#1889 Let Them Eat Cake
A mom's thyroid cancer, then her breastfed 10-month-old diagnosed with type 1 in DKA, a diabetes educator who said feed the baby cake, celiac, and years of fighting for care.
Let Them Eat Cake
Cold Open & Sponsors 0:00
Welcome back, friends, to another episode of the juice box podcast.
I had papillary thyroid cancer.
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You're looking to help or you wanna see people helping people with type one, you want touched by type1.org. I'm gonna hit record now. Okay? I don't usually do this. Say testing.
Testing.
Okay. Good. So, I'm gonna do the intake part on the recording. You're the first time I've ever done this, I think.
Okay.
So so Aileen's here. She was nice enough to jump on when my recording for the day had to cancel at the last minute. I went to the Facebook group, and there is a my gosh. There's 88 comments in that in that post already. And looking for somebody who could literally jump on right now and and record a podcast.
So thank you very much for doing that.
You're welcome.
You're very nervous, you said?
Yes.
Please don't be. Please don't be. Here's what I usually do before we start recording. I say, do you have any questions or concerns or anything that you'd like to ask me before we record?
No. I just will preface this that, like, my memory for almost nine years ago now is not a lot of the questions you ask sometimes about diagnosis. Like That's okay. Peptide or that kind of stuff. I don't really know the details.
I don't either. It's not it's not court. You'll be fine. About names, you can use your full name. I'm gonna ask you to introduce yourself in a minute.
Right? You can use your full name if you want to. I don't think you need to. If you're compelled to, I'm not gonna stop you. People in your life, it would be better to say my neighbor or my doctor than to use people's names, a, because they might not want their name used, and, b, because it's actually confusing for people.
Just, you know, my neighbor makes a lot of sense to people. I can't be your guardrail. So if you start saying crazy shit, you know what I mean, like, that wasn't me. I'm just gonna ask I'm just gonna answer, you know, and ask questions. Everyone says, oh, there's nothing crazy about my life, and then inevitably somebody says something absolutely insane.
So so if if we're talking about, like, you know, your great grandfather's war crimes one day, like, you you know, it wasn't me. You you you got me there. Okay?
Okay.
Sounds good. Yes. I'm gonna ask you to collect yourself and introduce yourself the way you want to be known. And then I'll I'll ask you a question, and we'll keep talking.
Sounds good.
Alright. And, Rob, you can leave all this in when you're editing. Go ahead.
Aileen & the Family History 5:02
Hi. My name is Aileen. I am a mother to a type one diabetic daughter who will be nine very shortly, and we actually just passed her ninth anniversary of diagnosis because she was diagnosed at 10 old. Wow. And she also has celiac disease.
Oh my goodness. Is there other, autoimmune in your family?
Nothing that's been clearly diagnosed because we have a lot of people that are too scared to go to doctors.
So there are people you feel like might have celiac?
Possibly. We all did get genetic testing after she was diagnosed per her doctor. I have one of the genes, and they said it could, at some point, potentially be become celiac, but they said unlikely because of my age. Okay. But no one that's been officially diagnosed with celiac in our family.
No one that's been type one. One very distant family member at some point mentioned it, but no one else can say, like, oh, yeah. She definitely did. It was, like, my great grandmother's, like, great niece or something totally random.
With with the other people in your life that are afraid to go to the doctor, what do you think they'd find if they went?
I believe my mom probably has, like, psoriasis, which I believe is autoimmune. And I believe on my husband's side, there is a couple of people that have some thyroid stuff. I just don't know exactly if they have diagnosis or what exactly.
Gotcha. Tired, hair falling out, overweight, won't go to the doctor?
Yes. I I do know my brother-in-law prefers to eat gluten free, but I again, I don't think there was anything, like, officially.
That's a thing he discovered one day in the bathroom. Yeah. While he was talking to Jesus, probably. I gotcha. Well, I why won't people take a pill?
I don't know. I have to take one myself. It's pretty simple.
Yeah. What do you have?
I had papillary thyroid cancer.
Did you? Oh, so you're taking Synthroid?
Yes.
Oh, okay. How old were you when that happened?
It was six months prior to her diagnosis. So Right after you gave birth. Year.
No. But right after you gave birth, though.
Yes. She was born at the very May 2017. I found out in August 2017 that I had cancer.
Oh my gosh. Is was she your first?
She is my third daughter. Your third daughter? Four. Okay. Yes.
How old were you when you had her?
Again, I'm gonna have to do that.
It's nine years ago. It's easy. Take take 10 off and then add one back.
Oh, okay. Yeah. That makes it easier. So then 42 minus 10.
32.
32, and then it went back to 33.
You were 33. Yeah. Yeah. See? It's easy.
Math is not tough. How how old are your children? She's nine now, but how old are your other two?
I have a 13 year old daughter. I have an 11 year old daughter. She is my nine year old, and then she also has a six year old brother.
Okay. Wait. Wait. Wait. Hold on.
You how many kids do you have?
Four total.
Four. I didn't know about the boy, I guess. Okay. And the rest of them not having any issues?
Currently, no. My oldest, we have actually taken her to my daughter's endocrine for a follow-up because she has some symptoms of some stuff, and I was not happy with her thyroid levels when the pediatrician ran it for me.
Mhmm.
And I was like, with our family history, I really don't feel comfortable with this number. I think it was, like, a 3.7.
Oh, no. Yeah. That might need meds. Does she have symptoms?
Yes.
Yeah. She needs meds,
well, they would not they would not, agree with me there. So I took her to the endocrine for follow-up, and I think they had, like, went down a little bit. So she said right now, we're not going to medicate. But it's almost been a year, so we might follow-up again.
I would tell that doctor two point one or over with symptoms, I wanna do something. Not up to
I said I would feel pretty pretty bad if that was my numbers.
Yeah. Yes. Well, yeah, keep pushing if you can. I know it's it's exhausting to fight with them. But, you know, the thing the simplest thing to do would you could just call around to other offices, give them a two sentence explainer about what's happening, and say, is there a doctor in the practice that would be comfortable, being a little more forward thinking for my daughter?
And then just wait till because one of them will say yes, and then you might have to hang up on a few people. But one of them will say yes, and then you run her in and they'll give her the meds.
Yeah. She's she seems, like, more tired than her peers. She definitely has like, when she brushes her hair, I see her hairbrush, and I'm just like, that's not normal.
Is she gaining weight?
A little bit. Yeah. Yeah. But she's also of that age where you're supposed to gain, like, kind of a lot of weight that, like, prepubescent kinda
Yeah. No. I get what you're saying. But that even this tiredness in the hair and everything, it's just you know it's coming if it's not full force on her already. Imagine if she had more imagine if this person who canceled on me at the last minute, whose name I won't mention, but damn you, lady.
And then I was already I was excited to talk. And but now I got Aileen. It's much better. Oh. But imagine imagine if she just had more energy.
Like, how great that would be for her.
I agree. Yeah. I I I try. I I've listened to your thyroid episodes. I even I'm like, well, I'm also in New Jersey like you, so I'm like, can I get into Scott's doctor
Can I tell you what?
That you mentioned.
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But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you, but I'm set up to be called if I don't respond to the email because I don't trust myself a 100%. So one time, I didn't respond to the email, and the phone rings at the house. It's like, ring. You know how it works.
And I picked it up. I was like, hello? And it was just the recording. It was like, US med. Doesn't actually sound like that, but you know what I'm saying.
It said, hey. You're, I don't remember exactly what it says, but it's basically like, hey. Your order's ready. You want us to send it? Push this button if you want us to send it.
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She broke our heart. She she actually has been a lovely part of our lives. But, her husband got this really kind of fancy job with the the French government, and they are moving. And she is she's out. She's not gonna practice anymore.
There goes my luck of trying to get into a good doctor.
Yeah. Yeah. Well, actually, Arden and I are are gonna throw a dart at a board today and pick an endo for her, so we'll we'll see what happens with that. But but yeah. No.
She she just got an opportunity, and she's like, I'm gonna retire, and she's off. And and we just had all of our blood work run for the kids and everybody. So I was texting with her the other day, and she's like, you just caught me. Ten more days, and I'm done. And then she's like, follow-up with me on this one thing.
I tried to text her last night, and her phone didn't work. And I was like, uh-oh. I so I just switched I switched I switched over to email. Was like, she is really getting out of here. Oh my gosh.
Well, I I wish you luck with that. So Thank you. Yeah. Yeah. So tell me a little bit, was your pregnancy fairly common for I mean, you had had a number of them already.
So how how did it go right before the diagnosis your diagnosis, I mean?
Her Own Cancer, Right After Giving Birth 14:05
Yeah. The pregnancy was great. I believe it was while I was very early on in the pregnancy. I had switched primary doctors, and I kind of did have some complaints of thyroid esque type symptoms Mhmm. Saying, like, I was tired and hair loss and that sort of stuff.
But, again, I was newly pregnant, so they kind of were like, you're borderline. We could put you on a low dose Synthroid kind of thing. So I said yes, and we increased it, you know, with weight gain, you kind of have to change your dosing sometimes. So we increased that as needed, and I was feeling pretty good. And they said to come in, I believe it was three months post postpartum was when they would check again because then you have the weight loss, so you would need a a change in dose again.
Yeah. Yeah.
And so I went in, and I believe it was the nurse practitioner even asked, like, have you had an ultrasound since being on this medication since it's been just about a year, a little over a year? And I said, no. She said, well, that's kinda common practice. And I was like, oh, okay. So she gave me a script upon leaving for an ultrasound, and I went for that pretty quickly.
And I remember while I was lying there when they were doing the ultrasound because I've now had three pregnancies and ultrasounds many, many a times, I said, they're taking an awful lot of pictures. This is something's wrong. And I went home and I started googling, and I was like, have thyroid cancer. That's it. Wow.
Look at you.
So I was lucky enough that one of my sorority sisters well, not lucky she had it, but lucky enough that I had someone to reach out to because I had recalled a sorority sister that had thyroid cancer after delivering her child. And I reached out to her even before I officially had gotten the diagnosis and was like, I need all your information. I'm about to, you know, drive myself insane googling and being scared. So I was lucky to have a resource in a sorority sister, and the ultrasound did come back. Again, another fortunate thing, I believe that they normally wouldn't biopsy until the nodules are more than one centimeter, and mine was, like, point 99.
Mhmm.
And they were like, that's close enough, and you have a couple others. Let's send you for a biopsy. So I went for a biopsy, and even that endocrinologist that was doing the biopsy told me that the pattern of my nodules were not consistent with cancer, but sure, she'll still biopsy. So now I had an ultrasound that seemed kind of not wasn't going to be like, it was kinda offhandedly like, hey. You should do this.
Yeah. Then
then even after the ultrasound results, they were like, it's close enough. Let's do this. Now I have an endocrinologist telling me, not not the pattern of thyroid cancer, but we're still gonna biopsy it. And it wound up being, yes, cancerous. They did not biopsy one of the other nodules because your thyroid looks like a butterfly.
Yeah. They biopsied the nodules on the right half, but not the left half because that was the biggest one, and they were able to get two of them at the same time. Mhmm. And they said that when they do the surgery to remove the thyroid, they will then test the pathology of the other nodules, and it wound up being that all of them were cancerous. Wow.
So they removed the entire thyroid at that point.
No kidding. And you're dragging four kids around with you at these doctor's appointments?
Three. But yes.
Did it make you take the baby? That was nice.
No. I so a lot of times, I did take them with me to the biopsy. They actually didn't tell me that I should've had someone to be able to drive me home because you wouldn't be able to turn your neck.
Oh.
And I was like and I was like, no. No. No. I said, I got a babysitter. You are doing this now.
I said, I will figure out how to get home. I will not make turns. I will drive straight.
I have a babysitter. I'll sit out in the hall if you need me to for a day or so, but I'm I'm not going home and coming back here. You don't understand?
Yes. I was like, it is too difficult.
Were you having any postpartum symptoms at the same time?
Nothing crazy. No. I was I was okay. That just made me a nervous wreck thinking about because the other thing about papillary thyroid cancer is that they cannot tell, at least my understanding the way it was explained to me unless things changed or I was told wrong. They cannot tell if it had spread to your lymph nodes through any sort of testing.
That's something that you find out in surgery.
Oh, fine. Jesus.
Right. So I didn't know if I was gonna be able to continue nursing my daughter. Mhmm. Or
if you'd wake up with more more cancer than you knew about.
Right. And if I woke up, if I would need radiation, which would also mean isolation from my family, so we kind of needed to have a plan in place for where they would be living or I would be living. If I needed to get the radiation, I wouldn't have been able to change the baby's diapers. Like, I would you're not supposed to even share, like, a toilet with other people when you're going through that. So there was a lot of thinking and planning for scenarios that you didn't even know if you were gonna need.
Right. I wonder why you can't share a toilet.
I'm not sure. I just know that, like, you like, you need to be, like, completely kind of isolated. Radiation?
Yeah. Do think it would shrink testicles? I
don't know. I that would
be a great service for older men.
I mean, I could be recalling slightly wrong. I just know, like, you're supposed to, like, really be, like, away from other people.
No. No. I've heard that before too. I I am interest I'm not I'm not interested enough to sit up and check, but I am interested.
You're not putting that in your chat, GBT? I'm not.
No. I was like, it's interesting. I'll think about it later, but I'm not gonna find out now. I'm I'm happy enough with the saggy balls joke, and I can move on. So well, wow.
That's so much. It just it it really does feel like a lot, but that's nine years ago now.
Yes. And that was so I had this we found out in August, and I had the surgery that October Mhmm. Of 2017, and then my daughter was diagnosed 04/02/2018, so less than six months after my surgery.
Oh, just when you were relaxed and thinking, hey. I'm not gonna die. Everything's gonna be okay.
Right. Exactly. I, you know, I stopped right in the wheel.
What what was what was everybody getting? Was it or was it depressing? I think my will would be depressing. I'd start writing, like, I have nothing to give people.
Yeah. No. It was more like worrying about who would take care of my kids. No. Those
yeah. Well, listen. I I hear you.
I I had a lot of them.
We I had a lot. When we sat down and did that, I I I definitely shouldn't say this, but you start going through people in your family. You're like, no. No. Then you get the one you're like, I mean, I guess this is acceptable.
I know.
And I'm sure they're thinking that about me while they're doing the same thing. They're probably going through it like, oh, no. No. No. No.
The Baby Gets Sick 20:53
Oh my gosh. Wow. Okay. So how did the diagnosis come up for your daughter? What was the first I mean, she's only a few months old.
What's the indications?
Yes. So her oldest sister was just in pre k four. It was her first experience at school, and then the middle daughter was still at home with us. And so when Ainslie was oh, and sorry. My husband also worked nights night shift at the time.
Mhmm.
So I was doing a lot of just kinda, like, co sleeping, nursing overnight, like Yeah. Minimal getting up out of bed for myself. So I didn't really notice a lot of the symptoms until, like, hindsight when you talk about it because, you know, she wasn't getting a bottle where I could see how many ounces she was taking in. I wasn't really counting how many times we woke up because I kind of was just like Exhausting. Like I said, I wasn't getting in and out of bed.
Yeah.
But so her oldest sister was in school, and I don't recall her coming home being sick. But when Ainsley got sick and was vomiting one night, I kinda was like, oh, great. Like, we just brought home a bug from school type of thing. Mhmm. And our pediatrician at the time in the past had let my older daughters use it's called Floristor.
It's a a probiotic, and it's a flavorless packet, you can mix it into applesauce, and it's supposed to be good when you have a stomach upset.
Okay.
And so I remember I called the pediatrician asking because on the box it says under one, do not give. And I was just like, should I she's under one. Can I not give this to her? And the pediatrician said no. And I was like, okay.
Cool. And they said, do you wanna come in? And silly me, said no. I was just like, no. No.
It's okay. It's just a stomach bug. I don't need to come in. I just really want to know about if we could use the Floor Store. And so I I didn't go.
I didn't even take my my sick kid to the doctor on the day of her diagnosis.
Well, that happens to everybody. You know that. You've been listening for a while. Right? Yes.
Yeah.
Yeah. So we kinda dealt with it at home for a little bit, and I just remember I was, like, pacing. I I did a lot of baby wearing since she was the third, and I was pacing because she was just being so unsettled. Like, she was just tossing and turning in her sleep and just restlessness. Like, she wasn't necessarily crying, and so it was just a couple of nights of that.
Then then the vomiting came, and I remember that it was a Friday night, and I was pacing again, waiting for my husband to kinda come home. And then she threw up everywhere, like, all over our bed, and I was like, great. Now he's gonna come home from a a shift, and I need to make this whole bed so he can get to sleep. And at the time, my parents lived about forty five minutes away. So that morning, I remember I called my mom, and I was just like, I was up all night.
I have so much laundry. She has, like, no clothes left. We have no sheets left. I'm like, it's the birthday party today. That's what I posted about you.
I guess I should also add that into my long winded story. My all my children have similar time frame birthdays, so we were doing a huge family birthday party at my in laws house.
And that was that day?
That was that day, that Saturday. Okay. So I was like, mom, I need you to come out here. At the very least, that way I can go and, like, watch the girls blow out their birthday cake, and you stay with Ainsley since she's so sick. I was like, but I I definitely need help.
And and
I I by the way, I'm dying for that day when my kids admit finally that I'm reasonably helpful to them. That that your mom must have been thrilled, not about the baby being sick and missing the part and everything. She she was probably just like, I knew it. I knew they'd need me again.
Well, my parents were still both still working at the time. They weren't retired, so I was lucky that it was a Saturday. Oh, oh,
I see. I see. So she if you call her the day before, she'd be like, I'm at work.
I can't help you. Yeah. Yeah. Yeah. Me too.
Okay. So at this point, when you're calling your mom, it's really more functional, though, about the day, right, about the laundry and the preparation and not missing things. You're still not thinking something's really wrong with the baby?
Not not at the exact moment I called her because I called her kinda like a 9AM ish type thing because I was trying to let my husband sleep before he had to be up. And Right. You know, of course, I had three kids at this point under five, so, like, they all were up. So 9AM felt pretty late in the day. Yeah.
I know how you
feel. So yeah. So she started to head out. Like I said, it took between forty five minutes to an hour. At that point, though, she threw up a whole bunch more, and I remember I was like, it's a Saturday.
They close at, like, one, like, whatever their shorter office hours were. So I called back the pediatrician now, and I was like, this is no longer normal. And they said they said, you know what? Honestly, if she's been throwing up that much, we don't think you should come here anymore. Even if it is a stomach bug, you're gonna need IV fluids.
Just go straight to the hospital at this point. Okay. So I waited for my mom to get there and sent my husband and my other two daughters to the birthday party. And I was like, don't worry. She's coming.
It's just fluids. It's just a stomach bug. We'll be in and out. Like, we'll be there for cake type thing. Mhmm.
I love your Jersey approach to everything. You're like, it's gonna be fine. We'll just keep doing it. Everything's terrible, but I won't stop.
Oh, well, actually, we were in New York at the time, and our house was sold. We didn't have a new house, so that just adds a layer.
Oh my gosh.
By the way.
Jeez.
Yeah. So we had, like, half a house packed up into pods.
Shit show. Oh my god. Yeah. That's terrible.
It was, like, everything at once.
Yeah. No kidding.
Yeah. So and I remember driving to the hospital is where I gave birth to all three girls. And my mom was there, and she fell asleep in the car seat. And I was like, maybe we don't have to go. She's sleeping.
She's probably better. Then And I was like, no. It's okay. I'm gonna we're gonna still go. You know?
Yeah. But at least she's no longer crying. She's no longer vomiting, like, whatever. And we get to the emergency room, and it was packed. And because she wasn't crying, there was nothing in her airway.
I told them what I thought it was, and, you know, they kinda were just like, okay. Sit and wait. So I I don't remember how long we waited, but it was a couple of hours. And then when we finally got taken back, that's when it felt like a TV show.
Right.
When they must have done ran her blood sugar and couldn't believe it, and neither could I.
Yeah. I realized they had a baby in, like, serious DK just sitting out in chairs for hours.
Yes. Yep.
Gosh. Did
she pages over the loud system. I remember them being, like, step back and just people flooding the area, then throwing, you know, questions at me. Like, is there anyone in your family that's a diabetic? Do you know what type one is? I was like, well, what like.
Trying to figure out via context. Oh my gosh.
Yeah. And the on call endocrinologist again, because it was a Saturday, was apparently at her child's soccer game. So they kinda were like, this is what we think it is. We think it's diabetes, but doctor so and so is she's she's coming in as soon as possible. She's on her way.
And But her son's the goalie, so we're gonna have to wait a little bit. He's so proud. Yeah. Wow. My gosh.
Did she I mean, I don't wanna I mean, it's been nine years, so I imagine you can handle it. But did she almost die?
I remember them like, again, I was nursing. She was exclusively breastfed at this point still. Mhmm. And I was just like, she hasn't eaten in hours. And I was like I was like, does she need to eat?
Is she okay? And they were just like, we need to save her life first. They were like, do not worry about that. Like and I was like, well, I thought eating needed to be done for living too, but, like, they were they were just like, kinda like, yeah, we need to save her life before anything. And I think she was hooked up to the all the different stuff.
It was over forty eight hours before they let me hold her, touch her, do anything. And they didn't teach me teach me anything about diabetes. I didn't do anything. They were just kinda like, she needs to be off all of this equipment first before you can even know anything about diabetes.
Yeah. Well, they did they those people did a great job saving her. I it sounds like really cool.
They Yes. Wow. We were very very lucky, I guess, that the pediatrician at that point didn't even delay us. Like, I didn't go to a pediatrician to then be sent to the hospital.
Yeah. To add extra time into the steps and everything. Wow my gosh. Woah. Jeez.
That's a lot. Did you was there psychological, like, impact from that afterwards? Did you find yourself, like, nervous or anxious or is there trauma
that you
took from it?
I knew nothing about type one diabetes. So I will say, especially with how young she was, and now I know I was totally wrong, but at the time, you're just like, oh my gosh. Her life is not gonna be normal. She won't be like, how can you go to school? How can we go on vacations?
Like, is she gonna be able to go away to college? Like, just like when you think like, everyone says when they have a kid, they're like, do want a boy or girl? And everyone always says, you just want a healthy baby. Like, that's like, that just, like, made this so much more true. Like, especially even having a kid after her was just like, I don't care.
Just want a healthy baby because, like, it's just so scary to think about the alternatives. And so I just kinda sat in that for, like, two days. Like, I I think I left the bedside once to quickly shower and say hi to my other kids. Yeah. How was
the birthday party?
It looked cute. I saw pictures.
I saw
pictures. Oh my gosh. The family did a great job making them feel loved and special.
Nice. I bet you the party the next year was huge.
We all don't live near each other anymore, and we got to this was the first time there's nine grandchildren spread out across The US, and we met up in the Poconos. And it was the first time they were all together, And there's there's a lot of them that are born in April.
Day hold on. That day was a meetup from around the country?
No. No. That was this more year. Recently. Okay.
Okay. Alright. I was like, I I don't see how that sort of getting worse. Okay. But so since since then, like, you guys have all kinda, like, spread out a little bit.
Yeah. So we we have, like, kinda we try and get together once a once a year if we can. Nice. But our family from Texas was able to join us this year. Oh, very nice.
So yeah. Because I have my daughter is the very end of March, then I have my son is April 2, and my other daughter is April 15. My husband is April 14. My niece is, like, the twenty second. My nephew is the sixth.
My father-in-law is the sixth. I have a sister-in-law that's the seventh. So we literally celebrated, like, 10 birthdays at once this year.
Yeah. I'm gonna move on. I wanna ask you about raising a baby with type one. But first, I I'm so confused and it's meaningless to the story, but I wanna understand. Is this is your son from another marriage for your husband?
Or, like, you talk you you don't when you lump them all together, he's not there usually. I'm trying to figure out what that's about.
Oh, he no. He's the same same family. It's just, like, I guess, because he came after the diagnosis.
Oh, Oh, okay. I see. I see. That's why he's not in the stories. Okay.
Alright. Sorry. I kept thinking, like, does she not like that kid? Because she's really
No. He's he is a funny you would you would find him funny.
Oh, awesome. Okay. Cool. So, I mean, nine years ago, what's it like raising a 10 old with type one diabetes? Like, what when you finally get some knowledge, what does it look like, and and how did it actually work out in reality?
It was so confusing. So, again, I know I said I'm in New Jersey, but at the time, we were in New York for about a month, a month and a half, maybe post diagnosis. So we had when you get diagnosed in the hospital, at least there, I think it's the same everywhere. Usually, whichever on call endocrinologist is there, that's, like, kinda who your doctor is unless you choose to switch. Okay.
A Teaching Hospital & the Cake Advice 33:19
So we had this lovely, I don't even remember her name, female doctor. She seemed great. However, it was a teaching hospital. And whenever I called the on call, I got a lot of young male residents that knew nothing about nursing. So it was very, very hard to call and be like, I just breastfed.
What do I do? Her numbers are this. And they'd be like, well, how much milk? I'm And like, I don't know. I breastfed.
And they're like, what do you mean you don't know? And
Well, it's not it's not clear. I can't see through it. Yeah.
Yeah. Yeah. So And they just I felt like they were constantly trying to tell me not to nurse her. And I was like, well, when you're hungry, do you eat? Like Oh, because they didn't
have an answer. They're like, you know what the problem is? It's that milk you're giving her.
Yes. They were trying to very much encourage me to stop nursing. I felt there was a big push, not necessarily from the doctor, but from when I was making these phone calls from people that really didn't have good answers, I guess. Yeah.
Wow. That sucks. My gosh.
And then we also had a horrible, I guess, was the diabetes educator. She was a bad experience too. I'm glad I only had the one appointment with her. Again, this doctor seemed amazing, but I guess just the way this particular hospital system worked, I didn't get much face time with her in the month and a half. Yes.
She The
person who knew were didn't talk to you.
Right.
Yeah. What was the you you not many people called, like, the medical staff horrible. Like, what what happened with that one person that you were happy only to have seen once?
So I will again preface this with that my child was 10 old Yeah. Exclusively breastfed, and we had started baby led weaning, which is basically just like you give your child softer foods, but whole foods like bananas, or if you soften up apple in the microwave, you can mash up, like, sweet potato, avocado, just regular food. We didn't do baby food or the baby cereal. Mhmm. And you just let them kind of explore it and eat it however much they want.
Like, you just kinda put it on their plate, if they eat it, they eat it. If they don't, they don't. So she was getting almost all of her nutrition from breast milk still, and we met with this CDE that told me because I we were having issues where I couldn't give her insulin. Her carb ratio, I believe, was one to 60.
Okay.
So for even a half a unit, that's obviously 30 carbs. My kid was not eating even close to 30 carbs.
Yeah. Yeah.
So she told me I should give my kid cake to try and get to give her enough insulin. And I was just like
She said breastfeed her and then get give her cake to get her up to 30 carbs.
Yeah. She recommended she's like, I don't know. Why don't you just go get, like, some Entenmann's cake or something? And I was just like, no. Wait.
She actually said Entenmann's? Yes.
Is that is that local to us? Is that a thing not everybody would know about?
I I don't know. But I was just like, you you clearly like, no. I'm not giving my kid cake for breakfast just to give her a half a unit of insulin.
You just say, lady, I'm a person who just said self led eating, and you think I'm gonna give my kid a prepackaged cupcake? Is that what you thought was gonna happen?
At least at least it was a soft food. I don't know.
Was she young?
She was, but she had type one herself. But, I mean and I don't judge anyone that wants to eat that. I just I was still learning everything myself.
Right.
And I was just like, I'm trying to feed my kid healthy. Like, no.
You you know, it's probably what she uses for her lows. Maybe that's why she said it. You know what I mean? How do you think she's can you imagine if she's listening right now? She's like, oh, that was me.
Mean, I sure hope she didn't give anybody else that advice. Again, I mean, maybe if it was like, oh, I couldn't reach 30 carbs with dinner, and it was like, okay. You're giving broccoli, then maybe give, like, a little bit of cake to help bump it in there. Like, she was just like, yeah. Like, just, I don't know.
Give give a slice of cake.
The good news here is is that your episode's gonna be called let them eat cake.
Oh, I like that. That's awesome.
My gosh. Okay. Alright. So your biggest problem is that that the the breastfeeding is not getting up to the level that will even be supported by a half unit of insulin. So, I mean, I was in this situation with Arden.
Arden was diagnosed when she was two years old, but she weighed, like, seventeen pounds on diagnosis day 19 when we left the hospital. And I had to teach myself how to inject, like, drops of insulin. So did you end up doing that, or what did you
We did try eyeballing to try and get what we were guesstimating like, well, what I was guesstimating to be even half of the half the unit by but, I mean, anyone that can take a syringe that's listening and look at that, that's very, very miniscule and hard to do. Yeah. In in a drop
is a is a it's a leap. You're doing your I I I don't know if you ever heard me talk about it, but I I once put insulin into a dish, and then I put food coloring into it so that I could see it. Then I drew it up, and then I would just practice pushing on the plunger till a drop came out. Like, so I could do it by eye or or without my eyes. Excuse me.
And so I'd watch. I'd feel the pressure, feel the pressure, feel the pressure. I'd be like, that's a drop right there. And then, of course, I didn't use the insulin with the food coloring in it. That was just for practice.
And then I would I would draw a little bit out of the syringe and then put the needle in and then just try to mimic that, like, one drop coming out thing. That was not fun.
Would have been better advice than cake.
Well, thank you. Yeah. Can you just give her cake? Well, no.
But stop. I guess for every meal just so she can get insulin.
Yeah. Every oh, that's a good point. Right? Every time she breastfeeds, then she gets cake.
Yeah. Yeah.
It's not not a well thought out plan.
No. And so we were she was definitely having, like, ketones as well. She actually went into DKA a second time not long after diagnosis, basically, because of not being able to give enough insulin.
Yeah. My gosh. How long did this all go on for? How long did she breastfeed, and and was this a struggle?
Dosing Drops & Breastfeeding to 13 Months 39:46
I breastfed her until 13 old, so for about another three months after diagnosis. That's when I did also all four of my kids, so that was kinda my goal. And but she did start eating a little bit more after that too. Like
With with the the choosing from, like, avocado and apple, and you kept giving it did you keep giving it to her hoping like, oh my gosh. Maybe she'll eat this and we can stop with the breastfeeding, or you really wanted to get to that thirteen months?
I felt like because breastfeeding is more than just like nourishment. It's also, like, a a comfort thing too. And I felt like with all these injections and all this stuff, like, I didn't wanna make, like, another change
Mhmm.
In that sense. Like, I kinda felt like that's, like, a bonding thing that is also a comfort thing. I really didn't wanna just be like, oh, because I can't dose for it, we're gonna drop this.
Yeah.
So I did want it to be more because it felt like that's just where our time had come to.
Are you working at that point or no? Are you a stay at home mom? Or how what's your
I was a stay at home mom. Yeah.
Was gonna say, I don't know how you would keep a job during all that.
No. Yeah.
Jeez. So then as she gets bigger, I guess the the insulin gets easier. But nine years ago, did she have a CGM, or are you just using a meter?
We did get a CGM, not at the hospital like I hear some people are fortunate to get. We got it right before moving, so I think it was actually the week of her first birthday, so about two months after diagnosis.
Okay. And, obviously helpful?
Yes. Oh my gosh. Yes.
Which is a does it did it make you immediately I I know when Arden put one on, as soon as I could see it, I thought, oh, how what was happening before? Like, it almost made you feel like don't think about that. Like, don't think about what might have been happening before.
I think I was finger pricking so much because I was so neurotic
Yeah.
That I and I don't think her numbers were ever really low. I have to be honest.
Because she just didn't have enough insulin to make that happen.
Yeah. Yeah. I don't even remember what her basal was. I do remember that we did leave the hospital with the two types of insulin, so I know she was on basal. I can't imagine it was much, though.
I remember a time when Arden's basal was one unit a day.
It probably was something like that. I would've
That gee. That that's freaking me out a little bit. Now it's one unit an hour.
Oh my gosh. She still has pretty low basal needs.
Nice. Do you think she has any, like, function left? Do you do you ever see, like did you see honeymoon or anything during that time, or would that even be a thing you'd know to look for?
I mean, I feel like I've from, like, being in your Facebook groups and listening to your podcast, I feel like I've seen people say they've had to completely go off insulin or they, you know, just needed long acting or just needed short acting based off of different scenarios. She's she's always she's been insulin dependent since that day. We've never had to back off Okay. Anything. Yeah.
So I don't I don't recall really a honeymoon phase.
What was I'm gonna speed up a little bit because I'm interested in, because you've seen it through all the different, like, iterations, right, and and age groups. So what were there times that felt harder, times that felt easier? Did you have to use day care? Did you have to like, what was it like sending her off to kindergarten? Can you walk me through the, you know, the timeline of her life?
Staying Home, Starting School & a Celiac Diagnosis 43:21
Yeah. So I actually we moved right after not long after. She was one. So I decided to continue to stay at home because of the move and her diagnosis. I was I I'd worked for New York City Board of Education as a school psychologist prior to my children and still had all my certifications and everything.
And when we moved between state lines, I never even, like, looked into how I needed to change over all my stuff. Okay. So I just have continued to stay at home because we couldn't really see a life otherwise either. Mhmm. When she was about to when she would have been old enough to go to pre k three, I did discuss it with her endocrine.
I said, do you think it would be more beneficial for her to start to get used to someone else caring for her other than me, or do you care if I keep her home? Because I really wanna keep her home another year. But I I really love our new doctor here in New Jersey, so I very much trust her opinion. And she said that she felt, you know, just doing pre k four and then kindergarten would be fine. We didn't need to push it for three.
Mhmm. And also at this point, had just been diagnosed with celiac at three. So I was also even a little more nervous to send her to school with now two things a nurse would kind of have to deal with. Right. So she did not go at three.
At four, it was pretty nerve wracking. It was September 2020, so they were going to school in masks. Oh, jeez. But luckily, the the primary school is very close to my house. Like, if if for any reason my car broke down, I could literally run there.
Okay. Okay.
So I and it was only two hours and twenty minutes a day, and there is a nurse in the building. So it was a a best case scenario for a very nervous mom like me.
Yeah. Hey. What are the, lead up symptoms to the celiac diagnosis? What did you notice first?
We were having severe difficulty potty training, and not for lack of her wanting to because she actually could not go. She was so constipated Mhmm. And could not it took her hours. And so you can't force a three year old to sit on a toilet for hours.
Yeah. Nor would you want to.
Oh, right. Yeah. So she just she could not potty train because she just it was a struggle. So that was one of the first symptoms I noticed, and it eventually got to I started backing off insulin. At first, I thought it was just a carb ratio change, and so we made her carb ratio weaker.
And I I kept like, I think I changed the insulin to carb sensitivity. We changed basal rates because at the time she was on dash. There wasn't automated back then. So I just kept changing things. At one point, I remember it was summer.
It was July. We were at the beach, and I just had to keep feeding her watermelon all day. And her pump had been, like, suspended. And I called the doctor the next day. I'm like, as much as I would love to say my kid is no longer type one, this is kinda weird.
She doesn't need insulin anymore. Yeah. And we had been watching. They told me they felt that it was not if, but when she becomes celiac because she did test positive for all the markers and everything Okay. At diagnosis.
So I was kinda like, I think we need to come in, but it had been all that COVID stuff, and they kind of were pushing me off. And then finally, when when that happened, when we were, like, no longer giving insulin for much and having these other issues, they said come into the hospital, and we'll do some blood work and all that. So
Living With Celiac (and a Paris Mishap) 47:21
How have you learned to manage celiac? Like, is it a is it how you cook, or is it what you buy? Like, what what you know, some people buy a lot of prepackaged stuff that's, you know, that's supportive, and some people will do their own cooking. What have you ended up doing?
We mostly cook at home. She she's a very great eater out of all four of my kids. She's the healthiest and easiest. So she does a lot of, like, just, like, kinda natural whole foods. Mhmm.
But she's still a kid, and she goes to school. I mean, she eats a sandwich every day just on gluten free bread. Sometimes she likes Lunchables, and I make them with the gluten free, like, Ritz looking crackers. And now there's so many cool products out there that makes her like, her friends were so excited when gluten free Cheez Its came out because now she can have Cheez Its like them. Oh, that's sweet.
Her friends are really, really awesome and supportive because they've only known her to have both type one and celiac. So whenever they have a party or she has a party or just to get together, like, everyone always brings, like, the gluten free Oreos now that they're so easy to find or the gluten free Chips Ahoy. So everyone's really great, and it's really easy. When we're at home, we actually she actually got cross contaminated. We were just on vacation, and she got pretty sick while away.
So that was unfortunate. But at home, we really manage pretty easily. It just takes the spontaneity out of your life. Yeah. Because if you don't have food on you, you kinda can't just go anywhere.
Right. Right. What what is what is getting sick look like?
She was vomiting all night.
Oh, gosh. And and it's just it's a thing you tell people and they just they get is it, like, cross contaminated, like somebody's not paying attention or they bring you something they shouldn't have? Do you have any idea even what happened?
We do. So we were in Paris, and we had these translation cards. And you kind of, at that point, have to know you're taking a risk and hope for the best. I had done some research. There's, like, celiac travel Facebook groups and stuff, and we had the names of some places.
But we were with a big group of family, and they all didn't wanna eat at a 100% gluten free restaurants every single time. And I had went to this one place that was near the Airbnb the night before and brought the card and asked them. And I was like, hey. Like, if we come in here tomorrow and they were like, yeah. Yeah.
We we're going for crepes, and buckwheat crepes are made with buckwheat, which even though it has the word wheat is actually gluten free. Mhmm. And so I talked to the guy and I was like, okay. Great. Thought I had done, like, my due diligence, and we went the next night.
But I guess even though the card had said, like, it needs to be used separate utensils and separate cooking materials, that's the only thing we can presume is that they must have used shared cooking preparation space or, you know, touched or something Mhmm. Because hers definitely did look different. You could tell we were there for six days. We had bunch of crepes in other places where she didn't get sick. The buckwheat crepes has, a darker flour, so you could tell the difference by looking at it.
I see. So we know she did have a gluten free one. So I think it was just
It was contaminated. Yeah. Yeah. My gosh. That sucks.
I'm sorry. I'm it really just it is a lot. Like, you have a really good attitude. Like, is it are you high? What's going on?
Are you on pills? Why are you so happy?
I I think there's days where you can beat down. I guess I'm I'm on a day where I'm not beat down because she is definitely thriving as a whole.
Yeah. And so she's got supportive friends. You figured out her eating. You figured out the diabetes is the next piece. So how long was she on MDI?
Pumps, a Move & Diluted Insulin 51:24
When did she start I mean, I assume she uses a pump now?
She does. We are on Omnipod five now, which is technically our third pump if you count Dash as a separate pump. She used a Medtronic at first. When we moved to New Jersey, that was the second time she went into DKA, was during our move. I could smell the ketones on her breath.
We were in we were in between the houses, like, had closed in New York, moved. We were staying in my sister in law's house overnight because we were gonna close on the house the next day. Mhmm. And I could smell her breath, and we had the Dexcom at that point so I could see her numbers. And I called the the on call New York doctor, and I was like, these are her ketones, and, you know, I'm so scared.
Like, she's her breath smells just like when we brought her into the hospital, and they were basically like, you're over state lines insurance. We can't help you. Like, if you're nervous, you have to go to a hospital.
You're over state lines?
Yeah. I guess because they couldn't bill it, and they couldn't give medical advice over phone, and because they couldn't see us, and they were kinda like, you have to go to somewhere in New Jersey.
Okay. And then what'd you do?
Well, I was just like, okay. I'm just gonna push more insulin overnight. We went and closed on the house, and then I went straight to the hospital from there. What
is wrong with everybody? And
she was in DKA. Oh
my gosh.
But it was the most like, not that I'm glad she went into DK, but it was kind of like one of those blessings in disguise because we couldn't get an appointment, you know, obviously, immediately. Usually, there's a wait list and stuff for doctors. This was Memorial Day weekend of May, obviously. I think we had an appointment for, like, the end of June, and the doctor we had an appointment with wound up being the oncoendocrinologist. So we got to see her right away upon moving, and she's, like I said, fabulous, and I very much value her opinion.
And so once we saw her in the hospital, I explained what was going on, why, basically, I felt we were in DKA again, and that's because I couldn't give insulin. And oh, and also the New York would not give us diluted insulin because that was something I had read about on Facebook groups and stuff, and they just would not support diluted insulin, the New York practice.
They wouldn't or they didn't know how to? Do you ever get a feeling for what that was about?
No. I don't remember why. I just know that was not we were not given that option despite me definitely knowing about it.
Yeah. And and you and you pressed a little bit, they're like, we don't do that.
Yeah. And then so she was like, okay. No. No. This is all wrong.
She's like, we are getting you on a pump right away. But for now and the hospital had a pharmacy like, the hospital pharmacy, and that was it. She got us on diluted insulin that second in the hospital and wrote up all new carb ratios and taught me how to change everything based off of using the diluted insulin. That way, essentially, you could then drop what looked like a unit, but it really wasn't a unit.
Because No. No. I know. Yeah. I I I I know what it is, and I just I actually just interviewed somebody who used it really successfully, you know, when their child was younger.
It's weird for them not to know it was an it was a pediatric endocrine office? Yes. Oh, okay. Alright. I don't know what to say.
That that that sucks because that would have really been helpful for you.
Yes.
Yeah. Yeah. You're like, yeah. I know. Thanks.
Yes. Oh
my gosh. Has anything gone right in the last ten years?
Absolutely. Of course.
Tell me about it a little bit.
I mean, just in terms of going right, yes. The her three siblings, they all have tested negative for all antibodies. We've done trial on that on all three of them. Her two older siblings have neither of the genes for celiac that they tested for, And her younger brother does have one out of the two, but he does not show symptoms yet. But he does get tested every other year Mhmm.
Unless we see symptoms. So so far, he does not have celiac.
Okay. Well, that's good news. Yeah. Seriously. How would you characterize the diabetes as far as impact on your life?
Celiac vs. Diabetes, School & Devices 55:54
Like, is celiac more of a day to day impact than diabetes? Vice versa, is it not fair to compare them to each other?
I feel like diabetes takes so much more thought in terms of, like, making the decisions. For example, we just it's her first year taking state testing, So it was, like, you know, planning for that. You don't necessarily want her to be too high or too low. I don't wanna disrupt the other kids that are taking the test with her alarms going off.
A lot of a lot more planning?
Yeah. Definitely a lot more planning and a lot more, like, trying to predict the future. Yeah. She dances on Fridays. She goes from four until 07:45 at night with no breaks.
So, like, you have like, we figured it out, but that takes a lot of planning that other kids don't have to think about.
Yeah. Is it impactful on her? Do you see does it drag her down?
I think sometimes. I know that last year was harder. She hated going to the nurse all the time. And this year, we she is treating Lowe's in the classroom, and her friends have actually taken up to they have a schedule. It's written in her folder because I guess they were, like, fighting over who got to walk her to the nurse.
They were
they were fighting over
who got to get out of class.
Yeah. Yeah. So the tea the teacher had to make up, like, a little schedule. So I don't think she's as down and out about it as much anymore because I get like, not that it's cool, but, like, it's it's not, like, a burden, I guess, because she's not, like, going to the nurse by herself and missing out on something. There was a year where she, like, was missing art because she had to leave for the pre bolus for lunch during art, and that was, like, her favorite.
And I I spoke to the school, and we worked it out. They're they're pretty flexible and accommodating when when within reason, of course. But they they've definitely been good partners in this.
Out outside of her friend group, is she okay with people seeing her devices and knowing, or does she is she more private? How does she handle?
She rocks them. Yeah. She doesn't mind they're usually on her arms, so they're pretty visible except for winter. But, you know, springtime, fall with short sleeves, they're almost always one on each arm.
Okay. There's nothing that she she feels self conscious about then?
No. She used to about her stomach because we actually so celiac is diagnosed on a Marsh score, and she was I think it's, like, Marsh score three c, like, is, like, basically one of the worst, like, where the villi is the most blunted. And because I I mentioned her symptom was constipation, we couldn't use her stomach. And when we did, it would get, like, infected because, I guess, the pressure of her stomach being so bloated and and full pushing on the cannula.
How about that?
So she has, like, some scarring and, like, it it was just always very painful on her stomach. So she's a little self conscious about her stomach. Mhmm. But it's gotten better now that that's all been resolved. But it took a a pretty long time for her GI tract to get back to normal.
Gotcha. Wow. Gosh. That's it it I does your husband help with any of this, or is he hiding somewhere? Or how do you manage the the day to day stuff?
Is it just
He it's fantastic if if I'm, like, gone for the weekend or or anything. He's really good at it, but I generally, because I stay at home, take the majority of the reins.
Yeah. I did. I mean, that's what we did too. I found that well, Kelly and I both found that you try to pass it back and forth all the time. You almost spend more time explaining it, the handoff, to the to the other person.
It just feels like you know what I mean? Like, it's you're like, well, this is what happened today, and so far, this will happen. You know, she was low here, and it feels like she might be more sensitive today and blah blah blah blah blah. And then by the you you try to give that over to somebody, and they're like, ah, I don't I can't it's it's I know that
He's a little more impatient with the highs. He'll he he's he likes to try and crush and catch more. Yeah. He's a little more bolder than I would be sometimes because he just, like, he's just, ah, and just, like, rage boluses.
Does it work for him?
I mean, usually. Yeah.
Then what what what makes you nervous about it, though?
I don't know. I mean, I I think I think I'm more, like, trial and error person. I'll be like, okay. Let's try one unit. Oh, that wasn't enough.
Next time, I'll try one and a half. And he'll just be like, whatever. Two units. Like, he just, like, picks a random number, and it was just like, she could just drink juice if it's wrong.
Oh, look at him after my own heart. Yeah. Yeah. No. I I spent some time the other day looking at a blood sugar, and I was like, this is not gonna do it.
Like, you know, like, these little numbers are just never gonna move this. We're gonna do this all day if we if we keep hitting it, like, lightly like this. I yeah. Well, listen. Does he doesn't listen to the podcast, so that's something he came up with it on his own.
He does not. I did make him listen. Which episode was it? Oh, the one with Katie Beth. Oh.
Was like, you have to listen to this.
Oh, oh, yeah. She was
interested making to that one.
But he yeah. Did what was what's the takeaway for you when you listened to her? I know it's the pivot. Anyway, Katie Bethanne, she is one of the people that went through the Chicago, Isla transplant blah blah blah. She's not using insulin anymore.
What what what did you think when you listened to it?
A Cure in Her Lifetime? 1:01:25
I think this is the first time I've heard something that sounds like there's a potential for a a cure in her lifetime. Like, I'm not thinking five years or even ten, but she's still so young. I think that this has the potential to, at some point, change her life. So I, like, literally I'm actually even already tearing up just saying that. Like, I it's the first time I felt like this there's an end in sight.
It felt hopeful Yeah. Unlike other stuff that you've heard about.
Right. They they've had, like, potential, but not the same kind of potential where it's like, okay. Cool. That's a that's a nice little step up on the ladder. But this feels like it's a huge leap.
And and yeah. So you're that excited by it, but you're still able to be realistic about it because it's not I mean, they did handpick those 12 people. So you you know what I mean? Like, it's not exactly like it's not like anybody could have just walked up and had it happen. They they they picked very specific people who whose health was in a very specific situation, and they're gonna I mean, his plan is to continue to expand it.
The doctor, you know did you ever listen to the doctor when he came on?
I did. Yes.
Okay. Good. Good. Good. Well, that's really I'm I'm and what was your husband's takeaway then?
He was pretty hopeful too. I I don't know that he, like, was as hopeful as me, but, I mean, he thought it sounded cool.
Yeah. No. No. I'd since I I was wondering because it sounds like his he's got, like, a slightly different vibe than yours. I was wondering what his takeaway was.
Yeah. I I I listen. I agree. I think it's I think it's super interesting and really hopeful and definitely something that that I I hope continues on. But I don't know, like, you know, what the outcome will be as far as time goes even if they perfected it to, you know, where it was just like, hey.
Anybody who has type one diabetes? Come on over. You know, don't I wonder how long that would take. If if Yeah.
I mean, the fights with insurance sometimes are ridiculous now. So I can't I can't imagine what it's going to take for it to just get to where it's something that anybody on insurance can do.
Yeah.
That's why I feel more, like, in her lifetime maybe, in, like, fifty years.
Yeah. No. I hear you. I think it's that's more than reasonable. Episode seventeen eighty seven is called Cured Patient nine Speaks if anybody's interested in hearing Katie Beth on the show.
And I hope I hope I can have her back at some point to see how it's going for in a year or so.
I she 's doing great in terms of media. I I don't wanna say promoting because it's not, like, something she's promoting in terms of getting money for or anything, but just getting the awareness out there.
Yeah. No. No. No. No.
She's she's hustling. She really is.
Yeah. It's super it's She wants the world to know.
Yeah. Yeah. It's awesome. Really is cool. Alright.
Is there anything that we haven't talked about that we should have? I know this was a little weird because an hour and five minutes ago, you didn't think you were doing this. So were you did you stop being nervous, I guess, is also a question?
I think so. Do I sound like it?
I thought you were fine. Yeah. I didn't I didn't notice you being nervous. I thought you were a really good storyteller. I like I like how when you jump on, you're like, I'm not gonna know stuff like details.
Well, I feel like sometimes, like, you've asked, like, what was the a one c at diagnosis or the CPAP? Like, some people know those, like, numbers. I definitely I think I was in such a fog.
Oh, please. I don't know any of that. I listen. Pressure me right now on what day Arden was diagnosed? I have no idea.
It was in August. It's the best I can tell you. So I don't know that kind of stuff either. I just asked the question. Sometimes people know the answers and sometimes people don't.
You know? But it's it's a it's very nice of you to jump on. I do wanna know, management wise, how involved are you still in, you know, counting carbs, coming up with bolusing strategies, that kind of stuff?
I I pretty much do all of it. She doesn't eat school lunch, because celiac. So she eats breakfast at home. She kind of has mostly the same breakfast every day. Like I said, she's easy in that sense.
Like, my other kids are definitely not like that, so I definitely understand when people post like, oh, my kid would never. I get it. But she'll eat, like, eggs and fruit every morning. And she'll and if it's a fruit that's a higher glycemic, like an apple or banana, she will I'll be like peanut butter. She's like, yeah.
So, like, it helps, and she'll eat the eggs first, which, again, promoting one of your your podcast episodes, Glucose Goddess, about order of food eating. Like, she will listen to me and follow that. She'll drink water when waking up most of the time, which is also another one of her tips. So she does what she needs to do because she doesn't really know any other way either because I've been kind of prompting it since she's you know, before she could even talk or walk. I've been like, water first, eggs first, then fruit.
Like, that's just kind of the way she's always eaten. Lunch, I pack it at home. She picks what she wants, but we pack it. She actually really likes using the scale and and writing down the carbs on the post it note herself, and then she brings the post it note with her to the nurse. I think that
it gives her a feeling of being, like, not in control, but, like, you know, gives her agency in the whole thing, like, choosing the order she eats and weighing the foods. Or do you think it really is just that she's so I don't I don't wanna use the word like, but but but it's so ingrained in her that she doesn't have a choice? Or do you think it's like a you know, I'm I'm not sure if I'm being
Yeah. I think it's just kind of her normal routine, but she seems to be at an age where she wants a little more independence. She might pull back. I know there's, like, a lot of kids that don't like managing their diabetes, and I get it. I would be happy to do this for her as long as possible so that she doesn't have that burden.
Independence & the School Rulebook 1:07:21
But for right now, she seemed she she wants to even give herself insulin at school. Mhmm. That's kind of another slightly longer story about independence versus not independence and a roadblock we ran into this year.
With what the school would let you do?
Yeah. So I don't know how long ago if the forms were exactly the same because Arden's, like, twenty one ish. Right? Yeah. So I guess the doctor like, the doctor's forms or orders that that we put in with the school, it's either it's kinda black and white.
It's either independent or dependent. And I had asked and spoken with her endocrine, and I said, hey. Could she be like, when they list what you need to be to be independent, it's like carb count yourself and all these different things. I said, she can do all these except the carb counting. Like, I wouldn't ever want her looking at a class party snack brought in and carb counting it herself.
I don't feel comfortable with that. I was like, but can she give herself insulin? Like, if I'm writing it on a post it note every day and it's saying her, you know, her lunch is 40 carbs, can she input that into the pump herself and and give herself insulin?
Yeah.
Last year, she had a one to one para. And I said you know, and her para, oversee it. Just see it. Like, visually have an adult have eyes on it because the para was not allowed to give insulin. In New Jersey, only a nurse a school nurse can give insulin, so her teacher can't.
And she only can if she's deemed independent. So the para is like, can she just have eyes before she hits the start button and confirm, like, yes, 40 matches the post it note. That's good. We don't have to go down to the nurse. She really wanted to be able to do that.
The doctor felt comfortable writing off on that, and I was like, can we handwrite this in? And the school was like, no. And we kind of they we went back and forth, and they printed me out some stuff from their bylaws or whatever their lawyer is. And they were like, no.
Bylaws. Dummies with their dumb rules.
Yeah. Yeah. I mean, I'm her parent, and her doctor is willing to write this. So I just I'm funny that some superintendent or whoever it was was like, no. Our lawyer says, no.
That's never met my kid. But like I said, that's a longer
It sounds like a lawyer saw that and said no to it.
Yeah. Exactly. But that's never met us. So, yeah, she would like to do it herself. She really wants to be in the classroom doing a lot of this herself, and that is how we do it when she's at other things.
She goes to religion. And last year when they were practicing for communion and doing, you know, checks as the host, like, she gave herself insulin for for her checks. And, you know, she'll just text me or I'll text her, and we do that if she's, you know, at a friend's house or
whatever. Fine everywhere. Right?
It works fine everywhere, but the school won't allow it.
The school won't let you do it. Is there a world where you can just do it? Or or, like I mean, I guess they would know if she didn't come down and, like, do all
this stuff. Yeah. Did try did
you try the argument about her missing all the class time?
I did. I did. That's when we kinda changed things up. That was, like, part of that art story where she was missing art and being sad and I didn't care. Changed things up.
They cared more about what the lawyer said or more about her learning is what I was wondering.
They care more about what the lawyer said.
Yeah. I think so too. My gosh. Well, Aileen, I really appreciate you doing this with me. You really saved me today.
Thank you. First of
was No problem.
Was all amped up to record, and then this person, like, dropped out the last minute. Was like, oh, come on. And and then and then I thought, oh, I'll just I sometimes have a I don't really know how to explain this. I guess somebody would call it, like, impostor syndrome or something like that. Like, I made a post to put up to say, like, hey.
You know, could somebody jump on and record with me? And I really do mean it that way. Like, I I I I honestly, that's how it occurs to me. Like, oh, I hope somebody would be willing to do it. And now I'm looking I just looked up because, you know, I mean, the post is a 127 comments.
And I'm still just wants to talk with you.
Sharing the Show & Keeping It Going 1:11:30
Well, but I'm on but you have no idea what it's like to be in my head. In my head, I'm like, this whole thing's almost over. Like, I my wife is so sick of me saying that. I was like she's like, what are talking about? I'm like, I mean, how long can a podcast about diabetes last?
And she goes, well, it's been twelve years so far. And and she's like, it feels like it'll last as long as you want it to last. And I was like, well, I want it to last a a much longer time. She goes, well, then stop talking about it. I'm like, but it's hard not to feel that.
Like like, I'm stunned that anybody answered me. I know that might sound ridiculous, like, to you, but, like, to me, it it doesn't. Like, I I looked at it, I was like, nobody's gonna answer this. And, you know, it's just really lovely. So now I'm basically setting up the rest of the the year with with the recordings when I get off with you.
I don't think I would have had the the like, to be brave enough to just set up on my own and be like, oh, I'm I'm I have enough to say and, like, let me just email him. I'm not.
You needed the Thelma and Lee's
Lee's were were off the
cliff thing.
Impulse. I was like, okay.
Well, that's that's actually what I was hoping is to grab somebody who because you were terrific, by the way.
Oh, thank you.
Yeah. Yeah. You're absolutely fantastic. And and I'm I'm glad that you did that. I yeah.
I don't know what it is exactly. I just did something I don't think I'm supposed to say, but I just did something with Omnipod. Like, I filmed something with them. And Mentioned
it, but continue.
And and I I I can't be detailed about it. And and, I mean, you'll see it eventually. And and when it got done, I walked away and I thought, oh, I I why? Fuck that up. Like, like, it's exactly how I felt when I turned and walked away.
Was like, that's gonna be an abject disaster. They'll probably cut this from the thing. Like, I they're like, oh my god. They're being so garagatory when I'm walking up. Look at them trying to be polite to me.
They probably think, oh, does he have a head injury? You you know, as as I was walking away. And I really felt that way. Like, I was like, I definitely did not do a good job. And I'll I'm gonna and then I I stopped myself.
I was like, oh my god. This is what everyone does when they come on the podcast. Do you have any idea how many people I stop recording with? And they go, listen. If you don't wanna use that, it's fine.
I'm like then I'm like, no. No. No. I'm like, no. What are you talking about?
And they're like, I mean, that that was terrible. And I'm like, I wonder what's wrong with me is what I thought because I because I got a message from my I don't wanna use people's names, but I got a message from my person, she she's like, oh my god. Your part went so great. Like, like, here's some, like you know, like, we're so excited. And I'm like, oh, okay.
Because I spent the last week thinking, like, oh, I I actually texted her and I said, listen. When you let me down, use kind language. And she was she was like, what are you talking about? I'm like, why? I obviously messed that thing up.
And she goes, we we didn't think that. And I was like, oh, well, in the moment, it was exciting. I was like, but when you stop and look at it, you're gonna realize what and she
You're very charismatic. I'm sure you probably, like, black out and just, like, go about your normal personality, and it's, like, great.
Well well, thank you. And that's kind. But, like so I was at the I was at the dentist office yesterday chatting it up with the the ladies at the front as I do. We a have nice relationship because I'm a person with a number of different crowns, so it's not like I don't know the people at the dentist office. And we were they asked about the trip, and I was explaining that.
I really felt like I messed the whole thing up, you know, etcetera. And and she's like, no. I saw a thing you did online recently, and she was referencing the the three tips for the Omnipod five, like, make the Omnipod five, like, adjustable. And and she's like, that video you did, it popped up on my feed. She's like she's like, you were great in that.
She's like, it's it's very natural. And I'm like and I said, no. No. No. And she pulls it up to stick it in my face.
And as soon as she showed it to me, I went, look at my neck. That's what I said. She's like, what is wrong with you? I'm like, I don't know. My neck looks ridiculous on this.
And she's like, no. Stop it. So
Well, I'm glad you told me I could turn the video off.
Oh my god. Oh, no. Yeah. You would have killed me. If we turned the video on for this, I would have just been, like, the whole time I would have been thinking, I look ridiculous.
But I don't know. I I really, like I sat and thought about it for a while and because we were talking I've really known these women for a really long time. We're friendly. And and she goes, what do you think's wrong? And I said, my best guess is, like, I was fat when I growing up, and I really think I have a hard time seeing myself correctly.
Like, I really do think that's what it's about. Because when they sent me the photo from the thing that I did, I looked at it and I thought, oh, I I I don't look right. And then I I I showed it to my wife, and I was like, hey. Do I look bad in this? And she goes, how so?
Like, she wasn't even tracking what I was asking her. And so I stopped because I don't wanna seem needy because we've been married for thirty years, and I assume she's looking for any reason to get rid of me. And so, like so she was just I I said, okay. I'm like, I don't look like it's but she's like, no. You look fine.
And I went, oh, okay. Great. And and but I don't know. Like, it's just it's whatever it is, it stuck to me. And I'm 54.
I don't think I'm shaking it at this point, but we'll see. Anyway, I didn't think anybody was gonna say yes when I put it on Facebook. I actually have a plan for, like, if I should delete it so I'm not embarrassed after I put it up.
No. I think you have, like, so many episodes. That's also what, like, makes me come back. Like, it depends on my mood. Like, do I feel like I need to, like, change a setting or or retouch up with something?
Usually, I feel pretty confident in that stuff. However, as technology changes, when obviously, when we got the Omnipod five, of course, I was listening to those episodes. Whenever you have, like, that's come on that talks about, you know, their their upcoming stuff or I always listen to that stuff for sure. And then, like, it's just like, oh, do I wanna just listen to someone talking? Do I wanna, like, listen to I always, again, listen to Jenny too because I feel like those are the types of things that I need, like, the information on.
Yeah. But, like, even my son, he's always like, why are we always listening to this?
Oh, tell that kid I said go to hell. I mean, what are we doing right now? I did you tell my bills and kids that have to go to well, one went to college, but I still paying for the other one. I can't tell them to shut up. Alright?
And and subscribe and follow. I you know, it's funny. I've been listening to I've been list they call it a podcast, but it's on YouTube. So I don't know if I'm just old. But if you're videoing yourself, I don't think that's a podcast.
I think that's a YouTube video. I know this is just some antics.
I agree. But
yeah. But so I've been watching these these these interviews this this guy is doing, and he's starting to grow on me a little bit. And I've seen, you know, ten, twenty of them. And in the beginning of everything, he does, an impassioned, like, hey. Listen.
Please subscribe to this. You have no idea how much. And when he does, I go, ugh. Sounds so thirsty. And I know that's a word I shouldn't be using at my age, but he literally sounds he sounds it sounds pathetic to me.
And but I know exactly how he feels because it is the lifeblood of, like, making content and putting it up. Like, if you guys don't subscribe, I'm dead. You you you know what I mean? Like, it'll this will you wait. Do you see how fast this goes away if people don't subscribe, follow, download, listen, like, do those things, share, etcetera?
It it dies really quickly. But when I heard someone else do it, I was like, dirty. And then when I do it, I'm like, no. You don't understand. It's fucking important.
Yeah. I post a lot about, like, for awareness and stuff. I I just tend to be a person that enjoys sharing stuff. But so as a result, though, I get a lot of people sent my way asking, like, hey. I know someone that has type one.
Can I send them your information? I feel like anybody that's been diagnosed within the last nine years, like, within the vicinity of me. Even Ainsley's doctor is like, can I can I send someone your number? Oh, wow. My daughter my oldest daughter, her kindergarten teacher, she pulled me aside one day and goes, so I know someone that was diagnosed.
Can I give them your information? And I just I always I always I love that also in the albums and your Facebook group. It's so easy to find the episode guides. I'm always like, here. Start here.
Yeah. Thank
you. Start there and then if you have questions.
Isabelle fixed Facebook group so that it's easier, and I've just done some stuff with the website. Actually, I put up a a page. It's at juiceboxpodcast.com, and then it's slash clinician-share. And it's literally a website that's just to make it easier for doctors to share printouts and handouts and and links.
Oh, that's that's great.
Yeah. So I'm I'm I made it, and it's funny because after I made it, I thought I maybe I should have just called it share instead of clinician share because as I look at it, I realized that there are more people like you that are sharing the podcast than I'm aware of, and I would like to make it easier for you guys as well. I don't know. I have a very short amount of time to make a decision, but I think I'm gonna keep this one this way. But I think I'm gonna use the format of the page and try to figure out something to put right on the front page of juiceboxpodcast.com so that people can share right from that.
Yeah. Everyone's different learners. I know for me, the Facebook groups were so overwhelming in the beginning Mhmm. Because of the amount of questions and then the amount that you're like, wait. Do I need to know about this?
Why what is this? And just like and then you post a question and then sometimes you have the people that are like, use the sarch fountain.
Well, those people can shut up. They don't realize how they don't realize how important it is for there to be constant conversation.
Again Well, because you can't filter through thousands of things and find it.
Well, not just that, but if you don't if if if a Facebook group is not active, then it dies. Then there's no reason to go to it. Then it doesn't matter what kind of good information's in it because nobody will ever be in it again. The pressure to keep people connected to things when you make stuff like this is probably the worst part of my life. Like, it real it it really is.
It's in it it must be what a a small business owner feels like when they open up an ice cream shop and then everybody in town's tried the ice cream. And they're like, okay. Bye. You have to come back now. Like, you know
what And they all have an opinion too.
Yeah. It it's just it's very it's a it's a difficult thing to keep. Like like, I swear to you, it's not a thing that, I guess, would be easily understood by somebody who's not in my position, but my greatest accomplishment is keeping the podcast going. That it is that is not easy to do. So
I mean, moderating that group has got to be the most difficult one.
That I don't have too much trouble with that anyway. I I've I've let go
I usually just scroll past, but I, like, I laugh at something. I'm like, oh, that's about to be shut down. And I'm not gonna comment that's about to be shut down because I don't wanna be in the drama. Right. But I just see it and I'm like, oh, that's funny.
Yeah. No. And then and then people, like, you know, fascinatingly will, like, judge you for it somewhere or something like, oh, he'll he so I heard saw somebody say recently, like, he bans everybody. And I was like, we've barely banned anybody. Like, there's 84,000 members, I think, as of today.
And the amount the amount of people that have been banned out of that group in years and years and years is a it's a very small number. Like, you know,
I'm like banned accidentally.
Did you you got banned accidentally? How did that
Yes. Yusabel helped get me back in.
Did I really? Oh, I'm glad I did. That's nice.
I I messaged, Yusabel and I was like, I don't think I did anything. And if I did, can you please tell me what rule I broke? I don't understand.
Well well, I the I'm glad you were nice about it because we're just doing our best. And you're trying to like, sometimes people are pushing businesses, and it's just the thing we don't let happen. Like, even if I just today, somebody said, hey. Does can anybody tell me about any good virtual, you know, support systems? Like, they're just asking for, like like, the place Jenny works or something like that.
And this person jumps in and goes, I am blah blah blah, and I have this, and this is my link. And I'm I had to remove it. I'm like, you can't you can't promote yourself. Like, if somebody else thinks you're a great thing, that's awesome. But you can't do it because then the group turns into a billboard, and then that's another way it dies.
Like, you can't we can't just turn it into the yellow pages. And and then some people understand, and then some people get mad, and then they send angry notes, and you're just like, okay. But to your point, it's not easy to run a Facebook group. But it is really valuable, and I find it actually, I find it uplifting to to see all those people in there. But anyway alright.
I'm gonna let you go. You were very kind to do this. Thank you so very much. I really appreciate it. If you hold on one second, I just have to tell you a couple of things.
Sure.
This episode of the JuiceBox podcast was sponsored by US Med. Usmed.com/juicebox or call (888) 721-1514. Get started today with US Med. Links in the show notes. Links at juiceboxpodcast.com.
Head now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system. Alright, kids. We're done. We're at the end.
Just do me one last favor if you can. If you could, please. If you have the need or the desire for something that one of the sponsors is providing, please use my links or my offer codes. They help the show so much, and that means me. You're helping me to make this podcast every day.
You're helping me to support the private Facebook group. Do all the things that I'm doing. I'm not asking you to buy something you don't want or something you don't need. But if you're gonna get one of these items, use my links or my offer codes. They help me a ton.
Thank you so much for listening and for supporting. I really do genuinely appreciate it. I'll be back very soon with another episode.
- Diabetes can hide behind a “stomach bug.” A vomiting, restless, unsettled baby turned out to be type 1 in DKA — and a packed ER didn’t catch it until someone finally checked her blood sugar. When something feels off, trusting your gut and asking for a glucose check matters.
- Dosing a baby is its own problem. With a 1-unit-per-60-carb ratio and a breastfed child eating almost nothing, the real answers were diluted insulin and learning to dose tiny fractions — not “feed cake to reach the carb count.” Diluted insulin is worth asking your pediatric endo about.
- Thyroid symptoms deserve attention, especially with a family or autoimmune history. Aileen pushed on her older daughter’s TSH despite a reluctant doctor; symptoms plus a TSH creeping up is worth a real conversation. Advocate, and ask for a provider willing to look closer — decisions belong with your care team.
- Type 1 and celiac often travel together. Celiac added cross-contamination risk (a Paris crepe), self-consciousness, and even infusion-site complications from a bloated belly. Whole-food cooking and supportive friends made it livable — it mostly costs you spontaneity.
- If a provider’s care doesn’t fit, keep looking. Aileen cycled through residents who didn’t understand nursing, a CDE who suggested cake, and an over-state-lines phone refusal before landing a pediatric endocrinologist she trusts. A good fit changes everything, and you’re allowed to call around.
- US Med — Diabetes supplies delivered — this episode’s sponsor. Or call (888) 721-1514.
- Tandem Mobi — Tandem’s impressively small pump with Control-IQ+ technology — an episode sponsor.
- Touched by Type 1 — Scott’s favorite diabetes nonprofit and an episode sponsor.
- #1787 — Cured Patient 9 Speaks — Katie Beth on the islet-cell transplant trial — the conversation Aileen found genuinely hopeful.
- Clinician Share Page — Scott’s shareable hub of printouts and links for doctors — and for sharers like Aileen.
- Diabetes Pro Tip Series — The settings-and-timing fundamentals with Jenny Smith — episodes 1000–1025.
