morning,

Kristina 25:08
I would say it's sub 100. Okay, we'll float between like 100 it can almost get down to like the low 70s. And then it might like bump back up. It will take away basil for so much. And sometimes it causes it to, you know, makes it rise, but sometimes it rises. Sounds like too much like it, then it he gets, you might get up to 120 in the mic go back down. So he kind of like floats around. It depends. I would say not every not every day is the same, which is

Scott Benner 25:37
I'm trying to figure out. I'm trying to figure out why. You're seeing a six mid six a one, see when you're putting this much kind of focus and effort on it and add stability. He's got stability in sub 100. So that that that's interesting to me, are you correcting a lot of lows with food maybe and then not really addressing it? Or something like that?

Kristina 26:00
Are you this, I would say food spikes. We do Pre-Bolus. At school, it's hard to Pre-Bolus because he has a recess right before lunch. And I just don't feel comfortable. Like if you were home, I would be sitting watching. I don't know, it's school, if they're five minutes late to the lunchroom, if we do find if his blood sugar is in a good spot, and it doesn't look like he has a lot of insulin on board. And you know, things are looking the prediction. You know, wine is looking. Okay. We will do a five minute Pre-Bolus for school lunch. Okay, and that is a lunch AIPAC.

Scott Benner 26:40
And then you see a spike with that? Yeah, we do. We could put a number on the spike for me.

Kristina 26:47
Um, he could probably get close to 200. Interesting. And then it kind of wants to stay and then sometimes it will crash because then you have another recess that happens in the afternoon. Or if it doesn't, by the time he's done with school, he walks home and then you know, it's like, almost low, and then he's got to eat give any as to eat because it's like, say coming down below 80. And then you can't Pre-Bolus That snack, right? Because then he's eating?

Scott Benner 27:17
Yeah, well, then you shouldn't get that roller coaster. You shouldn't have to Pre-Bolus that snack. You should be able to Bolus and eat on that snack. The

Kristina 27:25
spikes, it still spikes. Well, then, maybe because the quality of what he's eating,

Scott Benner 27:29
then, Christina, then why can't you Pre-Bolus it? Because he'll get low first.

Kristina 27:37
Walk Home always makes them go low.

Scott Benner 27:39
Okay, but I'm saying if he gets home at 80 stays at diagonal down. Yeah, and you know, he needs food. Yes. What? Why? Why can't you Pre-Bolus A few minutes before he eats? Because he's at work because you're not there with him.

Kristina 27:54
No, I am there with him. I guess we just get I normally just dose it and then get it ready and then eat. So I guess it is a few minutes. But you know, normally at that time he wants like, I don't know, chips and an apple or whatever he's eating. I think it just the food type is just I commit I do. Okay, so Luke, normally doesn't want to dose that. But I normally will override what is the suspend, and I'll put it at like 65 really quick so I can get their recommendation and then dose that amount. And then I'll switch it back and put it back into where what it normally is like 82,

Scott Benner 28:34
or whatever it normally is. I think we actually suspend it 65 No matter what. And if I was in that position at diagonal down about the chips or an apple, I would just tell her, like put in however many carbs it is let's just pretend it's 30. And then she'll say it doesn't want to give anything and I'll tell her Bolus anyway. Yeah, you know, so sometimes you have to think for the algorithm in that scenario, but

Kristina 29:00
I'm wondering if I should like over do what it's even recommended. Or

Scott Benner 29:04
you could do that which is you could not not Pre-Bolus at all but over Bolus. Have you heard the defining diabetes episode about over bolusing? No, because you stop listening to the podcast. Christina whatever. Okay. I mean, it feels like we're on here to talk about a bunch of things that don't need to be a problem but just you stopped commuting. Is that what's going

Kristina 29:29
you know, I really didn't like during our Nafi choice that oh, there's I might have to do it again. Yeah,

Scott Benner 29:34
get back in the car and just drive around during the day. I don't do you not vacuum or do a dish or something you could listen Christina Are you a kept woman? Okay. Is there no vacuuming? What's going on? Are you just are you just is it 1950 Are you bond bonding with your hair up and paper curlers waiting to make a make a gimlet for somebody at four o'clock? What's going on over

Kristina 29:55
there? Definitely not that is not happening.

Scott Benner 29:59
No one Everyone's bought me a drink. I just want to be clear about that. If it happened one time, I would think my mom was dead or I had cancer, and I was the only one that didn't know it. I was like, why are people being guided to me? Okay, so, so we have our answer, right? Your six and a half a one C comes from not not getting the timing right meals often enough. Yeah, exactly. So you wouldn't going

Kristina 30:25
backwards to school time. Like I said, if we get that, say one low, and then it almost does like it wants to head into a repeat low that always is in conjunction with lunch, so it won't recommend anything. But like I said, the nurses great. I just have to pick an amount. So I'll be like, Just give him a unit and a half or give him whatever. And so maybe it's just my estimate is not good enough, you know, or I'm just so conservative because he's at school that I'm like, just scared to like,

Scott Benner 30:52
I mean, that's what it sounds nice. And then I'm like, Yeah, that's what it sounds like to me as a as a, you know, a dispassionate onlooker, it seems like you're being overly careful at school trying to avoid lows. But then you're making a lot

Kristina 31:05
like the PTSD from all of this school Doctor issues. I feel like we thought

Scott Benner 31:09
so. Interesting. If I may act as your therapist for one second, then we'll move on. Okay. You're trying to avoid a low at mealtime. And instead creating a spike that later turns into a low? Yes. So are you avoiding lows?

Kristina 31:30
While I'm trying to put our you know, I'm not alright.

Scott Benner 31:35
So instead of preparing for failure, I would plan for success. Does that make sense? Yes. All right. That's it. We're done. Let's get off. No, no, I'm just kidding. All right. So what the hell happened? You went to the doctor and you got yelled at this is my this is the whole thing. You are so serious. Your your doctor told you out and see you're done. You can't be a patient here anymore.

Kristina 31:57
No, she couldn't really say it because I don't think she was like, you know, aggressive enough. But I kind of had to be like, is this what you mean? And we kind of both looked at each other like, okay, and then no one came in to make the next appointment?

Scott Benner 32:10
So she broke up with you? Yes, pretty much by treating you poorly and hoping you would go away.

Kristina 32:18
She just didn't agree with the amount of lows we were having. Okay. And unfortunately, yeah,

Scott Benner 32:23
what are we calling Allah? What was she calling well?

Kristina 32:28
Below 70?

Scott Benner 32:30
What are you calling low?

Kristina 32:33
That's below 70. It was all about the Dexcom data, to be honest. So Dexcom you know this, that when Dexcom works, it works great. Unfortunately, when it doesn't work, especially in an algorithm based system, it's like, crap, shoot, you know what I mean? Like? I don't for Clayton.

Scott Benner 32:53
Hold on. I don't I don't know what you mean. Are you talking about like maybe compression lows or first day of a sensor?

Kristina 32:57
What is above all of the above? So for Clayton? Clayton, the first day of a sensor is super, super jumpy, like where it will think it's, you know, 110. And all of a sudden, oh, no, it's 130. And so loop will dose off of that, and then make him go low. And it just, it's it can't correct fast enough. So actually, this last sensor, I opened loop. And it was amazing. And I was like, Wow, maybe I need to do this for every sensor. So that is maybe what I'm going to be doing going forward to try something new to see if we can help that first 24 to 36 hours.

Scott Benner 33:33
So let me make sure I understand. On the first day of a sensor, you get kind of wonky jump around numbers. By the way, I might just calibrate it. And had you listen to the episode about when to calibrate a Dexcom sensor, you might know what I'm talking about. But since you didn't listen to it, you don't know what I'm talking about. But I'll put that episode number in here for you at the end. But Christina, I appreciate you telling me earlier about the listening thing because now I can teach you incessantly. So I might just calibrate it. And as some people will be like, Oh, you're not supposed to like I don't care. There's a whole episode about it. Go listen to it. It's got a ton of different opinions in there, including mine, Jenny's. And literally like dozens from people in the Facebook group. Everybody sent in their kind of best practices, we put it into one episode. Anyway, so you're saying that he jumps around? Meaning is that, you know, suddenly the algorithm might think he's 140 and give a Bolus Now meanwhile, it's only giving us 60% Bolus, right? Well, it's up how you have yours. Yeah, right. And then that makes him low. And instead of your doctor looking at that and saying, Oh, that's a limitation of the technology. They're blaming you.

Kristina 34:44
Yeah, I just don't although she was supportive of loop and fine with us doing it. I don't think she had enough knowledge. And to her credit, I don't expect every doctrine to know all of the things you know, but I think that she wasn't able to she didn't know the system enough to be able to then give any advice I used to help.

Scott Benner 35:01
Christina, how much do you need to know about something to know that it's an auto Bolus? And when it sees a number it boluses. I mean, it's not like you, you weren't getting her to like, she didn't have to learn a new language did she? Like, you know, she wasn't trying to pick up like 600 year old Yiddish or something like that, right? Like she, she's just trying to understand a slightly different way that this algorithm works. I'm saying, I think you're protecting her, this feels like a breakup where you're still protecting the person who did something wrong. This is fun. So it tells me Tell me, like, take me through that, that, that entire visit to the doctor, how did it go?

Kristina 35:43
So that particular visit, or just like our experience in general,

Scott Benner 35:46
with, yeah, let's start high level, and then we'll go into that one specifically. Good idea.

Kristina 35:52
So I can go back to the beginning.

Scott Benner 35:54
Yeah, go to the beginning, we're all good.

Kristina 35:56
So to be honest, I actually didn't pick this Docker. So when we were diagnosed, and, you know, we went to clinic with the actual doctor that was like, in the hospital with us. So I had, like, you know, good feelings towards that person. And then they moved on to Yale, because, you know, they went to go do great things. We moved to a location that was much closer to home, because the other spot was like, over an hour away. So we're now we're going to, you know, still within Stanford, and you know, just someone that's nearby. Okay, great. So I think for the beginning portion, it was very much like, you guys are doing great, you obviously know diabetes better than you know, you know, your own diabetes better than we would, which is, I think, sometimes can be a common thought with doctors, which is like, obvious, we're living with it day in and day out. And you're just seeing, you know, the numbers here and there. So, I felt like we had that support. And then when we started looping, the I think there was a, although she wasn't as familiar with it, the doctor, there was a CD that I think her daughter was living, so she was familiar with it. So they understood kind of, you know, she understood what we were kind of doing. And so there was that support that it was like it was fine. You know, like, it's not like I had a doctor that was saying, Oh, we don't support loop, like I'm not giving you a prescription, it wasn't like that. But, you know, we would come in, and they would look at our Dexcom clarity, and they wouldn't download our meter. And I'm actually really good at doing finger sticks. Because going back to the Dexcom, we actually stopped using the Dexcom. Code. And we started doing daily finger stick calibrations, because I have felt that those finger sticks help the Dexcom work better for Clayton than using the code does. So we do do finger sticks quite frequently. And going back to the Dexcom. Unfortunately, he just does get a lot of compression lows, we get a lot of like, second or third day, low night trends, where he will just be low ello W for three hours until it can kind of move itself out of its way. And the sensor really only lasts for him about six or seven days. And I have to pull him

Scott Benner 38:03
when you just test during those ello ws he's not actually low.

Kristina 38:07
Now. So this is where I go to where the doctors using data. That's not really true in you know, you're getting, say a nine or 10% low on your report. But I'm like, You're not even checking my finger six, but I'm really you know, we're not showing, you know, so

Scott Benner 38:27
I don't understand that at all. So you're clear with the person about this. Also, you're not a crazy person, right? You seem like a reasonable human being. And so they're treating you like you're lying where you're making it up or I don't understand, like, why would they not just believe you?

Kristina 38:43
Yeah, I think just not wanting to go that extra step or like, I mean, there was even times where she's like, Well, what about 2:50am? Like, what was his blood sugar? I'm thinking, Well, if you downloaded the meter that I brought gave to you, you would see So I'm sitting there going scrolling back. No, he was 78 or no he was whatever she would give me like pamphlets of like, why it's better to have your blood sugar in the sevens, it's more safe to not be hypo unaware and all these things I'm like, This is my goal is to get him in the fives like so we're not like talking the same language here,

Scott Benner 39:13
right? Is she just an ass cover? Or she just because I get listen, I get some ask covering statements made to me, you know, once in a while. And it's always around a low. Like, they'll look at a low index card or this is too low. It's dangerous. And I say and that looks like a compression load to me. I don't think that's real. I don't remember anything like that, you know, around insulin or food at that time. I think that's just an anomaly. And our RCD goes, no problem, great, but they still say it. Like Like they say it as if they have to say you don't I mean, and but mine takes my takes what I say at face value and moves on where it sounds like yours was just sort of like, here's a pamphlet, stop doing that.

Kristina 40:00
Yeah, I think she really just believed what, you know, she thought to be true, you know, cut and what I was saying was too dangerous. And you're, you know, like, a line, that's not good kind of a thing, and you're only getting your agency because he's too low. And I'm saying, but the data is not like, what you're looking at is not true. And she like what your ad wants us to close to that. So I, you know, I don't know, we kind of would just leave every time being like, okay, and this was the thing is, I wasn't against any advice. I wasn't coming there saying, Please help me, right. But I wasn't fighting against anything. And her only advice she could give was just make everything higher. And I said, well, but you might reduce the lows by making things higher, but then you're taking away all my good numbers that are in the middle, and you're making them higher, and then you're just making my highs really high. So I don't think that that's really sound advice. Like, I feel like we need to tackle these certain times that I'm struggling with or that I'm telling you, school is really hard for me, it's really hard for me to figure out his schedule, and not really,

Scott Benner 41:06
and you're saying please help me with this. You're saying please help me with this? And their answer is, we'll just put the kids a one c into the sevens and none of this will be a problem. Yeah, yeah. I tell you something, Christina. And people with seven agencies get low too. That's not it's not a full thing. Well, so it sounds like to have two different perspectives. Right? And obviously, you step back like adults, and you said, Alright, look, get your clothes that televisions yours. Right? The dressers mine, everybody get out? We're going to start over again. But no, it went right to Silent treatments and bad communication. This is the part I'm dying to know about. Tell me about the moment when she broke up with you.

Kristina 41:50
It was a while ago, so I I probably had more fire and like, I remember it better back then when I had originally.

Scott Benner 41:58
To get y'all stoked up to me like can get you excited. If you want like cheap, mistreated you and she doesn't care about your kids health, I can get you upset if you need me.

Kristina 42:07
No, I think she I think she was just more like, well, if you continue on this path, I can't really you know, help you with what you need or like your prescriptions, you know, like sort of just like it was a very roundabout way. And I kind of like, understood what she meant. And I was like, so if I'm not getting in the numbers that you are wanting, you're not gonna want to see him anymore. Is that what I'm getting at? And so it was kind of just, she wasn't really saying it. And I was trying to feed off of what she meant. But I did I did straight up tell her I said, You know what, I don't think you would be happy with a five a one c and if he had zero lows, and she said, No, I wouldn't like she so it's so then that shows me that wasn't always about just the lows. It was that she just didn't want his a one C in a five or a six.

Scott Benner 42:53
I don't want to be in who but she's foolish. That's what you're telling me? Right? Like she she had something she wanted? And she was trying to push you towards it. Yeah, yeah. And would make up excuses along the way about why you shouldn't be where you are. What she really means is, I want this kids a onesie in the sevens. And you fought back. Christina, did you guys have sex one last time? That happens? We did not know. Because sometimes during breakups that happens. You know what I mean? You're like super mad at each other. You're like, let's just do it one more time. Christina, are you laughing? Because that's happened to you? Or because?

Kristina 43:32
No, I'm not. Okay. All right.

Scott Benner 43:35
Just you're afraid somebody you know, is gonna listen to this. I hear what's going on. Okay. Okay, so was I'm

Kristina 43:42
sorry, it wasn't like this more of like a fight and whatnot. But it was, you know,

Scott Benner 43:46
some hair pulling to this. Can you imagine if the two of you were like, shaking each. Anyway, so, so seriously, though, she left the room. And then the port, the part where someone comes in to schedule you for your next one just didn't happen?

Kristina 44:03
Yeah. And it will she had said to me, why don't you take some time to think about, you know, maybe to see if I can make any changes towards what she wanted.

Scott Benner 44:13
We need time apart. She told you.

Kristina 44:16
You know, what the, the sad thing is, though, is that I kind of was upset about it. And I did kind of, I did kind of concede, and I like kind of raised things higher to like, kind of see, well, is she kind of right? Like, should I be? Am I being too aggressive? Like, am I you kind of put on yourself and I spend so much of my time trying to make things right. And it's like, this is so much of my life and like what I do, I'm trying to do the best for him and like, you know, and what you that resulted in is us getting a 6.6 a one C the last time and so it's like, no, no, I'm gonna go back and do what I think I need to do and I'll try to fine tune it. Figure it out. The school year is almost over. I'm sure I'll figure it out by the last day of school and then we'll have a new schedule next year.

Scott Benner 45:00
Right. For next year, his his recess won't be at the same time or something like where he'll weigh 10 pounds more, etc, etc, etc. Right? Like, something's going to change, I'll tell you, that's my biggest takeaway from raising a kid from two to 18. So far with diabetes, is that anything you think of is this massive problem is just going to change go away or something? You know what I mean? Like, like in six months, so it's, it's not even worth being upset about it. I mean, you just sometimes there's, I don't know, it's like choppy water in a boat, you just sometimes you just have to get through it. And then it comes down again, on the other side, you can't make the world stop waves, right. But you can get through it as best you can, and then move on. And it would have been nice if she said something like, Hey, let me try to help you get through these bad recess times or whatever. I see your goals. They're healthy goals. And I'm going to try to help you with the part you need help with. You keep doing the part you're doing great with. And this, this too shall pass and we'll move on, but instead, not nice. Can I ask you? This is based on my episode I did with Arden, which you probably didn't hear

Kristina 46:08
that what I was very curious to hear. And I'm wondering when she's coming back, and I see everyone post about her like, I know she did. Like it's not her favorite thing.

Scott Benner 46:16
It's common sense. Don't worry. I'm gonna get her again. Did this doctor have high cheekbones? Was she blonde?

Kristina 46:25
No, no,

Scott Benner 46:26
these are reasons why Arden would dislike her immediately. Did you hear Arden to say that about the cheekbones? No, I don't recall that. Like I don't trust people with high cheekbones. Why? She's? Yeah, she's got like a whole reason. But you know, anyway. And if you have high cheekbones, I'm sure you are probably very trustworthy. And please don't write me an email that your cheekbones have nothing to do with your personality. But so you did step back that you did the adult thing you listened. And you thought, Okay, let me take some constructive criticism here and see if she's right. And it just wasn't right for you? No. All right. So now you see. Who do you go to for an endocrinologist? How did you find somebody who would be more amenable?

Kristina 47:15
So I had kind of, you know, reached out like, Oh, my God, what are we gonna do? We're gonna go because the other doctor that's in that same office, I had actually seen one time, and I wasn't really fond of. So I knew I didn't want to go back there. But I was also thinking, I don't want to drive really far again. So there are, you know, a few diabetics in the community who like Vin, the city I live in. And so I kind of reached out in text, like, Who do you go to what do you all the things and so someone had recommended to me a doctor that unfortunately was far away for another hour or so. But that is diabetic himself. And that loops. I'm like, Well, that just is who I'm going to see. Because that sounds like the dream. And yeah, that's what I need to do. And so he actually only does telehealth, which I mean, now in this day and age, I guess, you know, okay, that's fine. So we have only met with him one time back in January. And he pretty much didn't care about the other doctor. I said, Hey, you know, like, he saw the the decks calm. He's like, I don't even care about your loads, like so it was like such a different, like, Okay, wow. So, like you were home, find a doctor that tells you what you want to hear. But it was nice to get a different perspective. Maybe that like you? No,

Scott Benner 48:27
no, I got. I think that's terrific. Did you try juice box Doc's dot com. There's an extensive list of doctors who I have looked at

Kristina 48:35
that, you know, so don't think that I don't do anything on podcast related. And

Scott Benner 48:40
you're the one that said you were breaking up with me, I I'm still here every day trying to make you dinner and rub your feet and you're the one who's not sitting down on the sofa and put your feet up. I don't know what to tell you. So this is not my fault. This is a this is like a really bad breakup. I do think that's the episode title to bad breakup? Who knows? Did you find yourself ever? Hold on? I have two different questions. Let me ask this one before that one. Did you ever think oh my god, this is my fault. Like did you ever like slip into it and think maybe this person is right. Like, am I? Did you ever consider if you were difficult to I can't believe I'm using the word difficult. Like it's, I don't mean it like it's 1950. And you want to

Kristina 49:24
have no my husband would actually say that about me. Like you need to talk to people differently. Like you can't like just I just get really defensive. And like this is obviously something I care about. It's my son and I do spend a lot of time and she would essentially tell me like, well, it shouldn't take over this much of your life or, you know, I think she just wanted it to be cool. Maybe she didn't. But I think she presented that she wanted it to be easier for me that I shouldn't have to like, do so much. I'm like, This is my child and I want to do as much as I can for him. And I do have feelings of defeat when I can't figure things out. I think that that's natural.

Scott Benner 49:56
Maybe she was trying to protect you from those feelings. A little bit.

Kristina 50:00
I can't say that she was like, so concerned about my feelings. But I mean, I think as a general, I mean, she's not a horrible person. But I mean,

Scott Benner 50:07
and you're not coming on him. She's not like, like thinking like, Oh, I've got to help Christina, once she leaves here, no, right things are going sideways. Like she didn't have a feeling you were like sitting in the corner, rocking back and forth, like it like up against the wall or something like that.

Kristina 50:21
I think she was more concerned about, you know, like, safety and like, legal, like, I can't support this type of Governor.

Scott Benner 50:29
But I hear what you're saying. Yes, exactly. Well, now you have found somebody better. This is lovely. Yes. Excellent. And important, by the way, because far too many people are going to be treated in ways by doctors that are not in their best interest, it's going to be for reasons that you may often not even know about, you know, and you have to be able to kind of self diagnose the situation and have the nerve to walk away from it, or to stick up for yourself or whatever needs to be done. And also, by the way, you know, I could tell you, maybe Christina, there would have been a way you could have made this work, if you would have approached her differently. But I don't think yeah, I don't think that's fair to you. I don't think that every time you go to a doctor's appointment, you should have to be on your best behavior and wear something pretty, you don't mean like, like, and just go in there and charm her, like, You got to be able to roll in there and sweat pants and be like, Listen, I don't know why this is happening. Can you help me I need to get the hell out of here. Like, you shouldn't be in there charming people that shouldn't be necessary. I think

Kristina 51:33
I think it goes both ways. I mean, like, you know, maybe I didn't need her for more than, you know, just prescriptions. But like, when there was a question or a time when I was being a little bit more open with, like, letting someone come in, like, she wasn't able to really do that. And I needed to find someone that was you know, so sometimes it takes I guess those, you know, those relationships to end for them something new to come?

Scott Benner 51:55
Well, you know, what you're describing is just poor communication. Right? Like you came in, when you found yourself, allowing yourself to be vulnerable with her. She didn't hear you and take you at your word. She decided what was your problem, and then tried to fix it. He sure she wasn't a guy. Sorry, I didn't mean to throw guys under the bus there. But we do that a lot. So, you know, it's just interesting. She just didn't, she should have just taken you at face value and tried to meet you where you were, and help you with the situations you said you needed help with. And instead, she just decided I don't care what your problems are, we'll just change your problems to different problems that I'm more comfortable with. Or they can be someone else's problems, or will make them your son's problems and with no concern for the fact that you would have felt terrible, leaving his blood sugar higher. Their psychological impacts from it that he would have health impacts from it. This is all about making her comfortable. Yeah, yeah. And you're having trouble saying it's still even though it happened to you. Why do people do that? Why do we Why do we protect our our attacker sometimes? I don't know Scott Chrystia you didn't want to get this deep into this? See, I told you the podcast was different now. Am I better at it from your recollection?

Kristina 53:19
All right. You were great, then you're great now, right? That's

Scott Benner 53:21
that's the right answer. Good job. Any words of wisdom for people who are going through something similar?

Kristina 53:31
Oh, geez. I mean, I think you kind of just need to listen to yourself, right? I mean, I, I think I knew that. Like, you've been having the same conversations over and over and over again. I mean, we go three times a year. So you know, this wasn't anything new. I think there was just kind of a tipping point. And I guess I just thought I could figure it out on my own. And I wanted to prove it to her that like, look, I figured it out. Haha. And I guess that didn't happen for me. But

Scott Benner 53:59
that's not a healthy approach. Christina. Do you wonder listening to our conversation, your own mind? How many people are going to get divorced or break up after listening to this and be like, yeah, why am I putting up with that? Anyway, real relationships are more important to work on. To be clear, I don't want to give up so easily. Yeah, I don't want an email from somebody who was like, Hey, your podcast conversation about breaking up with your doctor led to the dissolving of my marriage. And now I live in an apartment above a pizza place. You know what I mean? So try harder and your personal relationships. Also, no lie. If this was a personal real, a real personal relationship, which obviously isn't She's a doctor, she feels like she holds some sort of sway over the situation. It's not a fair balanced, you know, relationship. But you could have just stepped back had a fight and said, Let's start over again. But you can't you can't do you can't have a knockdown drag out with your endocrinologist in the middle of a Wednesday. And then everybody go, okay, fair spare. You made some good points. I made some good points. Let's try again. You know, because that's all you needed was a resetting of the of your communication skills? Or maybe I'm being unfair, maybe she really was pushing you in a direction purposefully, but not being completely honest with you about it. So maybe not. Anyway, this is interesting. Did your husband blame you?

Kristina 55:23
I husband doesn't really do much with diabetes anymore. He can't really say anything.

Scott Benner 55:28
He lost his his ability to speak on the issue.

Kristina 55:33
I just don't think he he just doesn't do much anymore. So I don't feel he just he does what I say. Most things I'm like,

Scott Benner 55:41
look at you settling into a lovely married relationship. What do you married about 12 years? Yes. Did I get it exactly right. team this year? I'll tell you what, for anybody who thinks that I don't know people. You're 100%? Wrong. I did not know that before. Christina tell people right? Not at all. Yeah, I know how this stuff goes. Oh, my God, you're still having sex once in a while. Interesting. So interesting.

Kristina 56:06
I also did hear I don't know if it if it was on the Facebook group, or someone was talking about how you talked about that too much and more with the females than the males? And they were not happy about it.

Scott Benner 56:16
I know. And I don't agree. So if you were a guy, I wouldn't be talking about your relationship any differently. I think it's interesting. You brought that up? I think that I think that, in that specific situation, that person was an older woman. And I think it made her uncomfortable to hear a man and a woman talking about sex publicly. Yeah, that's what I think.

Kristina 56:43
But I just wanted you to know that I'm there. And I see things and so I don't want you to think I just came up on you

Scott Benner 56:48
for showing off that you're lurking in my Facebook group. Yep. Well, it's a weird flex, but I appreciate it. No, I listen, somebody actually came in and said, you know, Scott, like, overwhelmingly records with more women than men, right? Like, you know, I said, I've never seen him treat men or women differently. It was interesting. It was an interesting conversation, because I do think that in the end, that's what it was. That for some people, first of all, just saying sex out loud, in general is uncomfortable for some people. And, and that, then it's, I mean, think about it, like you're, you're a guest on the show, I have a like a big, deep voice. You know what I mean? We're talking back and forth. I'm being flippant about stuff like that. But the truth is, around 12 1314 years of being married, you're still having sex once in a while. And for those you haven't been married for 20, or 25 or 30 years, I know you're laughing and thinking, Oh, that'll never happen to me. But you're wrong. So there will be a day where Christina just walks in the room and goes, there's the guy that makes money and brings it home. And he'll look at you and go, that's the lady that does the laundry. And you'll be like, this is fine. That'll be that. And everybody can say, oh, it shouldn't be like that. But screw you. That's how it goes. So and for any of you out there who are having some magical relationship, and you're 65 years old, having sex every 35 Good for you. I'm happy. I'm happy for you. Anyway, I don't see about I can't think of anything I would talk about with you that I wouldn't talk about if this was your husband.

Kristina 58:24
Yeah, maybe just more women are reaching out. So to record and then also, maybe more women are taking care of you know, so that's not I mean, it's the audience. So

Scott Benner 58:37
what am I gonna do? Oh, excuse me. I'm not sure what happened there. Although I am sure what happened. This is the second time I've recorded today. So I've been talking way too much. Yeah, well, I'm glad you're comfortable with like, usually I asked this after the recording. But just for context here. Are you comfortable with what we've spoken about so far? You can feel free to say no, of course not. Yes. And if you weren't, I would hope you would tell me. And I will ask you after the recording ends, if you're uncomfortable with anything that we talked about, because I don't want you to be uncomfortable. And I don't want people to hear things that you don't want to hear them to hear. So, anyway, there's a part of the podcast that none of you hear that happens after it's over, where I double down and make sure everybody's okay, and we're not recording anymore. So we're not using big voices and excite you know, they mean, like, go make your own podcast, dammit, leave me alone. I'm sorry. It's not your fault. It's those fall. And actually, I didn't mind the woman bringing it up. I thought it was an interesting conversation. I think everything's an interesting conversation. So I don't think conversations just need to happen. Yeah, I don't know. I can't think of anything we shouldn't talk about. be perfectly honest. So every once in a while, I'm gonna say something that somebody doesn't like, and there's not a lot I can do about that. But what I have learned is that limiting myself makes a bad podcast and taking a risk that not everybody's going to like it. That's what makes a good one. You know, here I am. Alright, so this kid that you made that has diabetes, anything else going on with him? You got the celiac or the thyroid? Do you have anything like that any of it in your family? Husband? Extended? A unicorn? Just just the one? Alopecia? Nope, nothing? You have a bipolar uncle? Nope. Okay. That's all. I'm done. Okay. It's just a weird anomaly. How about you have other kids?

Kristina 1:00:30
I do, he has a younger sister, she's four and a half, nothing going on there. Nothing there. But I do think from time to time, you know, I'm really glad she's not the diabetic one.

Scott Benner 1:00:41
You see difficult.

Kristina 1:00:43
I just think that other years are quite, you know, interesting. She's super strong willed. So she doesn't really care if you're an adult, or a parent, like she just wants to do what she wants to do. And she thinks that that is fine. And she doesn't look to anyone for any sort of approval, or anything. So I think that because brother sometimes needs things, you know, a juice box, or gummies, or whatever, she then feels that she should get them. And I feel that though sometimes we can seem to that because they'll be fine. Yours too. I just fear that if she ever does become then we're gonna have a major problem with regulating things

Scott Benner 1:01:25
you should have let her deal with the doctor would have been terrific. If you just plop your four year old down in front of her and said, work it out with her, I'll be back in 10 minutes. She'd be like, no, no. Oh, my gosh, well, I hear what you're saying, look, I think everybody has who has multiple kids, I think it's pretty reasonable to look at their personalities and go, ooh, this would be easier with this one than that one, etc. And I'm sure there are plenty of people who in the reverse look at multiple children and think, Gosh, as crazy as it sounds, this would be way better. If it was, you know, Billy and not Veronica, you know, it's going to have a harder impact on her etc. For whatever reason, you know, what I mean? Like some people are, I mean, there are all levels of success that people are gonna have with diabetes, and a lot of it is attached to your personality and the way you attack problems. And that's not something that anyone thinks about early on in this stuff, that you have to be a head down, move forward, I can do this person. And if you are, this all goes a little easier. Get you know, if you're constantly in a position where you feel like things are happening to you, this isn't fair. This is my lot in life, I guess this is what I get, like that kind of attitude is, it's harder to get through this with for certain, I believe.

Kristina 1:02:44
I do want to say something that's kind of off track. But I think it's like a positive thing to tell people I think, littles with type one, it's just, it's harder, it's a special, like, niche group, you know, when they're that small, I think you feel like, you're never gonna get out of it, it's always going to be that hard. And, you know, they don't have the dexterity to be able to punch in the numbers correctly. Or maybe they can't read and they can't, you know, text or use a phone properly. But like, they will get there and playing being nine, I would say the last two years of this crazy pandemic, like he got to practice diabetes a lot, his best friend lives two doors down. And normally, I would just have clicked just come home, if you want a snack, if they're gonna give you something just come home, we'll enter it really quickly. But he was able to kind of do that on his own to call me or FaceTime me or have the mom kind of overlook his shoulder and kind of make sure that he was entering something correctly. And I think it just gave him so much freedom to be able to do things on his own. And you kind of just get to that space where it's like, you can kind of like breathe, I can drop them off at baseball practice for like 45 minutes early and not have to sit and stay and watch. You know, like, I kind of think that when you're in the earlier stages, you feel like it's just you're never gonna get there. But

Scott Benner 1:04:01
you will. It's a great point. It really is. The only thing I disagreed with is I loved watching baseball practice, but

Kristina 1:04:06
Oh, well. I actually I do as well. But if I need to, I understand.

Scott Benner 1:04:11
Alright, you know this. This week, marks the final few days of Cole's undergrad college baseball career. So I've been zigzagging across the East Coast driving to colleges to watch baseball games. And it's very sad. I'm trying very hard not to think about it. But a three or four days he's gonna play his last game as an undergrad. So I don't know if he's gonna go play grad ball somewhere or not. He might. But I'm up against the fact that this might be the last time Cole plays organized baseball. It's very weird to me. He's been doing it since he was four. And he's 22.

Kristina 1:04:49
And when did Arden Stop stop stop softball.

Scott Benner 1:04:53
When her shoulder started hurting, maybe she was 13 Maybe or 14 in there. I don't know. Yeah, 13 or 14, probably. She still has like a wicked arm. She could Arden could throw a ball at you and it would frighten you. So oh, that yeah, I watched my son do something on Saturday that was just, it was otherworldly how far and accurately he threw a baseball wall like moving during a panicky, like, live game situation while people were running around, and you had to throw the ball to the right place. I, I told him afterwards, if you want to go to grad school to play, I'll support that. I said, the person who just did that is I don't think done playing baseball. So we'll see what

Kristina 1:05:36
I can get so nervous watching.

Scott Benner 1:05:38
Now I don't. I have a really weird feeling about baseball. I think that you play baseball so you can keep playing baseball. And it's always a learning experience to me. And so whether he's successful or he fails, as long as he's moving forward and thinking of something new or figuring something out, or having a personal breakthrough or physical breakthrough, I'm okay with the process like he's not, you know, he's not Bryce Harper, he didn't come out of the womb like nine feet tall and ready to play Major League Baseball League. So it's a, it's a, he's been building on top of himself for a long time. I think there's been uncountable benefits that come from him playing an organized sport like this, he'll be a much better person for having done it as an adult. I just, it's a weird thing to I don't know how to put it. Imagine if nine more years from now, like double the time your son's head diabetes. Imagine, imagine if, when he's 18, you have to take everything you've learned about diabetes, for example, and put it in a box and never use it again. It only means like my son has spent the last 18 years amassing massive skills, and he might suddenly have nowhere to apply them. Yeah, it's a really weird thing. So we're hoping he keeps playing a little longer. Yeah, I mean, he's hoping I just want him to be happy, although I am gonna probably not handle it well, when he stops playing. So I fully expect to cry in front of people on Saturday is what I'm telling you. We should be uplifting for everybody. Anyway, have we not talked about anything that you wanted to talk about? Now, I think we got it all. You're sure? Because if not, we're done. Do you want to be done?

Kristina 1:07:39
Are you finished? Next time Scott.

Scott Benner 1:07:42
Are you gonna come back on in five more years?

Kristina 1:07:45
You know, maybe you want to figure out loop we can chat or you know, if I give you the next thing a whirl. I'm not opposed. But I'm also not like trying to jump on the train to get the Omni pod. I don't even know what they're calling it now. Because they keep changing the name right?

Scott Benner 1:07:57
The pod five I just spoke with someone i by the way. This isn't going to go out until after it doesn't matter. But between you and I, I can tell you and you just have to promise not to tell anybody online that I just spoke with somebody about art and getting on the pod five the other day. So that's cool. Yeah, it's coming. I can't wait to try it. I'm super excited to try everything, honestly. So I can't wait to try that. See if that works for us. If it doesn't, I mean, I'd probably go back to looping if it didn't do what I needed it to do. But I do. I do want to know and I want to find out. You know, there are a number of episodes about looping. They're called Fox in the loop house. I think they're like three.

Kristina 1:08:34
I have heard those. Yes, love Kenny. He's great. Very helpful.

Scott Benner 1:08:36
Annie is really terrific. All right, Christina, can you hold on one second, I have to stop the recording and ask you a bunch of questions to make sure you are comfortable during this. Absolutely. Thank you Well, big thanks to Christina for coming on the show and sharing that story. Love that her doctor broke up with her. Who else we thank and Dexcom makers of the Dexcom G six continuous glucose monitor please use my link dexcom.com forward slash juice box us med.com forward slash juice box or call Oteiza put the phone number away or call 888-721-1514 To get your free benefits check. Seriously, I know it sounds like a big deal to switch your person that you're getting your supplies from but us med will help you and it will be well worth your time when it's done. And of course let's thank touched by type one to remind you to go to touch by type one.org Or follow them on Facebook and Instagram. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#803 The Conversation Reveals All

Julia's child was diagnosed with type 1 diabetes at age two. This one goes in a number of directions.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 803 of the Juicebox Podcast.

On today's episode of The Juicebox Podcast, we'll be speaking with Julia. Julia is the mother of a young child with type one diabetes who is diagnosed just before their second birthday. And this conversation covers so much I can't even listed here. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And Always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please take a moment to go to T one D exchange.org. Forward slash juicebox. And take the T one D exchange survey. It's completely HIPAA compliant, absolutely anonymous, all you have to do is just join the registry take the survey takes less than 10 minutes. And once you've done that, you've helped people living with type one diabetes, and moved type one diabetes research forward right from your sofa. That's pretty great. You can do a lot without leaving your house in less than 10 minutes at T one D exchange.org. Forward slash juicebox. Alright, thank you very much for listening to that part. Now let's go to the next part. And welcome to the next part. This episode of The Juicebox Podcast is sponsored by the Dexcom G six continuous glucose monitor. And you may be eligible for a free 10 day trial of the Dexcom. Gs six, find out more about it@dexcom.com forward slash juicebox links in the show notes links at juicebox podcast.com. You want to know who else the podcast is sponsored by? Well, I'm gonna tell you, it's sponsored by Omni pod. And they make the Omni pod five, which is an automated insulin delivery system. And they make the Omni pod dash, which is an amazing tubeless wireless system. Just like the only pod five is there both tubeless and wireless. On the pod five automated dash not automated, you decide which one's right for you. And you may just be eligible for a free 30 day trial of the Omni pod dash. How do you find this out? I'm glad you asked. Omni pod.com forward slash juicebox you introduce yourself anyway you want to be known, which just really means you don't need to usual ask them. You know, if we talk about people in your life, you're free to speak about them, you know by their name, or not? Whatever works for you. Just please don't say like Uncle Billy 53 times and then at the end say Oh, I probably shouldn't have mentioned Billy's name, you know like this? Yep. Yep. Then I'll just bang my head against the desk while I'm editing out uncle Billy's for you. So that's pretty much it. So when you're ready, go ahead.

Julia 3:04
Okay. My name is Julia. I am a mom of a diabetic toddler. She's three years old and was diagnosed just before the age of two.

Scott Benner 3:18
Julie, I don't want to go off track immediately. But are you giving me your gas station voice right now? We would maybe

Julia 3:25
I have a pretty good receptionist voice from work. So I mean, I'm not a receptionist. But you know, you kind of get that voice when you answer the phone.

Scott Benner 3:34
Is that what you call it? We call it a gas station voice here. I've said on the podcast before because my wife is never as kind as she is to the person who's pumping her gas. So yeah,

Julia 3:43
yeah. That's a customer service voice. And yeah,

Scott Benner 3:47
that window goes down on my website. Oh, hello. Like, who are you? Where's this wonderful person coming from?

Julia 3:54
I'll get better when I'm not like presenting my name because I could Saffold presentation vibe. And that's a whole different voice.

Scott Benner 4:01
It was this is all staying in the podcast. So you know, I just we spoke for a couple of minutes before we started and I thought that's not what her voice sounds like. It's funny. Anyway, so Okay, so you're the one I pay attention to my job here. You're the mom of a child with type one. You say a toddler? Yeah, yeah, she's three, three. How old was she when she was diagnosed?

Julia 4:24
It was 10 days before she turned to

Scott Benner 4:27
beat me by a couple of weeks there.

Julia 4:30
Yeah. That actually was one of the things that was a big draw for me with the podcast is like when you have a two year old to his diagnosis. It's like, well, what the heck is their life gonna be like, and that was a huge comfort, like, just knowing like, Hey, your kid's a teenager and she's doing great and I'm glad. That was like really the first big thing that struck me about the podcast.

Scott Benner 4:53
I would tell her so that she knew but then she'd look at me and go or those who are your people, not mine, or something. I don't know what she would say. She's just actually she's morphing as she gets older where she's like, that's nice. She said to me the other day, I gave her a message from somebody and she said, that's nice. Thank you. And then she walked away. I was like, oh, oh, she's becoming pleasant. Someone softening what's happening? So, okay, so two years old, your daughter, any other kids? No,

Julia 5:23
she's my first.

Scott Benner 5:24
Okay. Any sensor?

Julia 5:26
No. We haven't got the courage.

Scott Benner 5:30
Yeah, I 100% know what you mean by that? How about autoimmune or diabetes? Anything like that in your family line, husband side? Or if you're?

Julia 5:41
So yes and no. So we have diabetes in our family on my side, mostly type two. But I have a grandpa and an uncle who are both on insulin as type twos. And you know how that goes. Like? They could have just never been tested for type one. You know, they're on insulin. I don't know.

Scott Benner 6:04
Well, yeah, that could be insulin dependent type twos as well. But were they for a long, long time using insulin? Is that what you're saying?

Julia 6:10
Yeah, I think they've been on it for a long time. And like my one uncle, he's pretty thin, he doesn't fit the type two characteristics, you know what I mean? So just the idea that, you know, he's type one, or type two on insulin, you know, it's just kinda a little fishy. But, you know, we're not that close that I've ever really dug into it. Like, are you sure you're tight to

Scott Benner 6:33
now that you're speaking more you live near a large lake in the north part of the country? Is that correct? The Midwest? Yeah. How could a person lived their whole life thinking they had type two diabetes and only have an have type one and no one say anything?

Julia 6:51
I, you know, I don't know. But you know, you hear more now that I'm more involved in the diabetes community, you hear more and more of that, how it kind of goes on for a while, and they're like, well, we'll start using insulin because, you know,

Scott Benner 7:03
does he do well working out? Does he do well? Or does he struggle?

Julia 7:08
A lot of lows? Lows? Dangerous lows?

Scott Benner 7:14
Well, I'll tell you what, I might bet that he's type two, just based on what you said. I don't know. I don't know why. Just, I get a vibe. That's all. That's what the podcast is down to now, Julia, I just gonna sit here. And when people speak, and they stop, I'm gonna go, I get a vibe that That's right. I don't know how long it'll be interesting. But that's interesting.

Julia 7:35
Yeah. And then other than that, I mean, my husband's sister has, what I'm told is auto immune asthma. But I don't know how they know if it's regular asthma or autoimmune asthma, if that was ever tested. And then my mom has a little bit of autoimmune stuff, too. So there's auto immune in the family. And then I had gestational diabetes, which I hear there might be a link to that, too. I don't know. So I mean, there's little bit of links there. Like I'm semi familiar with diabetes, but not really type one. And yeah,

Scott Benner 8:08
okay. Well, interesting. Thank you for setting the table for us, and letting us know what's going on. So when your daughter is diagnosed it to her it's only a year or so ago? Was that right? Yeah, almost a year and a half year and a half? Do they start you off with? I mean, now that you hear other people's stories, what did you have one of the good experiences where they're like, Hey, here's a CGM and pens or a pumper, they like take these needles and go suffer until six months has passed by what did they? What did they?

Julia 8:41
I mean, it was kind of kind of a typical experience in terms of what you would expect, we got syringes, I don't know why, but I have no idea how to use a pen. So we started out with syringes and stuck with them, which worked out because she ended up going to diluted insulin where we would have had to do syringes anyway. And they didn't start her with a Dexcom at the hospital because she wasn't quite to yet. And they said the approval process with insurance will go faster if we just run the paperwork when she turns to. So we were without a Dexcom for a couple of weeks. But that wasn't you know, a huge deal, because our honeymoon hadn't started yet. And we didn't know what she was doing. We were doing so she was high all the time anyway, you know, but it was a lot of that don't die advice. Like we didn't get the good advice right off the bat. So, you know, what did you maintain carbon uncovered snacks type of stuff.

Scott Benner 9:34
Yeah. So real quick, though. What did you mean, the honeymoon hadn't started? Did she have a honeymoon?

Julia 9:40
Oh, yeah. So that's actually why I reached out. I kind of wanted to talk more about that because she has had one heck of a honeymoon. She went off of insulin for a while. She went back on it and it's been kind of spotty since then, and we've just had a lot of honeymoon type experiences and I thought,

Scott Benner 9:59
you know what's interesting now?

Julia 10:01
Yeah, and especially since she's so small, like her insulin needs are low anyway, like, she's just kind of a really interesting case to talk about.

Scott Benner 10:08
So at two years old, how much insulin was she getting a day?

Julia 10:14
She was getting about a unit, right after diagnosis.

Scott Benner 10:20
And would you give it to her as basil, and nothing else? Or were you giving meal insulin.

Julia 10:26
So we started out with, you know, a couple of units of Lantis. And very quickly started to take that down, and she went to a half unit for a while, and she was getting meal insulin, but it was really tricky, because, you know, her carb ratio towards the beginning, you know, kind of landed at like one to 30. And so if she didn't eat enough, we couldn't give her insulin, and they had us dosing afterwards. And it was just, it was a mess. So it was one of those like, Okay, kids, like at one point, like, they said, Oh, she has to eat this much. This many carbs to get any insulin. So I made her like a giant bowl of mashed potatoes. And she didn't finish it. You know what I mean? Like, okay, you're one finish this so I can give you a

Scott Benner 11:11
way, because no one wants a giant bowl of mashed potatoes. Is that right? Yeah. And

Julia 11:15
I mean, I like sprinkled ground beef on top and put some tiny little shreds of broccoli on there. So it seems balanced. But I'm like, you're pretty much gonna have to eat a bunch of mashed potatoes for this to get done.

Scott Benner 11:26
You're from the Midwest, you're like, potatoes, we'll put some beef on the top of it. And let's kill something in the backyard. We'll throw that on there, too. And you're gonna love this. It's, listen, first of all, that sucks. Because, you know, because I'm assuming what happened was somebody said to you, that this many carbs is the least amount that you need to cover this amount of insulin, which is probably the smallest amount of insulin you can give her. Yeah. Okay. And if you tried to cheat when she got low,

Julia 11:56
um, yeah. So, as her honeymoon started, it was kind of nuts. Because, you know, we were, you know, dramatically reducing our doses and whatnot. And she was just, we had her on like a half unit of Lantis. And there was one day, I sent her to school, like I was going to, you know, try and get her to get this big breakfast out. And I thought, Oh, she didn't finish it. So I can't give her the insulin. And so I sent her to school. daycare, it's a nursery school, actually. But um, I laid it out for the insulin for breakfast.

Scott Benner 12:32
I didn't think she was like a prodigy. I didn't think she was 10th grade or something. Like,

Julia 12:38
she might be a whole different thing. But so I sent her to daycare and like, alright, well, she's gonna be high. Like, I don't know what to do. And so she but she spiked to 180. And she's just like, she felt did a fall rate alert down. And she was just like crashing and I'm like, Okay, well, if she didn't have insulin, for this amount of food, and she just has her Basal on board. That was like, finally enough to explain to her like endo team. Hey, this insulin is way too much for this child. Like, because I talked to them before about, you know, I think Lantus is too much for them. Like what? And they're like, no, no, you can't take her off the Lantis. She'll go into TK. Like, like, I

Scott Benner 13:24
think this kids making her own insulin here. So yeah. And

Julia 13:27
like that was finally enough to for them to say, oh, yeah, we have to take her off of insulin. Because if that was just that the Lantis Yeah. So she went off of insulin for like two months after that. And it was amazing. And I feel like we should have took more advantage of it. But

Scott Benner 13:44
more advantage of it by like, going out to dinner and things like that.

Julia 13:48
Yeah, that kind of stuff. And you know, actually maybe getting a babysitter, you know, because you don't have to worry so much.

Scott Benner 13:54
Like, I should have gone out, Scott. That's what I'm saying. I should have.

Julia 13:59
I should have exactly. But like I had a newly diagnosed diabetic child, like I wasn't going anywhere.

Scott Benner 14:05
That's very interesting. And that's a lot of insight to just I should have just taken some free time when it was there. So two to four months without insulin at all. Yeah. And was she wearing the CGM still? Yep. Okay. And what did you see?

Julia 14:22
So it was kind of fascinating. So she would, you know, spike up at meals, she would get, you know, maybe 180 At the high end, and we weren't eating very high carb, but we're not a high carb family. Anyway, my husband does keto. You know, since I had gestational diabetes. I don't eat a ton of carbs anyway, so you know, she was eating pretty balanced meals. But she wouldn't get that high. And then actually, the interesting thing is before meals if she was starting to get hangry her blood sugar would crash to like 55 When I was getting food ready.

Scott Benner 14:54
Yeah, so it was taking notes taking no manmade insulin but wearing a CGM. So You could see her blood sugar getting low as with the meal approach, so she knew dinner was being made.

Julia 15:06
Yeah, something I mean, I don't know. But she was angry about it. Like, she was like, give me my damn food. You know,

Scott Benner 15:13
Jenny told me one time that the body in a, in a person who doesn't have diabetes, as it is, as it anticipates I got I hope I'm remembering this right that you're going to eat that it starts to lower your blood sugar a little bit,

Julia 15:26
huh, like even think it would lower it to 55. But yeah,

Scott Benner 15:30
definitely wouldn't think that. But I also know people who get low blood sugars. And, you know, I mean, that's some sort of dysregulation of their insulin, you know, people who don't have diabetes. I mean, who get let's just say unpleasant when they're hungry. You know? How's that? Is that a nice way of saying? People? Yeah, nasty. Like, I'll tell you that for years is a standing rule in this house. My son does not like to have food in his stomach when he's playing baseball. So when the baseball game ends, you don't really talk to Cole until Cole eats? Like, Oh, yeah. He's singularly focused. Sort of like a lion. You know what I mean? Like, I he needs to eat when he's done. Sure. Yeah. Interesting. Okay, so scary, comforting, sad. What's it feel like when someone tells you that your kid needs insulin? She has type one diabetes, and then all of a sudden it goes away for an extended amount of time? Did every day just feel like this is probably the last day or were you happy about it? I'm trying.

Julia 16:35
So I was really relieved that she was going off of insulin. But honestly, it took her endo some talking me into it because her nurses had me so scared about going off of the Lantus, you know, right, exactly. And it's like, okay, that's a valid point. Except if you realize, like that I'm giving my kid to juice boxes overnight to keep her numbers, you know, between 80 and 110. You know, and I'm basically spending my entire night juicing my kid, like, there's something wrong here. Like, she doesn't need that. So once I mean, the doctor, and I really talked about it, I felt okay. And then it was a huge relief, because, like, even at daycare, when she would like have breakfast, and you know, she would be dosed right after breakfast there. And she would go outside and play. Like, she would just be fall rate alert the entire time. And she dropped by like 40. And when reading, and it was terrifying. Yeah. So I mean, it was it was a massive relief to be going off with insulin.

Scott Benner 17:36
Yeah. Or at least for things to regulate a little bit, right. Like just to like, I mean, now that she's back, she's back on insulin now. Is that right?

The Omni pod five automated insulin delivery system is here. It is the only tubeless automated insulin delivery system that integrates with the Dexcom G six, and it uses smart adjust technology to automatically adjust your insulin delivery every five minutes to help protect you from highs and lows. And of course, as a bonus, no multiple daily injections with on the pod on the pod is this little device. It's so I mean, it's small, and you fill it with insulin and put it on and then tube lessly. And wirelessly, it delivers insulin to you. Now if you have the Omni pod five, this automation is amazing. Using your Dexcom G six data, the Omni pod five, it says to itself, I don't know exactly how it says that this is not technical. I mean, not that I think you believe that the pump is just saying like talking like a person. But alright, anyway, what I'm getting at is it sees your blood sugar going up, it tries to stop it, it sees your blood sugar going down, it tries to stop it, it's trying to keep you in a range. That's amazing. And something you should be looking into Omni pod.com forward slash juicebox. Here's the really cool thing about Omni pod five. It's not a durable medical device. And so that means the Omni pod five is available through your pharmacy, which moreover means that you can start with it right away. No four year Durable Medical Equipment contract, like with some of those other insulin pumps. And this is even if you're currently in warranty on a different system, you just should give it a try. Omni pod.com forward slash juice box. Now for full safety risk information free trial terms and conditions. You can also go to omnipod.com forward slash juicebox. But Scott, you say you didn't mention a free trial? Well, that's because I was talking about the Omni pod five. But now that I'm going to come over here and talk about Omni pod dash, did you know you may be eligible for a free 30 day trial the Omni pod dash, that's the truth. You should head over and check it out at the website Omni pod.com forward slash juice box. So whether you want the Omni pod five and that automation, or you're just looking for to Bliss and wireless With the Omni pod dash, Omni pod has something for you. Before we get back to the program program is what my grandmother would have said, when she was watching television. She'd say I'm watching my programs. So anyway, next time you make fun of how I talk, just remember, I'm a product of my upbringing. But before we get back to the podcast, let me tell you about the Dexcom G six now, I'm gonna go right to the website, dexcom.com Ford slash juicebox. When you get there, here's what you're gonna see. There's a little bit of text at the top, it says make knowledge your superpower with the Dexcom G six CGM. That's how you'll know you're in the right place. Now if you know you want the Dexcom right now you don't want to mess around on the site. Click on the Get Started with Dexcom G six button right away, it's green, you'll be able to see it. Don't you work. If you want to know more than maybe you bounced around the site a little bit. Find out about how you can get readings right on your smart device like an iPhone or Android. How you can customize your alerts and alarms. Read more about zero finger sticks. Or just listen to this and then go get a Dexcom. Right now Arden is home from college. She has a sinus infection. It is vicious. She needs a lot more insulin than she's needed in the past. And we've been comfortable giving it to her because we can see her blood sugar in real time. This has been going on for days. But guess what just happened about an hour ago Arden's fever broke and her blood sugar started to fall. So we were able to jump into action. Remove all that extra insulin, stop the fall with a little bit of juice and level our blood sugar out. I'm looking at it right now. At 76. You go ahead and try to do that without a Dexcom it ain't easy. dexcom.com forward slash juicebox. You may be eligible for a free 10 day trial, the Dexcom G six. Do yourself a favor and go find out at my link.

Julia 21:59
Yeah, yeah, she was only off for a couple of months. And it didn't take long after she was awesome. fast acting to go or after she needed her fast acting again for her to need Lantis again, too. So she kind of pretty quickly over the course of a couple of weeks went fully back on insulin.

Scott Benner 22:22
How much does she weigh when you were found yourself up at night feeding basil? She was about 30 pounds. 30. Wow. Okay, that's not nearly as small. I mean, that's don't get me wrong. That's very small. But it's not as small as I was imagining. So no, no

Julia 22:36
mid class babies are bigger babies when

Scott Benner 22:39
you're sprinkling ground beef on top of your roots. You have to you have to expect Midwest babies are big babies, are they? Do you ever see a baby that's a little smaller and think, oh, there's something wrong with it. They don't give it ground beef.

Julia 22:55
So I guess so this was something my OB told me is that, you know, the national average Baby's like something like 6.5 to 7.5 pounds or something. But the average baby in our area is more like eight plus pounds.

Scott Benner 23:09
Do you think that's because of the deep fried Oreo cookies at the fair? Or?

Julia 23:14
I mean, maybe we do eat a lot of cheese curds.

Scott Benner 23:19
Do you listen to this podcast with any frequency? Yeah, yeah, a lot of them. Yeah. Okay. I was wondering if I've ever told anybody about the time my sister in law came from Wisconsin at the holidays and brought what she called caramel corn. Except I do think I told this except it wasn't popcorn covered. And Carmel. It was like those. I don't even know how to explain them. Is it popcorn? Yeah. Yeah, like and it was just it was this. I don't even know how to put it like in your in your potato chip aisle. There are these things that they call like popcorn, but they're they're really more like styrofoam peanuts, if I'm being honest, right, like inconsistency. And she had somehow soaked those in a sugar substance and then put caramel overtop of them. And when one went into your mouth, your teeth hurt. And my brain felt like it was going to explode. And she's like, Oh, I make this with my mom at the holidays. Like it was a tradition for her. And I pulled my brother aside. I was like, Yo, man, she's trying to kill you.

Julia 24:24
I was like, grandma makes us two. They're they're good. But yeah, a lot of sugar.

Scott Benner 24:29
Like, I don't think that's food Brian, don't eat that. So anyway, yeah, that was something I'd never seen in my entire life. You know? Wow.

Julia 24:39
Even just your description of popcorn is kind of

Scott Benner 24:42
just like packing your packing peanuts. That's what they seem like to me.

Julia 24:46
Yeah, no, that's that's accurate.

Scott Benner 24:49
So I'm saying you shouldn't be able to describe food as packing. Yeah, that's valid. Also in a world of Amazon. Do people even know what packing peanuts are anymore? You know what I mean? Now everybody just gets a little like air pocket or something in their bag. I don't know. Now. It's been a while. Yeah. And now we're getting into shipping. And I think we that's too far off the topic. So well, did you? When did you have to start diluting insulin?

Julia 25:17
So we had started that right before she went off of insulin. Because they tried that first and apparently, like we go to a good size clinic, but she's like one of two patients that they've had that had diluted insulin. So I thought that was kind of interesting. But yeah, she started that right before and that was you, 10. And we just, they did it straight at the pharmacy. So they did the mail order pharmacy thing for us and just shipped it to us. So we didn't actually deluded ourselves. I hear some people do,

Scott Benner 25:50
like, Dr. Frankenstein, they're just working at their kitchen table, but you got it. Okay, so how does that? How does that work? So I am so I am so scared to talk about this. Because every time I see diluted insolent spoken about people, either there are two forms of understanding about how it works, and nobody's ever certain. So do you know what I mean by that? Like one unit equals? Oh,

Julia 26:19
yeah. So you 10 Is 10% the strength of you? 100. So it's like 10 parts. Insulin is what the like, compound is, it's, you know, 10 parts, insulin, 90 parts, the compounding, whatever it is

Scott Benner 26:37
that you're that. So So basically, you're diluting the insulin, so that it's measurable. Because it's because it's difficult to measure insulin, right? So when a tiny, tiny amount, so you can draw a unit, and you are really getting a 10th of a unit of strength, but a unit worth of liquid.

Julia 26:58
Exactly. Okay. Yeah. So that's really nice. Because you know, if you don't have a pump, you can do you know, half unit so you can get a point five increment. So like, if we were bumping and nudging her we do a lot of point oh, five units for

Scott Benner 27:12
her. So so if you needed if you need her ready, here we go. If you needed point, oh five for her. How much actual diluted insulin like how much? At half unit? A half a unit of liquid was actually point oh, five of insulin. Okay. So a full unit is, of course, one to 10. So you get point one. So if you needed if you needed a real unit of insulin, and you were using diluted, you actually had to use 10 units of liquid? Yes. Okay. Did that I'm assuming never happened with her at that size, right.

Julia 27:48
So there was a point when she needed about, like, if she was sick or something, I would give her eight unit. So it'd be like point eight, and diluted insulin has to be refrigerated. So we're injecting eight units of cold insulin. So that would really hurt. So that was really unfortunate. And that was actually the reason why, like as her insulin needs went up, we started to push to get a pump, because like we needed to do something different. Because, you know, she doesn't mind the pokes. But poking with larger amounts of cold insulin, that hurts.

Scott Benner 28:23
Yeah, the big Bolus isn't that it's cold on top of that. Yeah. So this is the moment where if you're listening and you don't understand you should say to yourself, my fifth grade teacher let me down. Because I see these icy these conversations. They happen about twice a year in the Facebook group where someone wants to talk about deluded insulin. And people get so confused. I mean it and the conversations happen exactly the same way. I've watched them a half a dozen times in my life. That starts with someone saying, oh, you know, we're using we were using you 100, which is like basically like your standard strength insulin, right? Like one, one to one. But now we're using diluted. So when my kid needs a half a unit, I actually inject this much and unit and unit. It just fries people's minds. And then when they try to explain it, it goes off the rails. Just it's masterful, how bad it gets, the conversations just devolve, and then somebody thinks you're going to hurt somebody, and then the panic sets in. Every time every time Julia,

Julia 29:35
you know, and it's always kind of a confusing thing when we update her charts at her endo appointments because they always log it in you 100 So I'm sitting here like, Okay, how do you want me to tell you this? And it's like, okay, she's having a one to five ratio. So it's one to 50 on your charts, you know? And it just makes for a confusing conversation. Yeah, yes. It's ridiculous.

Scott Benner 29:57
It's the interesting thing is that you don't Think of. Most people don't think of insulin as being in volume measured in volume, although a unit is a volume of measurement, right volume is how we measure liquids. We think of a unit as power for some reason, because we, you know, oh, sure, right, one unit per 10 carbs that its power, it's, you know, I ate 10 carbs, I need a unit of power from this insulin. And so when you start talking about it in volume, but in the same breath, thinking about it also empower, which is, you know, if you're using, what would you say you 10? Yeah, so you're getting point one per unit. So for volume, you're getting a unit of liquid. But for power, you're getting point one or a 10th of that. And that is just when it goes off the rails in conversation for some people.

Julia 30:50
Well, and the other thing is, is they tell you with deluded insulin to roll the vial a few times before each time to make sure that it's properly mixed. So you don't know 100%, that you're getting that perfect dilution either, with each draw,

Scott Benner 31:06
still a little bit of a crapshoot a little bit.

Julia 31:09
But you know, we never really saw issues from the inconsistency. So I don't know if the rolling it was just like an old school precaution. You know, I don't know if it actually becomes like a homogenous mixture or not.

Scott Benner 31:23
Well, it's, it's weird. How long did you do it for?

Julia 31:28
Well, she still actually gets the diluted insulin, like as a backup for her pods, because we can't give her that big of doses generally. Anyway, still. But we did diluted insulin for a year. Well, almost a year.

Scott Benner 31:44
Let's talk about that for a second at her at her current age. What does she weigh now?

Julia 31:49
She's nearing 40 pounds, she's maybe 3940 ish.

Scott Benner 31:54
So do you think she's still honeymooning to some degree?

Julia 31:57
At you know, I'm kind of back and forth on that. It's hard to say because her Basal rates some days goes down 2.05 an hour. But when she first started on our pump, she was at point o five every other hour.

Scott Benner 32:12
What proper using Omnipod? Are you gonna try on the pod five?

Julia 32:17
Yes, but I'm a little hesitant if she's ready for it yet, because her Basal needs are so low, that I worry about those algorithm pumps, you know, being able to give more but not being able to take enough away?

Scott Benner 32:31
Well, it could it could. Alright, so I don't know for sure. I mean, the loop can take you down to zero. So I wouldn't

Julia 32:38
I think Omnipod five, probably can because dash could?

Scott Benner 32:41
I would think so. Yeah, I don't think that would be your concern. I mean, as a matter of fact, I, I can't say for 100% certainty. But as I sit here and apply my common sense to it, there's no way that any of these algorithms can't completely shut off insulin, they have to be able to do that.

Julia 32:57
Well, right. They can but okay, if you're getting point oh, five an hour. Like sometimes it might be 55 minutes before you're taking away that point. Oh, five.

Scott Benner 33:07
I see what you're saying. But well, because once an hour with the algorithm be able to see that far into the future to know that I think it would be able to interesting, I think

Julia 33:16
it depends on how fast of a drop, but I mean, at a certain point, you're doing juice anyway. I don't know. It's

Scott Benner 33:21
the she's still fall very quickly.

Julia 33:24
She's getting to be much more stable. I mean, she's not super stable, like she's usually kind of drifting down most of the time. But it's not like rapid crazy drops, usually unless I was getting a little law. heavy handed,

Scott Benner 33:41
right? You know, the entire time you're talking. I feel like we're in the movie Planes, Trains and Automobiles, and we're at the bus station, and I'm eating John Candy for the first time.

Julia 33:50
Is it my accent? Yes, Your

Scott Benner 33:51
accent is terrific.

Julia 33:52
A lot of people say I sound Canadian. If I ever go to the East Coast, everyone, you know, accuses me of that. Which is funny, because I've had people around here ask if I was from the East Coast, but my dad was in the military. So when I was learning to talk, I lived in Virginia. So every once in a blue moon, you'll catch a little bit of twitching or something going on. Yeah, but

Scott Benner 34:14
it's blended. Actually. Anyone who would say Canada is not a connoisseur of people's accents. There's no sure I don't get Canada. I get Chicago more towards Wisconsin is what I get.

Julia 34:27
You are right in there. Okay. Uh huh.

Scott Benner 34:30
I love this podcast I get to do I get to do so many fun things that I don't think anyone else thinks is fun. But me, but I love listening. I can hear I don't know. I just feel like we're in the bus station. I'm I'm the mom from home alone. And, or something. I don't know what's going on. Exactly. I have a lot of pictures in my head right now. But I'm having a good time. So can I ask When insulin needs are this specific and dangerous? I mean, honestly, if you use too much ate? Yeah. Is it just you who takes care of it? Or, I mean, you haven't said you're married though, right?

Julia 35:06
I am. So my husband, he does like short spurts of taking care of her. Like if I need to run to the store or something like he can keep her stable and safe. But in terms of like giving her insulin, he usually like checks with me first. And you know, checks like carbs and whatever else. But like at daycare, it's kind of a weird situation. So when we started back to daycare, because she had already been going there, she, they weren't going to be trained on doing the insulin injections. But then they discovered how sensitive she was. And they thought it would this is a giant liability for us. And like, nobody was comfortable with giving her insulin, which, you know, in hindsight, I completely understand but at that point, I'm like, okay, you know, Ada guys, you know, like, you have to accommodate my baby. Um, but and, you know, like, the, the owners, the husband is diabetic, too. He's type one. So, like, they have all the compassion in the world for type ones. But, you know, that whole idea of, oh, we might kill this kid, you know, was pretty real. So I started doing it myself, like, so she would have uncovered snacks morning and afternoon, and I would dose her on lunch. But it was a lot easier because we live like four blocks away from the daycare. And I was working from home because of COVID. So it was really convenient. Like, I could be there really fast. So I mean, I handle pretty much all of her insulin needs for the most part, but then other people are trained on like the safety aspects of okay, if she needs a finger prick. But daycares thing is they also get really busy, like, you know, it's two teachers, 12 kids, and there's a lot going on. So most of the time, if she's starting to go low, you know, they kind of bump and nudge her a little bit like looking for, you know, like one tiny little cookie like an animal cracker size thing to keep her from going low. But if she's looking like she's actually going to go low, I go over there.

Scott Benner 37:12
Okay. How old are you Julia?

Julia 37:14
I am 34.

Scott Benner 37:17
Okay, because it's your story. I mean, you could be anywhere from, you know what I mean? Your early 20s, like your first kid to, you know, to older but your voice because of the Midwest thing. Like if you told me you were 53 I'd be like, Okay, I believe you. So I knew I knew you weren't sound I couldn't I couldn't nail it down. So I'm like, I'm like, I gotta ask. So

Julia 37:39
you're gonna make me a little self conscious here? No, we, we kind of got started late with having kids. Because I we had some fertility issues. And then, yeah, so it took us a while to have her and then, you know, she ended up having a lot of issues.

Scott Benner 37:54
Yeah, no, no, I completely understand. It's not. And by the way, I don't mean like, you sound like my grandmother. That's a relief. Just saying that. Like, there's something about this specific accent, it stops you from dating somebody as well, like, you don't even like, I don't know, how am I going to put this like, there are blonde girls in New Jersey, there were 27. And I can tell they're 27 When they speak three words. But you're like you have like a more mature cadence? Is that what I mean? I think so.

Julia 38:21
Well, yeah. So there's that. I mean, I'm an older Mom, I'm also an architect. And, you know, so there's a lot of, you know, professional stuff going on. And yeah, just

Scott Benner 38:32
like get a more measured experience. You guys, you guys one day, I'm going to I'll record one of my like, like a business meeting I have with an advertiser or something like that. And, and you'll be stunned that I'm not any different in like, my professional life than I am when I'm making this podcast. As a matter of fact, when when companies reach out, one of the first things I say to them, like us met as a sponsor now, and I'm on a phone call early on when they're interested in being advertisers. And I said, Look, just you need to know right now. This is me, I have no ability not to be the person you're talking to right now. So if you need somebody to like, shine this up for a meeting, or, like, just we should probably skip it, because I can't I can't do that. I was like, I am only this person. So I have no like, professional veil that I can throw over myself. My wife is always like, telling me you would get fired at my job in like three minutes and I'm like, No, I wouldn't. They would love me and she's like, you would get fired.

Julia 39:38
You know, I wonder if how much of that is the nature of your job not being in like a corporate environment, too.

Scott Benner 39:44
I also I just don't care. But I think that's part of it. Like you're an interesting story would be by the time this comes out if Yeah, okay. Especially if you just don't say this out loud. We'll be okay. Is going to be a sponsor of the podcast pretty soon, a couple of weeks. Nice and And I had to get on its own. And they're they're very, like it's a very professional company. You don't I mean, like they're just it's a it's a professional setup when you're when you're dealing with people and I had to get onto a call with like four or five people. And I was getting a little pep talk from a friend of mine who used to work at EPA doesn't work there anymore. And I was I was just chatting back and forth with her and I was like, I, you know, I've got this meeting coming up, it seems like a real adult meeting. And she goes, Don't curse. And I'm like, I'm like, I won't. She goes, No, Scott, you will. And I was like, why don't you just you curse in every meeting I've ever been in with you. And she's like, it's delightful. And nobody cares. She's like, but they're new. And this isn't the setting. And I was like, Okay, so like an hour later, I get a text from my friend. She goes, How did it go? I said, oh, a wink rate. They're gonna buy ads. I only said twice. Oh, my. She's like, how did that happen? I was like, I don't know it. Just the word really fit the situation.

Julia 41:06
You're just you're you're building rapport, Scott.

Scott Benner 41:10
I know. But I do it right on the razor's edge, like even my wife's like, Could you start with like shit or something? First? I'm like, No, I was like, it's not important. Anyway, it's, it goes back to. I think when I was like, 20 years old, I was sitting in a diner with my friends. Like it two o'clock in the morning, we're having one of those like, you know, conversations we thought were existential for our, like, 20s. And I just came off and said, like, I think you can say anything to anyone. If you say it correctly. And they were like, No, that's not right. And one kid, like put $20 on the table, and then said the most like, a pourraient word he could think of and he said, work that word into a conversation with the waitress without her getting upset. And I'll give you $20. And it didn't go well. Julie, I'm not really poorly, I did not think it through as nearly I thought my delightfulness would buoy the situation. But that wasn't quite enough. And it's the hold. It's funny back, I said, Give me two more chances. It was like, give me the best out of three. And I did work it out. Eventually, we actually, on the third try at a different restaurant, you know, at a different time. I found a way to slip a word and that just shouldn't be in polite conversation. And, and the person rolled with it. And it wasn't just because I know people are like, well, they're waitresses, they smile at everything. They don't want you to be upset. They're trying to get tips. Trust me, it worked. And, and since then, I like to say that I could tell you that your dog died. And that I killed it. And when it was over, you would thank me like that. Like I'm good at that. Like that. Like and it's not a thing you do. It's just the way of being I guess. So. Anyway, yeah, I said twice in that meeting with the people. Which I'm sure they're not thrilled that I'm saying right now. But anyway. That's funny. Yeah, we're gonna sell. It'll be fine.

Julia 43:04
Those did seem really nice. I was kind of bummed. I wasn't offered one. Like, you guys are giving me syringes. But then when we got to dilute it, it's like, yeah, okay. It's a good thing. I know how to use syringes.

Scott Benner 43:14
Do you know I've never used an insulin pen in my life? Really? Never. Not once. Oh, wow. Arden went from syringes. Right to an omni pod. Wow. Yeah, I used syringes for two years old, three years old. Part of the time she was four years old. We got her onto an on the pod before kindergarten started because I didn't want her to get because back then here was my thought process. I didn't want somebody I didn't know sticking her with a needle. So yeah, that was the entire reason I got a pump. That was it.

Julia 43:48
So it was already in good with the pokes.

Scott Benner 43:50
Oh, you know what? I never thought she loved them. Like don't get me wrong. When she was real little two years. She she'd run. Like, she'd see that she'd see the needle, she'd get a big smile on her face and turn around and run away. It wasn't much of a chase as she was two years old and her legs were very short. But she still put an honest effort into it, pick it up to get away. So I've had to, I've had to like hold her once or twice to give her one but for the most part, she was okay with it. The thing that I remember, I guess most strongly from that time, is that I was always so worried that this would just be some terrible thing that was happening to her that she'd never forget and it would just scar her. And, and I know I've told this before so just in a couple of sentences. After Arden switched to Omni pod, we just didn't have any problems with Omni pod. Like for the longest, longest time and years later, I had to give her like a clearing shot of insulin like I needed to give her an injection. And I pulled it out and like was filling it up and she goes what is that? And I said it's a needle and she goes for What? And I was like, I gotta give you some insult with issues. No, no, no, no, hold on a second. You know, and then, and then literally as we're talking about it, I come to realize, I probably stuck art in 10,000 times as an as an infant, like, you know, as a toddler. And just a couple of years after she stopped getting injections, she had no recollection of needles whatsoever.

Julia 45:25
Wow. Yeah. That's crazy, isn't it? It

Scott Benner 45:28
blew my mind. Like really genuinely did.

Julia 45:31
What really gets to me is Cora, she would like she got pretty desensitized to the needles pretty fast. And, like on bad days, you know, I might give her 10 little minor adjustments throughout the course of the day. So you know, that's 10 Different pokes. And, you know, at a certain point, she got to the point where I'm like, it was time to eat. And she would say, Mama, you didn't give me my insulin. Like, dude, I gave it to you, like five minutes ago. Like, that's how little she was starting to care about them. It was kind of crazy.

Scott Benner 46:00
Didn't even remember. Yeah, just because like,

Julia 46:04
yeah, and I mean, now, now that she's been on the pod for a couple months, she's, if I try and give her an injection, she kind of gets mad like, but then, you know, I give it to her. And she doesn't make a fuss about it. Like it doesn't really hurt her, but just you know,

Scott Benner 46:19
yeah, Kelly has a t shirt that says that. That's, I don't want to poke. Okay, that was the most Midwestern, pregnant pause that virtually she's like, I don't understand. Where's the sexual innuendo going? It says you're so lovely. Thank you for coming.

Julia 46:37
I wasn't I wasn't totally confident that that was an innuendo. We're not I was like

Scott Benner 46:44
wait, the wife doesn't have diabetes. I don't understand. She actually has a sign. It's on the side of the bed. It's

Julia 46:52
Oh, yeah, that that seems more appropriate. From what I've heard about your wife. She doesn't seem like someone to wear out in New Window T shirts.

Scott Benner 46:59
She's got it. She's not a t shirt slogan kind of person. I love that. That's where your brain jump to. That's great. She wouldn't. wouldn't wear a shirt like that. Hold on a second, while ardent? Can I just text ardency quickly. I am recording. Can we talk about this? In 30 minutes. here's the here's the text. So Arden is eliminating gluten for a month. Almost done. The honest truth is, I don't know if it's helping or not. We're having trouble telling. So I guess maybe if you're having trouble telling maybe it's not helping. I'm not sure but I get this text right. I want five guys. Next text. Oh, wait. I can't. I said no. You can just no role. She goes if there's no role, then I can't. Also I can't have a milkshake. Because she gets cookies in the milkshake.

Julia 47:58
Five Guys has a gluten free banana.

Scott Benner 48:01
Hold on. Person I'm recording with says five guys has gluten free bonds. All right. Talk soon.

Julia 48:22
I mean, I'm not 100% confident in that, but I'm like 90%

Scott Benner 48:26
We'll find out also this is what this text is really an indication of an any of you ladies of a certain age will know is that today is the first day of Arden's period. Ah, she's she's sitting in school going, I would like to get french fries. That says planning

Julia 48:41
her food in advance. Yeah.

Scott Benner 48:45
Exactly what's going on? Textbook.

Julia 48:48
So that is actually a good segue for the like last thing I need to talk about. So we kind of talked about like the first half of her honeymoon. And the second half got just kind of weird. She was diagnosed with celiac in November. And the reactions with that in our honeymoon were nuts.

Scott Benner 49:09
Tell me about it. Because I didn't know this. Was this not your notes.

Julia 49:11
It was not because I sent that out and then like, I don't know, two weeks later, we ended up with celiac stuff.

Scott Benner 49:18
No kidding. Okay, do tell how long again, on this podcast ever go like, Oh, my kid has celiac. And I'm like, oh, intrigued.

Julia 49:28
Well, I was wondering how we were gonna segment that because I didn't want to miss out. Um, so she you know, after diagnosis, you know, she we were eating lower carb stuff, so a lot more berries in their diet and whatnot. And she had just had the celiac screening at diagnosis. So, like, looser stools I wasn't really worried about like, Okay, well, it's a little bit looser, but it's not like crazy. And it's just like never like really solidified. Totally. I know kind of girls to talk about, but

Scott Benner 50:00
No, that's fine.

Julia 50:03
Well, you know, I have a toddler, and poop is a big part of my life. Um, and then, so it got worse, like this fall. And then I was starting to worry about celiacs because I know that was kind of a big relationship with type one. But then she was having this thing where at night before bed, like, she would always ask for snacks. And I would give her a small snack thinking okay, like this is about how much I can get away without without completely screwing up your blood sugar for the night. And she was just whining about being hungry. And so one night I'm like, alright, well, I'm just gonna feed you literally everything you want here. So basically fed or the kitchen and she's still saying I'm hungry. And I'm like, you can't possibly be hungry. Turns out she was getting tummy aches, and she was mistaking them for hunger.

Scott Benner 50:53
You're like, hear this will fix that. More food. Yeah, so

Julia 50:56
she's, you know, pouring food on her tummy hoping that'll help. And obviously it didn't. And like her, she was having pretty bad gi upsets. Were starting to and you know, after I realized that she was having stomach tummy aches. It's like, okay, so we got her in for the bloodwork it was elevated, but not elevated enough that we're they were confident just calling her celiacs without the scope. So she got a scope, there was evidence of the celiacs in the scope, like visually, like they could see the villi were worn down. And then also, you know, it came back positive. So she got the celiac diagnosis. And a came to realize that part of the issues that she was having, she was she would eat, she would spike high, and then she would crash back down. And I'm like, okay, is this a basil issue? Is her basil still way too much for her. But she's on like, a half, you know, Lantis at the time. So I'm like, Well, I can't really do anything about that. So basically, I was giving her just enough insulin to keep her under 200. And then I was catching the drop. Because like, what else do I do? Like do I let her go to 300 so that she'll level out at 100 later. You know, like, that doesn't make sense to me. So obviously not medical advice here. And I wouldn't advise people do that or take that approach. But it turns out, basically what was happening with the celiacs is her intestines weren't asserting her food. So as soon as her food would start leaving her stomach and going into her small intestine, like absorption would totally stop. And so she'd go from having, you know, all sorts of carb input and whatnot, and then her food just wouldn't absorb anymore. So she would completely crash. So after the celiac diagnosis, we took out gluten from our diet, obviously. And like her insulin needs started dropping like considerably. And so to the point where for a few, like few days stretches, she would actually like stop needing fast acting altogether. And she was still on Lantus at this point. So you know, like, we couldn't take that away easily. So there was still some feeding of insulin, but like there was like, for a week, you know, she would go she would have a few days where she would need insulin and then she would completely not need insulin at all for like three days. And then her insulin needs would come back, but they would come back higher because like pancreas would be like, Hey, dude, I give up. And then, you know, she'd kind of start tapering back down on her insulin needs again. And then it would go back up. But during all of this, like pancreas is kicking in and we're getting ready for her Omni pod start. And it's like they were already hesitant to give her an omni pod because your insulin needs were so low and you know, there are minimums for pods. And through practice by standard won't do diluted insulin and pump because that's not like a best practices type thing. Yeah, so I was starting to freak out and like we're starting a pump next week and she doesn't need insulin this week. Like she wouldn't be able to turn her pod and her endo was really comforting. She was like no, no like, this is probably like the inflammation in her body going away and it's like lowering her insulin needs and then her honeymoons coming back a little but her insulin needs will go back up as she starts to digest your food better. And her Ender was like 100% right about that because her insulin needs started to go up considerably. And so we started the pump and she was on like point o five alternating for her Basal, so barely anything. And like pretty rapidly like you could tell like her foods started digesting better again, and like she got so much more stable like we could give her insulin and she wouldn't crash later. So it was like this whole magical thing, but it was just kind of nuts to figure out

Scott Benner 54:56
how long did it take for the inflammation to die down? and free to find some stability.

Julia 55:02
Um, so the crashing part where the inflammation died down was a couple of weeks. And then it was only about like, maybe three weeks after that, that her insulin needs started to come back up and staying up where like you could see that like she was starting to heal.

Scott Benner 55:24
It's very interesting because it's incredible. Yeah. Hey earlier we did you misspeak or did you mean to say stump me? Because aren't included? I say you said stump me instead of Tommy. You start to say stomach then you said art Arden says that though? She says her and her girlfriends. They say My stomach hurts.

Julia 55:42
No, I totally meant to say tummy started to saying stomach.

Scott Benner 55:45
You can you can use it if you want the girls love it here. So.

Julia 55:50
No, yeah, I'm just talking too fast.

Scott Benner 55:53
No, that's okay. Stop me. If you made me feel at home.

I was like, I'm glad I could make you comfortable. Very nice.

Well, that's incredible. So yeah. Are you all like gluten free in the house? Now we're just her. So

Julia 56:08
we're mostly gluten free. Like we did glutened our kitchen like we cleaned everything top to bottom, like, you know, silverware drawers, or like big crumb catchers, apparently. So like, we did all that kind of stuff and got rid of everything, like cleaning the kitchen, like head to toe. And so it's like de glutened. But I do keep some gluten free stuff on hand for like my lunches and stuff that like, won't get crumbs everywhere. You know, like, I have some, like tomato soups that are microwavable. And some like microwave thingies and you know, stuff that we wouldn't give to her by mistake. But for the most part, our house is gluten free and our meals are bound her are gluten free,

Scott Benner 56:46
and the benefit for you or your husband.

Julia 56:50
Um, so for me, it's kind of backwards. Because I've I've had like a really weird journey with food. Like with having the gestational diabetes diagnosis, like feeling like I can't eat after that, because Oh, you're gonna get type two. So I was just kind of recovering from that type of approach. And then she gets a celiac thing. And I basically feel like I can't eat around her. So when I'm not around her, I have way too many snacks because I feel like later I can't like, what am I going to eat? You know what, I'm going to have an apple later gay?

Scott Benner 57:31
Would you sell it or what's happening to you an eating disorder or just

Julia 57:35
I think I'm just kind of struggling a little bit. I don't know, maybe it really messed with my head when I had gestational. And the the educator told me that I had an 80% chance of developing Type Two within 10 years. Like so then, like, and I was also breastfeeding at the time, like right after that. So here I was trying to eat super, super healthy. And I was breastfeeding soy and dairy free because Cora can't have dairy. So it was like this whole thing, like I couldn't get enough carbs in my body. So I would just like I was just like shedding the pounds like crazy. And I wasn't a huge person to begin with. And I had to lose weight to get pregnant. Because I had PCOS. So it's like I had already lost weight to get pregnant. And then you know, I had the baby and the baby weight came off easily. And then I was breastfeeding. And it was a whole big thing. So me trying to ward off type two was like borderline eating disorder. But I was eating and I was eating really healthy. But for the amounts that my body needed. It just wasn't enough.

Scott Benner 58:46
Julie, you know, there's a the doctors think that PCOS might be autoimmune. Oh,

Julia 58:54
really? Yeah. That's fascinating and upsetting.

Scott Benner 59:00
Sorry, I didn't want to be the one to tell you're like this is definitely my husband's grandmother's fault. Yeah, no. Yeah. Can you talk about that for a second? I know that's a left turn for you. But when did you realize you had PCOS? And how do you manage it?

Julia 59:17
So I my husband and I were trying to have a baby right after we got married. And my periods were starting to get really irregular. And I was really I had struggled with my weight for a while like I wasn't big, but I could not lose weight, like exercise and eating reasonably did nothing. Like I would lose like maybe a pound a month, which is just kind of a frustrating thing and makes it really hard to keep up with the diet. So that was kind of tough. And so you know, I'd go on these spurts where I'd lose weight and I've gained weight and then what I ended up doing to be able to get pregnant and like regularized my period it is I did the keto diet for about a year. And you know, I had a couple of miscarriages when We were trying, which is, you know, a risk with PCOS too. But yeah, the keto diet got me to a point where my periods were regular enough that I couldn't get pregnant and stay pregnant. And then I had Cora and it seemed like the pregnancy. First off, like negated the effects of going off of the keto diet somehow, miraculously, because if you go off of a keto diet and start eating carbs, again, like you just pack on the pounds, well, the pregnancy kept me from doing that somehow. And then it was just kind of a whole reset button. And like my PCOS seemed to like pretty much go away after I had four. And I think part of that is, you know, breastfeeding is a huge workout for the body, too.

Scott Benner 1:00:45
But so interesting, I can't get I have trouble getting straight answers about PCOS out of people, like in general, you don't I mean, even when you talk to doctors, like, Well, we'll see. You know, it's yeah, it's interesting, what they don't know. And, you know,

Julia 1:00:59
my doctors never gave me a huge straight answer out of it. They, I had switch during that whole trying to get pregnant thing. I started a new OB. And she said, yeah, if you have irregular periods, you probably do have PCOS. And that's like the most I ever got out of it. Like they never ultrasounded me to see, you know, like, Okay, how many sisters she have on her ovaries or anything like that? They said, Yeah, you probably do. And that was it. Like there was no real support for that. They did have me try Clomid a few times to try and get pregnant and kind of force and isolation.

Scott Benner 1:01:38
Sorry about that. I'm not sure what happened there. You said they asked you use Clomid too. And then oh,

Julia 1:01:48
yeah, so the Clomid is to like forcing ovulation because if you're not getting a period, you're not ovulating. That's why you can't get pregnant with PCOS. Half the time.

Scott Benner 1:01:58
Gotcha. Wow. Yeah. I just know that. It's frustrating to hear doctors go oh, you know, that's probably that. Okay. See you like, Wait, why write no more? You don't have other thoughts or ideas or no, just like, oh, that's tough luck. See you later kid. Yeah. And that's how it

Julia 1:02:17
was. And the other thing that really bugs me is when I had that miscarriage from the Clomid pregnancy, I had to ask my old OB about my progesterone levels, because I had read that, you know, sometimes you can't maintain a pregnancy because your progesterone doesn't you don't produce enough progesterone, which, you know, with PCOS and hormone imbalances, and she said, Oh, progesterone only helps you get pregnant, it doesn't matter after you get pregnant. Guess what my no OB did right after I got pregnant. She tests my progesterone to make sure that it's high enough to maintain a pregnancy.

Scott Benner 1:02:56
Nothing like getting completely conflicting information from places you just don't think should be confused about what they're saying.

Julia 1:03:04
No, no, not at all. It just I mean, I already kind of knew I was right to leave my old OB. But yeah, that definitely from that up for me,

Scott Benner 1:03:12
I hope that's comforting to people who think like, Oh, my endo doesn't know what they're talking about, you know, I mean, at this point. I mean, at this point, it's hard to get, I've spoken to people, and I've learned that it's hard to get good care for your thyroid condition. It's hard to get good care for your hormonal problems. It's hard to get good care for your diet. It's, I think it's just hard to get good care. Yeah, you know, I think people need to stop thinking that doctors are specifically not good at one certain thing. And maybe it's time to realize that we're only 100 or so years into modern medicine to begin with. And we don't really know a lot about a lot still. Yeah, you

Julia 1:03:53
know, you know, the interesting thing I found around here is, so within a 25 minute drive, I have like four different health systems I could go to. And you know, we're not like a metropolitan area by any means. So you know, we have a lot of health care options, like the one that's closest to me, it's really hit or miss on doctors. If I go to the one where I send Cora much better chances that you're going to get a good doctor. And then for chorus, like specialty stuff, we send her to the nearest big city because there's like a guaranteed chance at that children's hospital. She's gonna get a good doctor. Yeah, it's just it's kind of like this whole little like range of, okay, where do you go for what you need?

Scott Benner 1:04:39
Yeah, it's a game you almost have to play and how do you know how to play that game even? And how much wasted time is there when you see doctors who aren't helpful at all? And then just say things to you at the end? Like, hey, you might have PCOS. See you later. Like go great.

Julia 1:04:53
Right? You know, I feel like that's a huge benefit. You know, having a type one kid in my 30s because if I was like, 1920 having a kid, and then all of a sudden she has type one. I wouldn't know what the heck to do. Yeah. Yeah. You know, like, I feel like I at least have a little bit of life experience to like gauge those situations, you

Scott Benner 1:05:13
don't just pick the first thing someone says to you and go, well, that must be true. And now we're done. And you know, and then when it doesn't work, go, oh, diabetes, just confusing. Right? You know, just, I, it's one of the things that had bothered me constantly through this whole thing, and probably led in some way to the podcast is the idea of like, I don't I don't understand why when people get information that seems conflicting, they just nod their head and go along with it. Like, it just never made any sense to me. So

Julia 1:05:42
it's the whole questioning doctors thing. That's another big thing that took a long time for me to get my head around is the whole, you know, insulin isn't a you know, something like take as prescribed. Yeah, no, that's, you know, making your own adjustments thing. Like, you don't have to call your doctor and get permission.

Scott Benner 1:06:03
Yeah, count carbs. Give insulin, if that works good. If it doesn't, that's just diabetes. Well, we'll try again at the next meal. Like, right, that's, that's what we're gonna do. We're not gonna put any effort into this whatsoever to figure this out. Right? Yeah. Fascinating. Really. Julie, is there anything that we haven't talked about that you wanted to,

Julia 1:06:21
I guess the only thing is like the end of her honeymoon. So after she got the celiac diagnosis, it seemed like, you know, it was kind of starting to come to an end. But then she also when she started the pods, which you know, is going to be a little bit of an adjustment. But she also started to get chronic ear infections. So we had like, two months where she would have like back to back ear infections and the stuff the antibiotics wouldn't take him away. And she's also got the pile on of her party is now digesting her food, and all of that. And, you know, we're also trying to figure out a new system, which was pretty minimal adjustment in the scheme of things. But that's what really seemed to mostly kill her pancreas is like, all of a sudden, she needs so much more insulin for these infections and the food and everything else. That honestly, I mean, we're a year and a half in and someday she'd goes down to that point. Oh, five Basal great. And I don't know if it's still her pancreas, like producing a little bit or what, you know, but it's just like, we're not having a really clear cut time with the honeymoon on everything. But she got your tubes now. And that was like the best thing we could have done because now she doesn't have like an infection every other week.

Scott Benner 1:07:39
Her ears are draining better now. And not getting Yeah, and all that stuff. Okay. Did they give you any ideas? There's something about the formation of our ear canals, or did they talk about it at all?

Julia 1:07:49
I'm not really they said she probably has big adenoids, but they try to do that your toilet, your tubes first before they you know, do the more invasive taking out the adenoids. So they think that's probably why because she apparently has big tonsils, too. Okay, that can usually mean big adenoids,

Scott Benner 1:08:11
interesting. And that caused kind of a blockage and your ears don't train correctly, and you get infections.

Julia 1:08:16
Yeah, yeah. But actually, you know, since you had mentioned the auto immune thing with gestational diabetes, I also wanted to mention, like on a somewhat unrelated note, but an interesting tidbit. So when you have a baby with gestational diabetes, they track its blood sugar for a few hours after birth. And apparently normal range for an infant is 50 to 92. So I was looking on Cora's charts to you know, check a couple of her numbers, because I really wasn't sure where she had started out with some of those numbers. And I thought the blood tests I was seeing were from diagnosis, but apparently they were from birth. And like her first one, after she was born was 43. And they were checking every couple hours and what the lowest one she had was 24. And then once they finally got her up, over 51, like they just stopped checking. Okay. Yeah, isn't that bizarre though? 24 for a newborn.

Scott Benner 1:09:22
But did they give you any reasoning behind your ask?

Julia 1:09:25
So what they said is, you know, with the gestational that you know, sometimes kids have little hypoglycemia, but they also said, you know, more skin to skin, that kind of stuff. Well, I had a 36 hour labor, and then birther at 8pm Like, you know, I wasn't holding her too much doing skin to skin like I was gonna go to sleep. So that was part of it. But really what helped was they put her in the little baby tanning bed, you know, under the UV light. Yeah. And that's what really kind of ended up bringing her shiver up

Scott Benner 1:10:00
Interesting. Wow. Yeah. Just in time to. I don't know, it's it's she's an interesting and intricate story, especially in such a short amount of time.

Julia 1:10:12
Yeah, she's definitely kept me on my toes. And by the way, so with all of this madness going on her last day when see is 6.9 and her two week GMI is 6.4. So, like you guys, you've really helped a lot with the whole figuring this stuff out. And even though it seems like I should be afraid to give her insulin because of everything that is went on, you know, we were really able to maintain somewhat decent numbers throughout that.

Scott Benner 1:10:41
No, I mean, I think just your your focus on limiting the very high highs and understanding that at the moment, it doesn't seem like you can stop these drops from occurring, but you can stop them from being dangerous. I think that's what's keeping you in the sixes. It sounds like Yeah,

Julia 1:10:58
yeah. And I mean, now she needs a lot more insulin. So it's a it's a little bit of a different game than it was but yeah, I mean, she was around seven for most of them for honey.

Scott Benner 1:11:09
You're a good mom, Julia. Thank you. That's what I keep thinking while we're talking like this is a lot. And you're you seem like you're doing really well with it. So I'm gonna ask, Are you doing well? Are you okay?

Julia 1:11:22
I'm pretty okay. I'm a little bit of an anxious person anyway, like, not, not to a horrible extent. But you know, if you try for so long to have a baby, and you have struggles having a baby, the whole idea of keeping your baby alive after you have that baby is pretty, it's a pretty strong feeling. So, I mean, I've always kind of had that. So hyper vigilance when it comes to Cora came before the type one. Okay, um, so it's one of those like, I'll never, you know, turn that side off and just relax to a degree. But I think in general, I'm doing okay, like, I go in spurts where it gets to be a little bit too much. But, you know, I mean, I have a toddler with type one like, it's, it's gonna be too much sometimes. Yeah,

Scott Benner 1:12:11
no, I agree. Is her name Cora or is it Coraline? Cora, Cora? It's really pretty. Yeah, of course. All right. Well, I appreciate you sharing this with me it did it help talking about it. Like, did you feel good about the fact that you came on and did this, I always wonder why people want to come on. Like, for clarity. I'm gonna pull up my calendar. Okay. Today is Thursday. And if I count forward, let's just do two weeks 123456789 I'm making I'm recording 10 times the next 14 days. Wow. So I there are times where if I just get out of this month, I'm, I'm just, I'm just packed, like, I'll do at least 15 recordings a month. And then I keep my Fridays and Mondays open to do editing, and they end up getting filled with, like, you know, interviews that pop up at the last minute, like I did, I'm sure like, you know, Dexcom excuse me, HoloLens. Like I apologize, you know, or Jenny will be like, hey, I can work on Friday. And we'll come in and do stuff like that. So I record 15 to 20 times a month. And I'm always like, just grateful that people want to tell their stories, but I never understand completely why they do.

Julia 1:13:38
Well, for me, so whenever I would ask a honeymoon question, or I would see other people ask honeymoon questions online. People would just be like, oh, yeah, that honeymoon. That's a real, you know. And so I just was always kind of frustrated. Like, there's not a lot of helpful information. It's just like, oh, well, maybe you should just turn your kid high so that they don't fall. And I don't know, I just wanted to share her story, because it's such a unique one that, you know, maybe it could help someone because let's face it, she's got a lot of stuff going on. And you know,

Scott Benner 1:14:16
yeah, yeah, I Well, I'm glad I'm thrilled that you did. Like I really am. I just I always wonder like, Why do what makes people want to know, and I don't ask very much, but yeah, I just thought it was interesting for you to ask. Thank you very much. I can't thank you enough for doing this rolling.

Julia 1:14:35
I'm glad because it sounds like you think it's a good show. So I'm glad about that.

Scott Benner 1:14:40
They're all good. I'm incredibly good at this.

Julia 1:14:43
I know you are but you know there's always a little bit of insecurity like who is mining going to be just boring?

Scott Benner 1:14:50
Remember at the at the beginning before we were recording, you said I wasn't sure if I should come on like really prepared with what to say or not. But do you see that had you if you would have just stuck to a list. We don't even get to your PCOS.

Julia 1:15:03
Yeah, that's true. Yeah. And yeah, that is one like people don't talk about because I mean, there's a lot of ugly side effects to that too, like facial hair, for instance, like, I still have to go get lasered. Yeah. Even after having had laser done before,

Scott Benner 1:15:18
right. Yeah, no, I mean, yeah, people don't want to share that stuff. Because it's, I guess it's, they think of it as embarrassing, I'm assuming. But the point is, is that everyone else listening? They need to hear you say I have PCOS. They need to hear you say, you know, they need to hear me say Arden's trying not to eat gluten for a month to see what happens like because it's the only way you figure this stuff out. Because this, it doesn't come up in doctors offices, most of the things that we've tried for Arden throughout the years for, you know, any number of things, or thyroid or diabetes or any other problems are from us, like it's us going into a doctor's office and saying, What do you think about us trying this? And they go, Hey, that's worth it. But you don't mention it going in? You don't come out with that. They don't they don't say oh, you know, you should do you should try this. They just I don't know what's it's not doctors. And Julia, I'm not I'm not saying it's doctors. There's something about the way it works. It's not, it's not completely right. Do you know what I mean, by that, like, there's something about the way we see physicians and the time we spend together, or the lack of time that they spend together, there's something not right about it, you shouldn't know more about a thing that you can't understand than the person who has a chance of understanding it. And yet that happens over and over and over again. So I think these conversations are the best way to plant seeds in people's heads. And hopefully, they'll walk run into a doctor's office one day and go, You know what, I need a scope to see if I have celiac, or I need you to do a test to see if I have PCOS. Or, you know, whatever. Because people shouldn't say things to each other like, Huh, well, that's crazy. So you

Julia 1:17:05
know, honestly, that's so much of the approach with honeymoon to, you know, sure. It's like, oh, yeah, that's crazy. That's not suggestions.

Scott Benner 1:17:14
I think if you and Cory can stay alive long enough. This will end well. Thank you. Wonderful.

Julia 1:17:21
Yes, exactly. No more

Scott Benner 1:17:23
to it than that. You don't have any, any suggestions whatsoever, even just hearing you talk about the way the digestion changed after going off of gluten. I imagine it just that sentence will help somebody so I you know, I love these conversations being conversational and not being bullet pointed. Because you don't know even though it's your story. You'd if you knew all the parts about it that were important for me to hear, you would have figured out things already that you haven't figured out yet. So you get I think they just need to be spoken about out loud so that you can really hear it. I think it'll help you having said it out loud. I hope so. I think I think I think it will so Alright, well. Thank you very much. Sorry. Thanks, God have a good day.

Well, a huge thanks to a huge thanks to Julie of course for coming on and sharing that great story and having this chat with me. I also want to thank Dexcom, makers of the Dexcom G six continuous glucose monitor, and remind you to go to dexcom.com forward slash juice box to see if you're eligible for that free 10 day trial of the Dexcom G six. And if you're interested in the Omni pod five, or the Omni pod dash, you want Omni pod.com forward slash juice box links in the show notes links at juicebox podcast.com. When you click on my links or type them into a browser, you're supporting the production of the Juicebox Podcast and keeping the show free and plentiful.

Listen, everybody, I usually just say at the end something like what I usually say, well, thanks so much for listening. I'll be back soon I do that whole thing. But every once in a while I don't want to just like blurt out a sentence. I want to tell you about how amazing it is that you listen to the podcast and tell you why. I'm gonna give you a couple of numbers here. It's gonna freak you out a little bit. I'm gonna find these numbers for you. I should have found them before I started talking. I know, but I didn't. So anyway, this year, the podcast will have something like 5 million downloads. That's a pretty accurate number. It's astounding to me. I'm not gonna lie to you. I think the first year the podcast had 25,000 downloads 25,000 Like in the whole year. And now 5 million and next year if trends continue. I mean it could be twice that. And the reason I'm sharing this with you He's because it's up to you. Right. And it's because of you. Podcasts don't become popular because they're good or because they're valuable, as crazy as that sounds. I mean, I think that's why people share them, but it doesn't just magically happen. They grow and find other people solely based on word of mouth. And, and that's why I'm taking a moment here to thank you. So, a lot of downloads for a year, especially for a podcast that's in such a specific niche like this one is. So thank you very much for listening, for sharing and for supporting the sponsors. I genuinely enjoy making the show. I love that it helps people and I can't believe that it helps my family pay my bills. When I look back on my life, I just never thought I'd have a job like this. And the truth is, I wouldn't if it wasn't for you. So thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

Small child deluded insulin honeymooning mom has PCOS kid also has celiac.

#802 Diagnosed at 8 Months Old

Krystal's baby was diagnosed with type 1 diabetes at 8 months old.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 802 of the Juicebox Podcast.

Welcome to the show on today's episode we'll be speaking with Krystal, whose child was diagnosed at eight months old and has had type one diabetes for six years. And she's here today to share that story. While you're listening to it, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, the T one D exchange would love it if you could spend fewer than 10 minutes filling out their survey. It exists at T one D exchange.org. Forward slash juice box when you complete the survey, which by the way is completely HIPAA compliant and anonymous. You'll be helping people living with type one diabetes, and you'll be moving diabetes research forward without ever leaving the comfort of your home. T one D exchange.org forward slash juice box

this show is sponsored today by the glucagon that my daughter carries G voc hypo penne Find out more at G voc glucagon.com. Forward slash Juicebox Podcast is also sponsored today by touched by type one, head over to touched by type one.org. Or find them on Facebook or Instagram to see what they're up to. I'll give you a hint whether up to was helping people with type one diabetes, it's pretty great. They're not asking you for anything, they just want you to come and take a look touched by type one.org. Last but not least, this episode of The Juicebox Podcast is sponsored by us med you can get your diabetes supplies the same way my daughter does from us med all you have to do to get started is go to us med.com forward slash juicebox. Or if you prefer, call 888721151. For get your free benefits check today from us med us met.com forward slash juicebox. If you have trouble remembering the sponsors links there at juicebox podcast.com, or in the show notes of the podcast player you're listening in right now, when you click on the links, you're keeping the production of the podcast going and making sure that it remains free for the listeners.

Krystal 2:47
My name is Crystal and I'm the mother of a type one diabetic. And I reached out to you today because I heard your story of Arden. And though my story isn't exactly similar to yours, it just really hit me in the heart because I've been through it. And I know exactly how you feel. So I just kind of wanted to talk about my story today and maybe help other mothers or other parents who are going through it because at the beginning it's really really hard and really, really scary. And right now we're six years in and so far everything's okay. Sugars could be a little bit better, but I mean, we're still healthy. So yeah,

Scott Benner 3:28
tell me tell me I mean something about a something that I've shared struck you what was it?

Krystal 3:37
i You started because it's really like, personal information that you shared. And it might really trigger you actually.

Scott Benner 3:42
Did I say it on the podcast?

Krystal 3:44
Yes, you did. Don't

Scott Benner 3:45
worry. I'm not triggered person. I'll be okay. Okay. Yep.

Krystal 3:49
Okay, because it really like it triggered me and I was like, Oh my God.

Scott Benner 3:53
What do you not want to say? That's okay. Oh, no, no, no,

Krystal 3:56
no, it's okay. It's for you. It's just I don't want to bring back like your memories. You know,

Scott Benner 3:59
don't worry. I've been married for 25 years. Crystal, you can't hurt me.

Krystal 4:04
Okay. So it was a with the episode where you're talking about art. And when she had her seizure at two years old, or two, I think it was right. And she was talking about how she like couldn't see and stuff like that. And like, it just really like struck me like my son has said things like that before, and he was diagnosed So Young as well. And I just really like I was like, Oh my God, you know what I mean? And I heard your story and I listened to a lot of your podcasts. Not all I'm not gonna lie and listen to every single one you have a lot. But I have listened to a lot of them. And I just felt maybe like, you know, I heard you doing interviews with other people with diabetes with people living with people with diabetes and so on and so forth. And I figured, you know, maybe I could share my story, like I said, and just try and reach out to other people. But yeah, that episode were like, you were talking about art and the Having her seizure and you even put the video clip I was a mess. I was crying. I was so emotional and it really hit me deep.

Scott Benner 5:08
Did I put the audio in the episode? Or did I like post the video online for you to find?

Krystal 5:13
I can't. I can't remember exactly. I'm pretty sure you put the audio in your in the episode because I don't think I did any further searching other than just playing like the next episode on my podcast.

Scott Benner 5:24
Okay. Okay, then. Yeah, so for people who are listening now. We were, what were we doing? We're videotaping Arden for something. Yeah. And it wasn't about that. It was about something completely different. Or no, that's not even true. We did we have video cameras up. I know this is people are like, Why do you need a video camera? Because my phone has but back then there was no video? Yeah, first of all, there were no cell phones. But that's not the point. I had a video camera that was set up already. And it wasn't on and on. and I were talking about something. And she began to talk about what it was like to have a seizure. And I just pushed record on the camera and just let it run. And she didn't really know for a while that it was running. And it was interesting because she was so young. She described things. Gosh, this is going back in my memory. I saw exactly I saw colors, which I took I took them in like she was she wasn't seeing anything blocked. Like she was blind. She wasn't seeing she thought she sounded like a monster. And that's because she was grunting it like she had not lost the ability to speak during it. And she thought the colors were pretty Am I remember in this right? That she was saying?

Krystal 6:46
I don't remember exactly. Because it was a while ago that I had listened to the to the podcast. Yeah. But it was just it was genuinely about that. And I know you had also posted, I think a video or you were talking about posting a video or something of that, about where you were fighting a scary low, like, on the camera. Yeah. And he decided to post it. And that one really hit me deep too. And that was really the one that really made me like, reach out to you because those I've had.

Scott Benner 7:14
You've had you've had so tell me a little bit you have type one?

Krystal 7:17
Yes. No, my son is a type one. Okay. Yeah.

Scott Benner 7:20
How old was he, when he was diagnosed?

Krystal 7:23
He was eight months old. So he was the youngest child ever to be diagnosed in the hospital that he's followed up. And he was really like an anomaly. And we were seeing, I mean, he still has his whole diabetes team and everything. But at the beginning of his diagnosis, like everybody in the hospital was interested in him. And for the first good like, year, we weren't left alone because everyone wants to know when see this like special case, because it had only happened like once before that a child that young had the diagnosis in his in his hospital, you know? And so, yeah, we've we've been doing this for about six years. And well, he was really really hard in the beginning. Sorry, go what?

Scott Benner 8:05
I was gonna say being the youngest ever did they have trouble helping him? Did they not know quite what to do? Or did it seem like they had it under control?

Krystal 8:33
No, they kind of sent us away from the house we spent. So he was diagnosed, he was brought to the hospital because he was in really, really bad DKA. And he was in a coma for about two, two and a half days. And when we when we were told his diagnosis, they basically just told me it was a waiting game to see if he ever woke up again. Oh my god. Yeah. It was really scary. And I'll never forget the feeling of watching my son, my infant son just crying and screaming because he was terrified. And then he just passed out in my arms. And he, they were like, well, we're gonna see if he wakes up and I was like, Excuse me What? You know. So yeah, it was really, really, really traumatizing.

Scott Benner 9:18
Can you tell me do you remember what his blood sugar was?

Krystal 9:21
33 Mm. Oh, well, I don't know what that is in America.

Scott Benner 9:25
Version chart on my website. I'll go look real quick. Okay. juicebox podcast.com. Like glucose calculator. So many animals. It was 3305 94.

Krystal 9:39
Yeah, yeah. Thanks for an eight months old. You know what I mean? Of course. Yeah. And I know that his agency was around 11 or 12 when he first got diagnosed. And so he was he was really I

Scott Benner 9:57
you mind picking through it a little bit. So is he your No, no, go ahead. You're first second, third child.

Krystal 10:01
Yeah, he's my only child. Okay. And

Scott Benner 10:05
yeah, go so healthy up until you noticed what?

Krystal 10:11
Well, so when he was born, they told me that his sugars were high, but not high enough to be concerned. So I was like, Okay, well, that's weird. And we were, we were kept in the hospital for five days because he was really, really badly jaundice. He was, like, premature by like one day. So like, technically a full term is 38 weeks. And he was born at 37 weeks and six days. So he's technically premature, but one day, so I have no idea. But that is like anything for account like to, you know what I mean? And so when he was born, they told me that he sugars were really high. And they kept us there for five days because he was jaundice. And they monitors his levels constantly. And then by the time we were released from the hospital, they told us that it was okay, but just maybe to come back and check every now and then because after where I live, six weeks after we have a checkup, the nurse comes to our house and checks on the baby checks on us and stuff like that. And they checked his his blood gas levels and they were okay. She said, so, so left it at that,

Scott Benner 11:14
at the time of his birth. Did anyone mention diabetes or use? No,

Krystal 11:18
not at all? No, not at all even. Okay, so then when he was around two, three months old, he started having seizures. And I couldn't figure out why. They weren't normal seizures like you see in a TV, his arm would start shaking while he was nursing. And then his other arm arm would start shaking and then his whole body would be like convulsing, but just lightly, you know what I mean? So at first I figured maybe it was just like weird. Babies spasms, you know how babies don't have control of their muscles. And I was like, that's a little weird, but it's okay. So I didn't really do anything about it for a couple of weeks, until I was nursing him one day, and he had like a full on convulsion. And so I recorded it. Because his his seizures were so few and far in between. There was never any consistency. And so I recorded that like really bad convulsion because his whole body was trembling, and he was shaking while he was nursing. And so when I brought him to the hospital, they put on a hemorrhage, the ECG or EKG, the one that goes on the head to map to map the brainwaves. So they do watch his brainwaves. His brainwaves were normal. And then so they sent me home and never called me back. And that really makes me angry. Because we have a three month old having a seizure. And because it's brainwave is normal, they didn't offer to check anything else. And so I went home with this child who is seething and yeah, that was pretty much it. I was told that he was okay, there was nothing wrong. And so I kind of lived with him until he was about seven, eight months old. Having these seizures every now and then. And he was a really, like, he would cry a lot as a baby, which I kind of just chalked up to being colicky. You know, that's like a normal thing. But in hindsight, I realized that he was uncomfortable because he was literally starving to death because the sugars were too high. Because he would nurse all the time, all day, all day, all day, like all day, long all night. And when he started eating food, he would eat, eat, eat and chug water like I've never seen, right. And so I realized now in hindsight, that it was because he was a diabetic, you know what I mean? How old were

Scott Benner 13:22
you when you had him?

Krystal 13:24
I was 21.

Scott Benner 13:25
Okay, on your own or with somebody?

Krystal 13:31
Well, I was with someone, but I was essentially on my own. Okay. That's what I mean.

Scott Benner 13:36
Well, because the only reason I asked you you said something that made it sound like you were by yourself. And I don't remember what it was. And I, and what I what I was gonna say is that it's sometimes in those really confusing situations, it's very helpful to be able to bounce it off of somebody and be like, this seems weird, right? You know, looking back, how old is he now?

Krystal 13:55
Now? He's seven. No, sorry, six. He'll be seven soon.

Scott Benner 13:58
Okay. Looking back now, do you think he had diabetes his whole life? Do you think he was born yet? Yep.

Krystal 14:04
Entirely. I not. When I was pregnant with him, I got really, really, really huge. And I was insanely swollen, like record levels swollen. I didn't have gestational diabetes, but I was like, on the brink of that and preeclampsia. And I believe that those conditions in me kind of maybe triggered it and him. Yeah, if you understand what I mean, because he was born.

Scott Benner 14:30
I don't know. I mean, that goes beyond my understanding. But I but it just sounds to me like if his blood sugar was elevated when he was born, and then there's this constant, being uncomfortable. CO some seizures, constant nursing. I mean, it sounds like it sounds like diabetes, you know? Yeah. diagnosed.

Krystal 14:52
Yeah. And makes me feel like a terrible person. And I know that I shouldn't feel like a terrible person because I'm like, you know, I'm not going to judge myself for mistakes. I made you know, but the worst part is I was raised with diabetic parents. And I was raised to recognize the signs and symptoms, but I didn't think it was possible in the baby. I knew as possible in a child, but I didn't know it was possible in infants. So every single time he came up with a new symptom, I just dismissed it. Like when he used to wet through his diapers that night, I would put him to super heavy like, reusable diapers. So they were like, big, thick cloth. Yeah. And he would pee right through them in like two hours. And I was like, Well, maybe he just went to bed super heavy. You know what I mean? And everything that he came up with, I just blew it off. And now I look in hindsight, and I realized how many symptoms you have for so long. until they finally like was on death's door. You know what I mean?

Scott Benner 15:40
Yeah, Crystal, it's a little hard to hear you with the voice behind me one

Krystal 15:44
second. Sure. I'm gonna mute the sound for one second. I'm gonna move somewhere else.

Scott Benner 15:54
That's fine. Thank you

while crystal finds a quieter place, I have time to do this. G voc hypo pan has no visible needle, and is a premixed auto injector of glucagon for treatment of very low blood sugar. In adults and kids with diabetes ages two and above. Find out more go to Jeeva glucagon.com forward slash juicebox. G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G voc glucagon.com/risk. So the fact is, we all need medical supplies, but it's not a fact that getting them needs to be difficult. And instead of doing a classic us med add, today, I'm going to tell you a story. Arden's home from school and she's sick. Turns out she may have a sinus infection, and she's pretty wrecked. So we got out Arden's blood ketone meter to make sure that she doesn't develop ketones while she's fighting this illness. And she doesn't feel well. I mean, she's beat up, she's feverish and has a headache and her nose is full, she can't breathe. And I say to her, Listen, let's check your ketones to make sure. Well, after about the fourth or fifth time that the test trip wouldn't work, she was getting sick and tired of it. We had poked our finger like five times. And each time, nothing happened. And I was irritated. And I felt like an idiot. I was like what's going wrong here. But you know what was going wrong. Our old supplier sent us the wrong test strips. And they were in a box that was so similar to the correct test strips, none of us noticed. Now, when you think of why you might want to use us Med, you know, they've asked me to tell you about always having fast and free shipping, they always provide 90 days worth of supplies. They accept Medicare nationwide, and over 800 private insurers you know, I tell you about their A plus rating with the Better Business Bureau, etc, etc. They've got FreeStyle Libre three and Dexcom G six, and you can get Omni pod from there in tandem and blah, blah, I tell you that stuff all the time, right? Here's what I don't tell you is that when your kid is sick, and everybody is just on edge, it's nice to reach into a drawer and pull out the thing you expected to have. That's it. Us med.com forward slash juice box. We've been using them for quite some time now. It's a lovely experience. I hope you give them a try. You can also call 888-721-1514. Call today or go online, get your free benefits check and get started with us, man. I know it sounds like Oh, I gotta switch everything over and it's gonna suck and everything. But doesn't it suck now with whoever you're using it? Maybe it doesn't. And if it doesn't, you know what, fine, don't switch. But if you're fighting constantly with your diabetes supply distributor, do yourself a favor and check out us met. I'm gonna get you back to Crystal. Now she does find a quieter spot. But I first want to remind you that if you need any of the things that were mentioned today by the advertisers using my link supports the show. That's it. I don't make money every time you buy something or anything like that. It's as easy as if the advertisers see people coming through the podcast. They buy more ads, when they buy more ads. I can spend my whole life sitting here in front of this microphone, making a podcast for you. So if you have the need, please use my legs. Thank you very much

Krystal 20:01
Okay, I don't know if this is any better. Oh. I found a quiet hallway. But there's there's resents on a second.

Scott Benner 20:15
Is it still too loud for you? No, that's good. Okay, so I'm gonna stay here, then it's isolated. Not much is going on here. Cool. Tell people you're running from the law. Is that correct? Yeah,

Krystal 20:28
no. No, just trying to find a quiet area and a really big industrial office building.

Scott Benner 20:35
Well, that sounds good. Thank you. Well, I was gonna ask you, what do you mean, you grew up with parents with diabetes?

Krystal 20:45
So my mom was a type one diabetic, and my father was a type one diabetic. Wow. And yeah.

Scott Benner 20:52
each other and a type one diabetes mixture or something like that?

Krystal 20:55
No, no, no. My My father was diagnosed as a child and my mother gotten diagnosed in her 20s

Scott Benner 21:03
I think were they together when that happened? Yeah, that's crazy. Yeah, that really is crazy. Okay, so you. Alright, so let's take a little bit of a detour. What was it like growing up with two type ones as parents?

Krystal 21:19
I mean, that's a really loaded question. My mother was always sick, her diabetes really wasn't controlled, like, at all. So I was 10 when my mother died. So I don't really know exactly the truth of what happened, and so on and so forth. Like, I can't give you that much information. Because I was a kid, you know what I mean, but I know I grew up with her always, always sick, always in the hospital always vomiting. I know that she died in 2003. And before that, she was she had a pancreas transplant, and she had all kinds of organ transplants. And basically, just over time, her body was shutting down because it was poorly managed. Now, I don't know what happened to make it that way. Because like I said, I was a kid, you know, I didn't exactly ask questions, right. And as for my father, he was he took good care of himself. And he's still alive.

Scott Benner 22:16
Do you think like, with hindsight, I don't know if you have you had conversations with your father? Was it just mismanagement for your mom?

Krystal 22:24
No, I don't really speak to my father. Oh, okay. All right.

Scott Benner 22:27
Well, that's even something so Does your father know your your son has type one? Yep,

Krystal 22:33
he does. He was there when he got diagnosed. Okay, all right.

Scott Benner 22:37
Gotcha. Wow, Crystal, you're a little, you're a little puzzle. Okay, well see if we can put the pieces together. So you talked about feeling badly. And I would, you know, probably not be the first person to tell you that that's not really a reasonable thing to, you know, to feel 20 You're 21 Sounds like you're pretty much on your own. Just because you knew some of the signs of diabetes doesn't. I mean, who would think of it?

Krystal 23:10
Even? Well, it's because when I was a kid, every time I went to the washroom a lot or something like that, or if I was excessively certain my parents would check my shoulders as I can to make sure that I didn't get it. You know, my brother also has has diabetes, as well as my uncle. So it's all of my family. Hey,

Scott Benner 23:27
tell me again. Your mom was How old was she got

Krystal 23:29
it? She was in her 20s I believe I'm not sure. If I understood correctly. I think she got it as gestational diabetes, and it just never went away. Or something like that. And then it turned into type one. I honestly don't know. Like I said I was 10 when she died. So I didn't really get the whole story.

Scott Benner 23:45
It was just Do you have any autoimmune issues yourself? No, not that I know of. Okay. Hashimotos. No, thyroid, nothing. Okay. gluten allergy? No, no. Okay. All right. Interesting. Very interesting. Actually, Crystal, you really are something here. Hold on a second. So. And you're French Canadian? Yes. Yeah. Okay. Are you around Toronto?

Krystal 24:13
No, but um, the next big metropolitan city. Gotcha. And the French speaking one.

Scott Benner 24:17
Gotcha. I think I know, I you know, this podcast teaches me a lot about Canada. Sometimes not all accurate stuff, but I still learn things. Okay, so babies diagnosed. Okay, I guess we're at the point where they took him from you and said, Let's see if he wakes up. Obviously he did. But how long did that take?

Krystal 24:38
It took about two days, two and a half days. I can't really remember. All I know is that I was walking around his crib at the emergency room just bawling my eyes out. I didn't sleep for days. And we stayed we stayed in the ICU for about two or three days until he woke up and then we were transferred to a regular room where we stayed there for five days while they got his shirt because I'm the controls So sorry.

Scott Benner 25:00
And then how do you manage an eight month old? Is it with injections?

Krystal 25:06
Yeah, he's still on an injection. Now he's too scared to get the pump. So I mean, it's his disease. I'm gonna let him wait until he's ready. We finally got him on a Dexcom this year, thank Jesus, because that made my life so much easier.

Scott Benner 25:17
So So for six years, almost he was just doing shots and using the meter. Yeah. And how was that going?

Krystal 25:28
To be honest, I really liked the meter better than the Dexcom. Okay, because, I guess because I'm used to it. And usually when I see on the Dexcom, that he is going high, or that he's going low. I really, really overcompensate. So I'll give him too much insulin and he'll drop down too fast or give me too much food. He shoots up way too high, because I'm scared watching it beep and go down and go up. You know what I mean? So with the meter, I never had that fear. You know what I mean? I just waited till the next time I print them. And we'll see where it is. Numbers are. But at the same time, I do love the fact that I can watch him in the night with my Dexcom because I used to get up every night. You're breaking

Unknown Speaker 26:06
up. And Crystal. Yeah. Can

Scott Benner 26:10
you hear me? You're breaking up a little bit.

Krystal 26:14
Good now,

Scott Benner 26:15
I don't know you're talking and disappearing and then coming back.

Krystal 26:19
Hold on a second. Is it good enough?

Scott Benner 26:24
I can't say that was good, though. It sounded like a week. By the time this is over, you're gonna I'm gonna I'm gonna be on the roof.

Krystal 26:36
I'm gonna unplug. My thing is like I'm back in Hold on a second. Okay. Is it okay now?

Scott Benner 26:45
I think so. You were in the middle of you're in the middle of explain to me why you don't like the Dexcom as much as the meter. But it sounded like you're just overreacting to what you're seeing.

Krystal 26:54
Yes, exactly. But however, I really do like the fact that with the Dexcom in the night I can I can check him I can check his sugar's without having to get out of my bed and stuff like that, without pricking him. I like the fact that I don't have to hurt him every time I want to check him, you know. And before that, every single night, I will get up to three times and like to check your sugar just to make sure he wasn't dropping or anything like that. And so now with the Dexcom it's really saved me, it's just me, I have to get used to the patterns and the roller coaster rides. You know what I mean?

Scott Benner 27:25
Yeah, just trying to, you know, just don't overcompensate or under compensate. Well, so, can I ask you like a management question? Are there a lot of ups and ups and downs?

Krystal 27:35
Yeah, there are I still don't have good control. Okay.

Scott Benner 27:39
So, you know, I mean, I think if you're looking for my opinion, you would start by making sure that his Basal insulin is good, how much does he why he weighs

Krystal 27:49
about 50 pounds. And he takes seven units of basil, which apparently is like a lot. And his, his nutritionist hates me because of the way I run, not because of the way I run sugar, but the way I deal with services. She can't stand it but doesn't like every time I tried to her way his sugar like sky high to the point that his Dexcom doesn't even read it. So I just keep doing my way and do the best that I can. So

Scott Benner 28:12
yeah, I mean, listen, I'm not there. Obviously, I have no first hand knowledge of what's been happening. But I mean, if his Basal was more like, point three an hour, that would make more sense to me. So but yeah, but wait, wait, hold on a second. That's where you're at now, seven divided by 24 is point three.

Unknown Speaker 28:38
But if we did see Actually, wait a minute.

Scott Benner 28:45
It is 50 pounds.

Krystal 28:47
Yeah, around there. 50 or 53.

Scott Benner 28:53
Okay, let me ask you some questions over overnight this he said stable? Yeah.

Krystal 28:59
What doesn't? What number depends on when he goes to bed.

Scott Benner 29:03
So if he goes to bed at it, it stays at it. Yeah,

Krystal 29:07
if he goes to bed at like, say I'll put him to bed at seven whatever. It will stay at seven he'll drop down to maybe five and then they'll start going back up around after the dawn phenomenon. He goes back up. Okay, which is usually around three four in the morning for

Scott Benner 29:18
us. So a sevens like a 126 here in the States. What if you put him to bed at a six? Would he stay the six? Yeah, okay. Yeah, usually, but same thing if you put him to bed at a 10 He'd stay at a 10 Yeah. All right. So you think his Basil is probably pretty good. Yeah. And so then just Where are you falling short?

Krystal 29:42
Are you issues with that? It's was eating because he's so difficult to get to eat. And he really loves to do this thing where he asks for the food, and I'm making the food. And then as soon as I give him the insulin, he doesn't want it.

Scott Benner 29:58
Kids. Alright, See ya. See, there's a spot where if you had a pump, you could like Bolus Bolus a little bit. And then once you knew he was eating, give him the rest.

Krystal 30:11
Yeah, that's why I want to. That's why I want the pump. And like I said, it's his body. He's afraid he doesn't want and I'm not going to force it on him. You know,

Scott Benner 30:18
is there any amount of intake that you can always count on? Like, even if the meals 50 carbs? Can you count on at least 10 of

Unknown Speaker 30:27
them going in? No, not not consistently. Okay. So

Scott Benner 30:31
you're not Pre-Bolus eating meals. So you're spiking? Hi, do you

Krystal 30:35
and then dropping down after I used to Pre-Bolus meals last year, he was really good at eating. And so last year, I had really fantastic control, right is a onesie from the year before was at No, not even year before the the month before. was, I think nine or 10. And then I had gotten it down to seven. And which is

Scott Benner 30:57
that's, that's a nice reduction to from nine to 10 to seven. Really wonderful.

Krystal 31:02
Yeah. And so last year was fantastic. And then this year, he started this whole eating phase and then now he only wants like to eat sugar and stuff like that, because he knows that if I give him the answer, that's what he's getting guaranteed.

Scott Benner 31:15
So right now he's spiking up, crashing down, you're overcome your overtreating the low, and send them back. So you're just jumping up and down all day long. Yeah, pretty much. So the first meal is the end of the day. It just ruins everything until you get all the food out of him. Get him stay at home, put him to bed.

Krystal 31:34
Yeah, gotcha. And also the physical activity. Some days he's running around and climbing my walls. Other days. He's just sitting there watching TV. So yeah, it's hard. It's hard to have a six year old.

Scott Benner 31:45
No, I don't disagree. It is. It's not easy. And I guess it gives me like I said, with a pump, you could at least put a little bit in and stop the big spike. But, you know, in order to do that with MDI, you have to shoot him twice. Does he mind the shots?

Krystal 32:05
Yes, I know. He says. He says no, but I heard him sometimes, like when I give him the injections, I can see that there hurts him. But I know that he says no, just because he's afraid.

Scott Benner 32:17
You think he doesn't want to make you feel bad? Yeah. Well, I mean, you know the answer. So the rest of it's him wanting to eat more, you know, consistently, I guess. I'm sorry that that's a struggle. I do think he'll get a little older and it'll stop. I was gonna say, I wonder if he didn't. I mean, he's so young, though. Like, I don't know how easy it is to like, explain big ideas to a six year old. I don't remember anymore. But, you know, like, what if you said to him, Look, it's fine if you don't need everything, but you know, we're just going to, we're going to inject twice then to be sure I don't get you too high or too low. I wonder if eventually he wouldn't just i Sounds kind of I don't know how that sounds, actually. But I wonder if to avoid the second shot. If he wouldn't just eat his lunch eggs, for example. Now, he wouldn't. He wouldn't care. So he's the not hungry, or is he distracted?

Krystal 33:15
Sure. Justice as good as mine.

Scott Benner 33:19
I gotcha. Well, good luck. Thank you. No trouble? Is there a lot of I'm trying to figure out what made you so emotional hearing about Ardennes? Well,

Krystal 33:33
it was like I said, it was really just hearing about the lowest and the like, the scary low because I've had those so many times. I've luckily avoided seizures after his diagnosis. But like, it just brought back my own memories of the times that I've had to shove everything I could find in his mouth while he's, like half conscious. And it just it really like it really just made me want to reach out and just kind of say, you know, I feel you and to let others hear my story about how many times I've shoved things in his mouth while he was dropping down to the floor. And, you know, let's just basically I want to let other parents know that it's normal to be scared, and that it's gonna take time to get used to it because I see on all these Facebook groups and stuff like that the support groups, all these parents saying like, Oh, is it ever gonna get better and it doesn't, but you learn to adjust, you know what I mean? And I was actually recommended your podcast in one of those Facebook groups. And I'd say for me, personally, it took about two years to feel comfortable, like okay, and four years to feel confident. Now I changed his his ratios and his doses and stuff like that myself. I don't call his team anymore, because I know what I'm doing. You know what I mean? But it just, it was just really like, emotional for me to live. Cindy, you, when you were talking about with the video, and you caught the low while you were feeding, you were like feeding her and you decided to post on your website or whatever. And like I've been there, done that. And

Scott Benner 35:11
it's so much more difficult when they're that small to right. I mean, at eight months old at eight months old, what did he weigh?

Krystal 35:19
Got 17 to 20 pounds, maybe

Scott Benner 35:23
right? And then probably didn't gain that much weight over the next year or so

Krystal 35:28
even? No. I mean, now it's 60 is only 50 pounds.

Scott Benner 35:31
Right? Very small to begin with. Do you ever have his thyroid

Krystal 35:33
checked? Yep. Every year at his annual checkup?

Scott Benner 35:37
Would you tell me what his TSH is? Do you know?

Krystal 35:40
I don't know. Sorry. Everything's normal, though. She told me Yeah, he told me the number but last time, but I can't remember.

Scott Benner 35:45
Do me a favor. The next time you dig out that number? If it's over two, but they're calling it normal? Why don't you press them to medicate him? I know they want to call that normal. But over to like over 2.1 There's a thyroid episode you could listen to that would tell you, but over about 2.1 2.2 If he could be having symptoms, and you would know and and I'll tell you that Arden was the tiniest person in her school. And then we figured out she had thyroid issue she got on the thyroid replacement. And that she's like, Ardens, five, seven now. But at 1011 12 years old, Arden was like five, three, she had like 75 pounds. Okay, and so I just know that a lot of doctors will say no, that's in range. Like they'll call a four TSH is in range. Because I guess technically it is in it's in the it's in the it's in range. There are some hospitals that won't medicate it to like an eight. Which is which is insane. But, you know, who knows? Like, I wonder if I don't know, I could be completely wrong. But I would check if I were to show.

Unknown Speaker 37:06
Okay, that's all all last time I go. Yeah. And

Scott Benner 37:10
if it comes back higher than two or so and you like write me out. I'll I'll point you to the right stuff and, and let you make a decision for yourself. But you know, I mean, is the lethargic. Does he lose his hair? Does he have trouble? Is he constipated? No, none of that. No. Okay, good. Well, that's good. May I? Maybe I'm 100%. Wrong. That'd be great. If I was. Yeah, right. You need some of that go? Good. Do you worry about getting diabetes?

Krystal 37:40
Yeah, I do. I mean, it's all in my family. And I'm not gonna lie. I don't have the best eating habits. So I know. I'm not helping myself. So I am worried. But at least if ever I do get it, I'll have him by my side with me. You know?

Scott Benner 37:53
Well, yeah, you can definitely do it together, that's for sure. But with both of your parents having it, and your mom having the end that she had, and your son and your son getting I just wondered like if you, you know, if it was something you worried about? Would you call it a constant concern or just something you're aware of?

Krystal 38:10
No, just something I'm aware of. Okay. I don't really live my life worrying like that. If it comes to comes and I'll live with it when I have to.

Scott Benner 38:17
Gotcha. Well, you'll definitely know when it happens. If it happens. Excuse me. You've got enough. You've got enough practice. Thanks for your wishful thinking, Oh, well, I'm sorry. I just misspoke. I don't necessarily think you're getting diabetes. Is it difficult? How are you finding school? He just must have started school recently. Right? Well, you are gone. Your voice disappeared. Crystal, you're not there right now.

Krystal 38:47
Can you hear me? Okay. It's it was difficult, but they take really good care of his diabetes. The only thing that's kind of enraging for me is that we don't really have any like train staff. There's no nurse, there's no nothing like that. I know in the States, you guys have like your 504 plans or whatever it is. But we don't really have that here, at least not that I know of. We have our Canadian equivalent, but it doesn't really do. Much like in the states that is really a lot more severe. And, I mean, the staff that are there, they do the best that they can, but I just really wish we could have someone like on him 24/7 So that way, it's not.

Scott Benner 39:26
How does it work then? Because he's six, I mean, he he's given himself shots.

Krystal 39:30
Yes, at the moment, he gives it to himself.

Scott Benner 39:33
Do you guys go back and forth, like through text or something?

Krystal 39:36
No, we call his school at lunchtime. And he goes actually his father's calling right now because I'm on issue as far as calling right now, and he's going to tell the nurse to put him on the phone, not nurse. Sorry, the Secretary put him on the phone. Right. And then he gives it himself. And that's it. That's it.

Scott Benner 39:55
If this is too personal, don't answer me but are you and his father together? No, no. Okay. Do you split time with him? Does he go to? Is the management? Does the management change? from one home to the other? Yeah. How? So? If you're able to say,

Krystal 40:16
yes, the sugars, His Father's house are much more out of control than my house, because I don't really allow snacking in my house. And he does. And also, I don't really give a lot of junk food. And he kind of just looks like, whatever and deal with the consequences later. So

Scott Benner 40:38
there's nothing There's, is that a conversation? Have you ever had a conversation with them? And

Unknown Speaker 40:43
oh, yeah, okay. Yeah.

Scott Benner 40:46
doesn't help much. No, no. It's a very common issue. I know that for sure.

Krystal 40:56
However, my wife takes better control of his sugars, and I do. It's like she was born to be his mother. I don't understand. She's phenomenal with the sugars.

Scott Benner 41:05
Okay. Oh, so there is somebody who is she mostly who's mostly involved when when he's with you? Okay,

Krystal 41:15
yeah, his father just calls the school because he has the time.

Scott Benner 41:21
That sounds that statement sounds like there's a half an hour worth of complaining you could do afterwards. He has the time. That's not why we're here. So we'll skip over that. But you made me laugh some other story. Yeah. You made me laugh when you said that. I was like, Oh, I think I know what she means by that. Sorry, hold on. You took me by surprise. Give me a ticket. You took me by surprise. That was great. Okay, that's funny. So do you think he'll go for a pump? Or like, what's his, what's his what's holding him back at this point?

Krystal 42:09
I don't know. I hope he will, eventually, one day because he has the Dexcom. And I know that he's happier that we don't prick him as often, I still do check them sometimes just to make sure that it's accurate. And sometimes if his Dexcom is having a sensor fail, I'll use a thing until it comes back online or until I change it, whatever. So I know he's happier that he has to be pricked less. And I'm trying to get him to understand that, you know, my son is like, really, really sensitive to carbs. And if I give him like 10 carbs, he's gonna jump up, which isn't much, you know what I mean? Yeah. So for every time I feed him, I have to give him insulin and then give them insulin again, to correct after and, you know, I mean, it's definitely that so

Scott Benner 42:52
have you told him that, like, have you gone through it and said, Hey, if we had a pump, we wouldn't do the shots and you tell him it would be easier to snack?

Krystal 43:02
You know what, I might bring that up? I might help actually, there's always hungry. This kid is like a 16 year old and a six year old body? I don't understand.

Scott Benner 43:10
Well, yeah, maybe maybe that would help him like, just kind of, I don't know, just get a clear, like big picture understanding of the whole thing. I mean, you just have to find a way to say it to him, that he understands. Yeah, that matters to him. You know, forget understanding. He's probably understanding what you're saying he doesn't care. You know, you get a fine, get a fight. Like, I'd be like, hey, you know, when this happens, and we don't, we don't do this. It's because we have to inject and but I don't know what you could do to get them moving in that direction? Because the truth is, I mean, listen, if you put a pump on him, and he hated it, I don't imagine you'd make him stay on it. But no, of course not. Yeah. I think that my expectation would be that once he gets on it, you know, a week or two later, he's not going to remember not wanting it.

Krystal 43:58
Yeah, that's true. That's kind of what we did with Dexcom kind of just forced him on and I said, Listen, just try it for a week. Yeah, he don't like it. We can take it off on he's he likes it. Now. It doesn't even hurt him to put her on his crazy, big needle in this tiny little body. And I'm like, wow, you just take it like a champ.

Scott Benner 44:12
Yeah, no, I hear what you're saying. I have to tell you, like, you know, what I usually say on the podcast is I you know, I'm not into letting kids make medical decisions. I mean, I don't want to do something they absolutely don't want to do but a lot of times, you know, kids just you know, listen, I'm saying kids people in general, forget. You know, everybody's resistant to change. I mean, if you want to make people like you know, make an adult upset change the way Facebook looks people like lose their minds. Oh my god, right. They

Unknown Speaker 44:43
moved them Yeah. Why

Scott Benner 44:45
did they change the color? Where's this that like, it's good think that you think it was the end of the world? And, and I think that everyone's like that. I think change is hard for people. But the truth is, I don't know. You know, I've been through a lot of bad things in my life. And in this moment, I don't remember any of them. So, yeah, right. So, you know, here's the pump, we're wearing it. What what makes this right for your kid? I start dealing dollar bills into his hand or not dollar for putting out loonies up there or something like that. I just start ripping those loonies into his hands. He looked happy. He was like, Are you go where? You're fine. We'll go out and spend this money afterwards. Get yourself something nice kid. It's a good idea. Yeah. I'm, I'm I'm okay with bribing children, certain situations. I mean, not for everything. But any, because if he could put him in a position where he didn't understand it, you know, maybe a week or two later and say, Hey, isn't this great? We haven't stuck you with a needle and you know, forever. Yeah, he might be, he might be thrilled by it. And then all of a sudden, you can Pre-Bolus your meals better, then all of a sudden, you can you know, it just changes everything. Yeah.

Krystal 45:57
So I've heard, yeah, I'm also going to, I'm also not going to lie. I'm a little afraid of the pump, too, just because I'm afraid of pump failures. But I know what the Dexcom I don't have to like, worry about that. Because I'll see if there's a pump failure. I'll see his sugar's rising. Yeah. But that was always a fear of mine, too. So I understand his fear. But I also think that it would be better if he did you know, I mean, at least try.

Scott Benner 46:19
It's so interesting, because that is everyone's

Unknown Speaker 46:24
fear. Yeah, because it's terrifying.

Scott Benner 46:27
Except Did you ever see it? Like, like, when's the last time you like, pop them to like a Facebook group? And you heard about the scores and scores of people whose pumps failed all the time? You don't? I mean, like, it doesn't really happen with any great frequent. I mean, I listen, I oversee a Facebook group with like, 25,000 people in it. Well, I don't know the last time I saw somebody say, hey, my pump stopped working. And I didn't get insulin, and I went into DKA. I haven't, like I get the concern. But to your point, you're always aware of was blood sugar is with the Dexcom you're not gonna get too far away from not having insulin before you know it. Sure. Yeah. That's all I mean, I get the concern. But I don't think it's gonna really rear its head in your life,

Krystal 47:11
though. Yeah, it's like a one in a million chance.

Scott Benner 47:13
I don't know that. I don't know the odds, Crystal, but I think it's uncommon. I mean, yeah, at least in my experience. I mean, art has been using an omni pod. So that's the one I want. Okay. Well, there you go. She's been using it on the pod since she's four. She's almost 18. So that's 14 years. And we once had a bent cannula where she wasn't getting enough insulin. And her blood sugar was rising. We saw that it was rising. I'd happen overnight. We did sleep through it for a little bit. We got we got her up. We over hydrated her got her ketones back down again, and you know, put a new pump on her. And but my point is, is that I mean, what is my point Hold on, I'm gonna pull up. I'm gonna pull up a calculator here to make my point. Arden has been using it basically for 14 years, right? There was 365 days in a year. You put a pod on about every three days. So divided by three were 121 pods a year, times 14 years Ardennes were about 1700 pods, and one of them had a bent cannula.

Krystal 48:24
You know, I'm saying when you put it that way, it's a lot less scary.

Scott Benner 48:26
You mean you mean when you think about it realistically? I think I mean, to me, that's that. I don't know. I get the pump. I don't look

Unknown Speaker 48:34
back, but we'll see. I'll bring it up to him tonight. Yeah.

Scott Benner 48:39
Listen, tell him the guy on the podcast. He don't know. It's,

Krystal 48:43
I guess I'll have to show him the podcast as proof.

Scott Benner 48:45
2022 people on Tik Tok look famous to him. You know what I'm saying? I was I saw something the other day this girl? I don't know. Crystal. Listen, it seems to me that girls on Tiktok are making money bouncing up and down. That seems to be what's happening. And I saw a video somewhere I don't. And my daughter's like, what is that? I'm like, I don't know. I'm like, What is this girl doing? And she goes, Oh, I think she's trying to make money. And I was like, gotcha. And then she goes is that and then she says the girl's name. And I'm like, you know that person? And she's like, I don't know or know her. But I know her name. I'm like, you know, you know someone's name because they wear a loose shirt and bounce up and down on Tik Tok. And she's like, Yeah, like the world's very strange. You know how hard George Clooney had to work to be George Clooney. You know what I mean? Yeah, turns out now,

Krystal 49:39
nowadays, the internet blows up with the most random things possible. Super easy. I'm

Scott Benner 49:43
just saying you let my voice come out of a speaker. That kid will think oh, I have to listen to him. It's ridiculous. But what the heck.

Krystal 49:54
If it works, it works.

Scott Benner 49:55
Listen, there I go with what works. Crystal tell me Is there is there any Anything that we haven't talked about that you want to?

Unknown Speaker 50:03
I'm

Krystal 50:06
not I can think of I spoke about his diagnosis. I spoke about his scary lows.

Scott Benner 50:16
I do want to dig a little more into that if you feel comfortable that we've gone. Okay, so from eight months, Josh Jesus and this crazy eight months old to six or seven years, almost seven year saying, Yeah, okay, so basically six ish years a little more the kids had diabetes. But you've been through so many different versions of type one, like with an infant, with a toddler, with a young child like it's just, it probably feels like you've started over a half a dozen times.

Krystal 50:48
Yeah, it's, it's really hard, every growth spurt that he goes to, it's like, I'm back at the beginning. And I have no idea what to do. Because the insulin, the hormones, change the insulin so much, and sometimes it gets used up like crazy. And I can give him no one's live and he'll be dropping most fast. Other days I can give him like so much insulin and it goes nowhere.

Scott Benner 51:11
It's it really is like, I'm just thinking about it. You really have. You've raised like, three or four different people with diabetes already. Like seriously, you don't I mean, like, and it's going to keep changing.

Krystal 51:24
Like it was so scary for when he's a teenager.

Scott Benner 51:27
Yeah, when you're 40 you're gonna have the wisdom of like, 100 year old person.

Krystal 51:33
That's just on my life experiences alone, not including him.

Scott Benner 51:36
Well, we haven't gotten into that yet. But but I just like, I mean, how many lows Do you think you saw in the first couple years that were frightening to you?

Krystal 51:46
Frightening ones, the ones I really burned into my memory. Do you mean?

Unknown Speaker 51:49
Yeah. Good question. Hold on.

Krystal 51:55
I'd say at least a good handful, maybe 123? I'd say about four or five. Other really scary scary ones. How much ones where I'm narrowly avoided hospitals? How much

Scott Benner 52:11
of them? How many of those do you think were made more frightening by your age?

Krystal 52:20
By my age, or his age,

Scott Benner 52:21
yours, I mean, his is obvious. But like, I don't know that you you sound like you might have had a tough life. Like I'm I'm guessing. So like, maybe you're a little more grown up than then some people are when they're 21, and 22 years old, but my son is 22 If I put him in charge of a hamster, I'm not sure it would be alive. So um, you know, you're you're 2122 years old with an eight month old, a one year old who has diabetes, working just with a meter and shots? Like, are you like some kind of, like, super mature person? Are you freaking out?

Krystal 52:54
Oh, I mean, I was freaking out. But I was ready to have a child and whether they were healthy or disabled or whatever. So I was ready for whatever came my way. And I just kind of took it in stride did what I had to do, did it all again the next day, and manage it as best as I could. Thank you. Were we gonna say? I

Scott Benner 53:18
said, that's wonderful. Why do you doubt yourself? You're so confident otherwise?

Krystal 53:23
I don't really doubt myself. To be honest. It's No, I don't really doubt myself that his diabetes, it's just it's just hard to like, you know, I try as much as I can to get his sugar's under control. And like, I just don't see results. And it's frustrating. It's frustrating, especially when I'm looking at Dexcom. And it's a frickin roller coaster ride. It's like, Man, I'm giving it my all and it's just like, doing what it wants. You know,

Scott Benner 53:48
I understand I use the wrong word. I said, doubt. I meant before, like, you felt like you were punishing yourself a little bit like,

Krystal 53:56
Well, I mean, you know, mom guilt. Yeah,

Scott Benner 53:58
I guess so. Right? That thing is very, very real. Yeah. You can't get away from it. I don't know what happens. The minute the baby comes out, you just lose your mind.

Krystal 54:09
Nothing I can do is ever good enough.

Scott Benner 54:12
It never goes away, apparently. So good luck. Oh, great. My children are like, you know, pretty grown. At this point. I still look at my wife. I'm like, What are you beating yourself up about right now? Like?

Krystal 54:24
I hope one day I'll be able to let it go. Because I know. Like I know, logically speaking that. It's normal that a 21 year old would miss a diagnosis of a child. Like the day that I brought him to the hospital. I didn't even notice anything was wrong with him. I just thought he Okay. Hold on. Let me explain my story a little better. So the day that he was brought to the hospital, I was out at breakfast with my friends. And he was really like, lethargic and I this will forever be burned into my brain and it's a huge trauma for me. We were at the table and the waitress brought us water to drink. And he took my huge, amazing glass and he chugged it all. And he was eight months old. You know, they're not supposed to drink that much water. And I was like, Oh, my God, that's really weird. But it was like 40 something degrees Celsius. And I figured, you know, we're just in the middle of a heatwave. He just really hot. And he was lethargic. And he wasn't really like getting up at the table like he normally was. And I just kind of attributed to like a heatwave. He's just tired. Maybe he's cranky. They didn't sleep well, the night before. He was nursing all night long that night. And my friend picked him up because he was crying. After he drank all the water. And she was like, something's wrong with him. I'm like, really, really sure. Like, you know, and so she just kind of consult him. And later on, I went about my day as normal. And then I realized later on in the day, after my friend had told me that something was wrong. And after witnessing an eight month old drinking an entire mason jar of water. Later on, I had brought him home, and I realized that he was breathing as if he was running a marathon. Yeah. And his whole chest was sucking in. And I was like, Oh, my God, something really is wrong here. But it took me like the whole day, to really realize that something was wrong with my friggin baby, like my own baby, you know what I mean? And that's the one thing that I really can't forgive myself about. Especially sometimes I will design the diabetes,

Scott Benner 56:32
Crystal art and look like a zombie for a number of days before we figured it out. Like she just turned around with a she was only two. And she wandered around. Like she weighed 17 pounds. She was two years old, and she had a dead like a death stare just a like 1000 yards there. You couldn't interact with her really? She couldn't stand up for too long. And it still took days to figure out like, what was that girl? I know how you feel? I'm sorry?

Krystal 56:59
No, no, it's okay. It's, I mean, it is what it is. Right? It's already happened. There's no point in stressing over. But when I think about it, it really like tears me apart. Thinking about the fact that someone else noticed before his own mother did. And then I went about my day, just like kind of keeping an eye on him. And like not really realizing there was something actually seriously wrong until I went to the hospital. And then we were in the hospital for all of maybe 20 minutes. And then the way it works at my hospital is that you have to go in and they triage you. And then you go to the waiting room when they're going to call you to see the doctor. And they have one specific room that you're supposed to go back into if your condition worsens or changes, whatever. So we had been triaged, and then we were sent to the waiting room. And I went back in because he just kind of like, collapsed in my arms. And he was I want to say conscious, because he wasn't really conscious, but his eyes are open. And I was like, something's really wrong, my baby like you guys got to help me. And then so they did a quick urine test. I think we're blood tests. And they told me that he has type one diabetes, and after that they were trying to get him like, set up with insulin drips, and sugar drips and whatever. And she was just like, screaming and crying in my arms. And then he passed out. And then they told me that they would let me know they ever woke up. And I was like, wow, that's cool. Yeah, I feel so guilty.

Scott Benner 58:25
I know. But I'm gonna say something completely obvious to you. That it's not obviously, it's easier said than done. But you're gonna have to get past that, you know, you don't want to keep beating yourself up about that. Because look where you are now, you did a good, you're doing a good job bringing as a one seat down, you're aware of why you're having the issues that you're having. So it's not like you're just lost, you know what's going on. And you know how to fix it. And you and you have a pathway to maybe figuring it out with a pump, it sounds like, and he's, and he's gonna get older and it's going to be easier for him to get, it's gonna be easier for you to say, look, you know, I listen, I don't care. Just eat this, you know. And he'll listen. And I mean, you've been through something that's so terrible and so difficult. The rest of it might end up seeming easy. You might be one of those people just laughs like, oh, yeah, this isn't hardly anything compared to when he was two years old or three years.

Krystal 59:18
Yeah, that's pretty much where I'm at. Yeah.

Scott Benner 59:20
Wow. All right, Crystal. I'm going to ask you one more question before I let you go. Where I cannot figure out your accent completely. See, you're obviously French Canadian. But at the end of your words, you sound Spanish for a second.

Unknown Speaker 59:33
Spanish? No, but no, but you're not right.

Krystal 59:37
I'm just French Canadian. Yeah, I'm just, I'm an Anglophone and a French say it again. I'm an Anglophone and a French province. I'm English speaking. But I guess I just pick up some of their mannerisms. Because I've been here my entire life. Yeah,

Scott Benner 59:49
there's just a little at the end of your word. Sometimes. I'm like, I know she's not but it sounds like a little. So I was trying to figure out what the rest of it was. You're born where you live. Yep, yeah. Born and raised. Are you Cool. That's excellent. I love people's accents. I think they're, they're super. Yeah, I think I find them incredibly interesting. My must seem very boyish to you, but

Krystal 1:00:09
you just sound American.

Scott Benner 1:00:11
Oh, Oh, perfect. I'll take it. Alright, hold on one second for me. Yeah. Okay, thank you

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