#1153 Dia-Dyad

March 15, 2024Scott Benner

Riva has lupus and one of her children has type 1 diabetes. Her husband Adam joins us.

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Scott Benner 0:00
Hello friends, and welcome to episode 1153 of the Juicebox Podcast.

I'm speaking today with a married couple Raya and Adam, they have three children. One of them has type one diabetes rival also has lupus, and possibly a thyroid issue. Her mother had hypothyroidism, their child was diagnosed very early, so we're going to be talking about everything from breastfeeding to what they're doing now. Please remember while you're listening 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. If you'd like to help with type one diabetes research and you're a US resident, please listen up. The T one D exchange is looking for you. That's caregivers of type ones, as well as type ones themselves. All they want you to do is take a short 10 minute survey. And that's it you'll be helping with type one diabetes research, T one D exchange.org/juice. Box head over there. Now you'll be done before you know it. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout that's juice box at checkout to save 40% at cozy earth.com.

This episode of The Juicebox Podcast is sponsored by ever since the ever since CGM is more convenient requiring only one sensor every six months. It offers more flexibility with its easy on Easy Off smart transmitter and allows you to take a break when needed ever since cgm.com/juicebox. This episode of The Juicebox Podcast is sponsored by touched by type one touched by type one.org. And find them on Facebook and Instagram touched by type one is an organization dedicated to helping people living with type one diabetes. And they have so many different programs that are doing just that. Check them out at touched by type one.org.

Riva 2:15
My name is Raya. I am a full time mother to three kids under the age of nine. The oldest is neurodivergent. Our middle is starting kindergarten. And our baby is two and he is our type one.

Scott Benner 2:36
So you're tired. It's a lot. Yeah, no kidding. Give me your oldest stage eight, eight. Kindergartens, what five.

Riva 2:47
She's nearly six. Happy birthday. And two.

Scott Benner 2:51
Okay, who else is here with us?

Adam 2:54
And I'm Adam, I'm Ravis husband, I'm the dad to all these three kids, and also lacking in sleep. I have a background in biomedical engineering. So I've really gone deep on a lot of details on the biology and the math. So that's kind of my role in this.

Scott Benner 3:19
How are we going to refer to your kids just we're keeping their names out of it, or

Riva 3:23
I'm really torn.

Scott Benner 3:27
Well, for now, why don't we just say, type one, kindergarten and neurodivergent how's that sound? Sure. All right. Well, and if you get more comfortable, we can do whatever you want. So private fair to say this is all Adams fault, right? Like you weren't after him. He came towards you does blame it on me.

Riva 3:48
Thank you. Thank you.

Scott Benner 3:49
Every time I look at my wife, and she's uncomfortable, I think Oh, I did that to her.

Riva 3:55
Thank you know how things work.

Scott Benner 3:57
I saw her she looked attractive. I started talking to her and now look what happened. Oh my gosh. All right. The either of you have any autoimmune issues. And you know what I've decided when I asked questions in there for both of you, let's just go to reiver first, so you don't have to wonder who's going to talk? Perfect.

Riva 4:17
I have, I think a non diagnosis. I have had a couple of doctors float. The idea of something called incomplete lupus.

Scott Benner 4:35
What do they say that is?

Riva 4:36
It's lupus that can't be diagnosed with a blood test. But the symptoms match.

Scott Benner 4:45
What are your symptoms? I haven't

Riva 4:47
had a flare and a little while. So hair loss, frequent UTIs frequent upper right respiratory, very tired, anemic, itchy, like rashes. And it seemed to coincide with postpartum twice.

Scott Benner 5:12
Okay. How long did you have postpartum for?

Riva 5:15
And I'm actually saying postpartum not visa vie depression

Scott Benner 5:23
just the time after birth. Correct. Okay. Okay, so then it lasted for forever when did this come up in your life? How long have you been dealing with this?

Riva 5:37
Um, I guess I started first feeling like something was amiss about a year after our first was born

Scott Benner 5:50
about seven years ago and you don't have any other autoimmune stuff, celiac thyroid?

Riva 5:58
Again, thyroid has never been able to be confirmed. That blood that's been floated to me. Yeah,

Scott Benner 6:08
right. But let me let me jump in here for a second. So a lot of your symptoms are thyroid, like not that things don't overlap ever. But what do you mean, it's not comfortable? What's your TSH been when they've tested it?

Riva 6:19
It's been normal every time every year of my life.

Scott Benner 6:23
What's the number? I don't know the number offhand. So figure out the number because TSH is an is an interesting one. The range I think is, I don't know, four to 10. They'll call normal. But any good doctor will medicate TSH over two with thyroid symptoms. So you could have a TSH of five which would be crippling your hair would fall out. You'd be tired, you wouldn't be able to get rested. You might have skin irritations, all this stuff, and literally like Synthroid and like two weeks from now you'll feel better. And the reason I bring it up, not just because I've heard it from so many people, but because this exact thing happened to my wife. She had Arden her thyroid went bonkers. We took her to an endocrinologist. They heard all of her symptoms, tested her blood, came back and said, Well, it's not your thyroid. That lab is normal. But that was exactly the problem. So, Adam, you're good with bio or if you're good with computers, pull up somebody's blood tests while we're talking and we'll take a look. But if not, Robin No kidding. Get off the phone. Call the doctor. Find out what your last TSH was if it's over like two 2.1 Tell them you want to be medicated for your thyroid. I bet you feel better in a week. My

Riva 7:45
mom has thyroid. You're gonna start screaming at me.

Scott Benner 7:48
I mean, not screaming because we're you know, we're not married, so I'm not angry at you. It's so ruining my life. But do you think non married people are listening going? What are they talking about? Just fine people. Yeah. Okay. Where do you try right? So, what does your mom have?

Riva 8:09
Like? I don't know if she has hypo or hyper. I don't. She's on Synthroid. She's

Scott Benner 8:14
Oh, she's so she's got hypothyroidism. Did they ever call it Hashimotos this episode of The Juicebox Podcast is sponsored by the ever since CGM. Ever since cgm.com/juicebox. The ever since CGM is the only long term CGM with six months of real time glucose readings giving you more convenience, confidence and flexibility. And you didn't hear me wrong. I didn't say 14 days. I said six months. So if you're tired of changing your CGM sensor every week, you're tired of it falling off or the adhesive not lasting as long as it showed or the sensor failing before the time is up. If you're tired of all that, you really owe it to yourself to try the ever since CGM. Ever since cgm.com/juicebox, I'm here to tell you that if the hassle of changing your sensors multiple times a month is just more than you want to deal with. If you're tired of things falling off and not sticking or sticking too much or having to carry around a whole bunch of extra supplies in case something does fall off. Then taking a few minutes to check out ever since cgm.com/juice box might be the right thing for you. When you use my link. You're supporting the production of the podcast and helping to keep it free and plentiful. Ever since cgm.com/juice. Box

Riva 9:45
No. And there was a great just like a breastfeeding gynecologist at Chapel Hill. Oh, okay. said Oh it says Hashimotos

Scott Benner 9:59
well It makes. I

Riva 10:01
was really excited about that. But it came back and she said, you're fine.

Scott Benner 10:07
Yeah. So breastfeeding gynecologist is going to be the name of my first sitcom that I write. I just decided everyone would tune in at least once. They'd be like, what's this about? Yeah, it was the way you said it a crack me up. But, but yeah, just get the number, or have it or have it retested or whatever I'm, Listen, I'm not a doctor, I'm an idiot. But I've talked to enough people. And I've seen it enough in my own family. Like, for instance, when my son got Hashimotos, he got his only symptom. Besides looking back, he was probably a little like, course, like his his, his temper was kind of like off like his personality. And but his hair was falling out, no one noticed because he had long hair. And he didn't notice because he thought that was just the thing that happened. He had low iron, at one point that we had to pump back up, which by the way, has never happened to him again. And rash was his big one. So if his body heated up, he would say that his skin felt itchy. Like, you know, the first couple days of summer, when you go outside, and your body's not used to the heat in the sun, and you get that flush feeling for a second. Like that would come over him. And then he'd break out in hives, waist to neck, and they would itch incredibly. And the only way he could make it stop was to like, go out like it was November when it happened. Luckily, he'd have to walk outside without his shirt on until his body, his core temperature came down, and then it would just go away. So I don't know. I don't want to get stuck on this. But let's just say if this is it, I'd like a Christmas card. That's all. But I'm not giving. I'm not giving you my address it just emailed to me. What else? Anything else? Oh, we got your mom with thyroid. Anybody else in the family? I

Riva 12:07
mean, Adam will chime in that his mom had ever thyroid removed. But there's nothing else. Like you know, we got the insert, type one in your family. There's one person. I think again, Adam can chime in, but his grandfather had what everyone believes is type two. We have been told by you know, few people floated the ideas, a great person at trial net actually. She said, You know, we didn't know. Back then. If maybe someone had type one and died before. You know, that was really discovered and may have been called Type Two diabetes

Scott Benner 12:50
still. Yeah, Adam, I like it when she tells me what you're going to say. And then says it. This is my favorite part so far. It's good for

Riva 12:58
him. Yeah, I'm

Adam 13:00
used to it. I just nod.

Scott Benner 13:03
Adams got a great story that I'll tell you now about his grandfather. Nothing bad. Nothing bad is gonna happen to say anything. You've done enough. Okay. Couldn't go after a different girl leave her alone. So the pandemic things were limited. How long have you guys been together?

Riva 13:28
almost 25 years? Oh, wow.

Scott Benner 13:29
You've been married for 25 years? Um, no, we

Riva 13:33
got married about I think 11 There's not an about there's an exact number but we don't need to 13

Adam 13:40
Oh,

Scott Benner 13:42
my God. Remember when I said my favorite thing was gonna be when rival told your stories. Now it's when she doesn't know how long you've been married. Or have you cloudy? You have like brain fog. Definitely, all the time.

Riva 13:54
I'm so tired. Like, Sawyer didn't era just set his name, but he didn't sleep like a normal baby. You know, he's getting diabetes. And now he has diabetes. So you know, I haven't been rested. For I don't know, three or four years. Three. On

Scott Benner 14:15
Saturday when you make Adam get up really early and let you sleep. And you sleep. And you sleep like 12 hours straight because you do right?

Riva 14:22
That's an eight on my on my mornings off. You

Scott Benner 14:26
wake up and feel rested? I feel better than I normally do. Okay? But rested like that. You even remember that feeling? Even

Riva 14:36
if I was physically rested? You know, there's a new mental load that has changed how I feel. Adam, do

Scott Benner 14:46
you notice it? Like I used to? I'll read you a little bit and you can tell me if you're on board. I stopped recognizing my wife's personality when she had a problem with her thyroid that nobody was dealing with. Not that Your spotlight couldn't just be lupus, but I she was just different. And no matter how many times I tried to explain it to her, she, she didn't know what I was talking about, like she just thought, you know, this is how I am. But she wasn't like, I remember her starting to take Synthroid and thinking like, wow, watch her personality came back and, and her temperament, all different kinds of things. But I was wondering if you've noticed anything like

Adam 15:23
that? I mean, it's it's been hard to disambiguate what's been the newly diagnosed type one diabetes load, and any kind of effect a thyroid disorder might have. Yeah. So I think we yeah, we both changed a lot since the diagnosis. Have I noticed the change? Yes, but not an unexpected one. And I'm sure I've changed too.

Scott Benner 15:53
So for everybody listening, not just due to, I would warn against the narrative. The Yeah, but this happened. So this is expected because this happened, like, at some point, you should try to start expecting better than that. And because I don't know if that makes sense or not, I don't know if I'm being does

Adam 16:16
we get started to experience it.

Scott Benner 16:20
Also, by the way, congratulations on being the first person to say disambiguate on the podcast ever. Wait, it was amazing. Alright, so we got your backgrounds, telling me a little bit about your son's diagnosis. What did you notice first?

Riva 16:39
I just explained this to diabetes startup yesterday, so it's fresh. So your was it seems like a very typical newborn. And we brag to everyone that he was our easiest, baby. But he was a newborn. So you go into that nadir. When we came out of the three to six month kind of newborn period. We expected things to naturally sort of start to get better, easier. And they didn't. They started to get worse. Sawyer stopped sleeping. He did not transition to solid food over time, from probably six months to a year started to cry. All the time. Change temperament, went from happy to needy sleep continued to deteriorate. We started to take them to pediatrician more for your checks. No, they would check to see oh, is he teething? All the usual things they may check for? Yeah. He's fine. He's fine. He's fine. Around 12 months, his weight started to drop. And the pediatrician said, Ah, you're still breastfeeding. You know, you got to get some nutrient dense foods into him. Maybe breastfeed a little less. Had I breastfed him less. He wouldn't have been getting any nutrients.

Scott Benner 18:19
Because he wasn't gonna eat anything else.

Riva 18:23
He would try to eat sometimes not much interest in food. And we love food. We're like, our kids love food. And we were not novice parents. Yeah, right. And Adam kept saying, I don't think he eats food. When he would eat vomiting. We found out he had food allergies, milk, soy, egg, sesame, and they continue to mount foods that he would try. He would vomit or get hives.

Scott Benner 19:05
Do you have any food allergies or either? I do have shellfish. Is it hard for you to talk about him? Like he's a problem? Does it make you like while you were describing it? It seemed difficult for you. I was wondering why

Riva 19:22
because I'm we're both still so let down by the people who were supposed to be helping us keep a baby safe. We still feel really frustrated by the lack of big checks at these equipments. Urgent Care saw him when when he went to the ER for breathing problems. So many people had eyes on him. Nobody poked his finger

Scott Benner 19:57
and that went on for like six months.

Riva 20:00
Yeah, yeah. Probably about from age, one ish. Or maybe just before one. It's around Christmas time. And he was diagnosed the following summer. So six to eight months,

Scott Benner 20:15
when he was diagnosed, what was his blood sugar? And what did they say they thought is a once he was 472.

Riva 20:21
And Adam might remember, in the high eights,

Adam 20:28
it was eat something I can't recall exactly

Scott Benner 20:32
how close to comedy think he was. I think Lowe's,

Adam 20:37
he, I had picked him up a few times in the night. And he when he was crying, or whimpering and he was live. And this was a symptom we described to a doctor and I, we thought it was TV. I think at the time, it was probably low blood sugar. Yeah. And we thought maybe, okay, he's teeth pain. And so we would give them you know, ibuprofen, which is kind of like, full of sugar, the kids version anyway. So I don't know if that got us out of any kind of, you know, traumatic medical emergency medical experiences. But that was part of the symptoms we described. And I think probably very close. Yeah.

Scott Benner 21:29
But it See, isn't that interesting? It's another example of, like, lolling yourself into acceptance. Like, I mean, honestly, if, if it hadn't happened so slowly, right? Because that's what gets you if it hadn't happened. So slowly, if you would have randomly walked into his bedroom one night picked him up, and he was limp, you would have just gone right to the ER. Right? Yeah. But because it happens. So slowly, we start to accept it. It's the wrong word. But you know, it becomes normal. And then it's the same brain function that lets us gain weight slowly. You know, I mean, it's the same thing or make bad decisions slowly. We just, we get a little used to we cross that line, and then we wait. And then we cross it again, you just keep doing that, before you know it, you can't see that we're the first line was anymore. And you feel like you're in a place you belong. And and then that frustration? Have you talked to anybody about that? Right? But like, it's been a while, it's been a little while now. Like, I don't want you to feel mad forever about this. Because this, this happens a lot. I know it sucks. But you're actually one of the lucky ones. Because you figured it out.

Riva 22:40
I mean, I will say I'm one of the more hyper vigilant humans you might ever meet. And I don't get lulled very much. But it took us we were trying to put pieces together. You know, and I also am very intuitive, and are my gut and even Adam Scott doesn't have any intuition. We kept saying to each other, you know, in passing, something's off. And things not adding up. And we're intelligent people were educated, we have great social networks. So it's not to say that we were not trying to put a puzzle together.

Scott Benner 23:29
No, no, I don't, I don't think you weren't. I just mean that. It's the you stop seeing things. I don't know, it feels like you can stop seeing things for what they are because they so slowly creep up on you. It's the um, what is the frog in the pot thing, right, you can throw a frog in a pot of boiling water, no, jump right out. But if you put it in a pot of cold water and warm it up slowly, it'll sit there and happily die like that, that. I'm just always not that that was happening to you, but it happens to people. And so I just I bring it up in these conversations. So that, you know, people might stop for a second step back except, you know, look at their lives and go, Oh, we are nowhere near where where I thought we were. But the thing you're talking about? Listen, I have that to constantly thinking about things. What is that what's happening? It's not a fun way to live. But when you have auto immune stuff in your life that's kind of unnecessary. And even that like, intersecting each other in the house or during the day and going Did you notice that this happened? What did you think of that? And then having like a four minute conversation, then continuing to move on? I've, I've lived through that moment, a few 1000 times. So I definitely know what you're talking about. I just mean, You sound angry that nobody gave him a finger stick. And I understand why and it's reasonable, but at some point, I mean, but I took garden to the doctor for weeks about things and they were like, Oh, it's this it's that it's the Hand Foot and Mouth is came back. That never happens. Like the doctor who's a friend of mine actually said, that never happens. That's weird. And then we just kept moving. I called him again, I was like, hey, you know, Arden just had a bowel movement. And I was able to with my fingers, crush it into dust. Oh, she's just dehydrated. Try this. But I mean, think of that explanation, like there were like pebbles, that if I squeezed both sides of the diaper just exploded into dust. Does that sound like just dehydration to you? Right. And so these things happen on and on and on. But in the end, no one's looking for this. And I've seen a number of years ago now. One organization was it beyond type one, one organization got it in their head that they were going to contact every pediatricians office in the country and give them literature about this. And they tried, and they got volunteers and it fell apart eventually, you would think it's such a simple thing. But it's credibly difficult to do, you know, to make the do that advocacy. So this is a great way to bring out that story. And hopefully people will share it and not go through what you went through. Because your son, you know, really could have had a very poor end, if somebody didn't figure it out. But they did. So now you're breastfeeding, a kid a baby with diabetes a year and a half old with diabetes. Is that right?

Riva 26:28
Yeah, he's two now. And I weaned him. I think in May.

Scott Benner 26:35
Okay, about four months. Yeah, yeah. So how long did you do breastfeeding with type one, four.

Riva 26:40
So he was diagnosed a couple days shy of 15 months. And he was March April. Like 26 months? I think when I read him.

Scott Benner 26:51
I was that was it hard to Bolus for? Was he? Amy, do

Riva 26:57
you need to chime in? Yeah, this this was pre agreed to?

Scott Benner 27:03
Adam, you're allowed to speak about this. And even though you have no intuition, I think you will be a reasonable person to talk on this subject.

Adam 27:11
Well, I appreciate the vote of confidence by both of you.

Riva 27:16
So

Adam 27:18
before diagnosis, or was feeding on demand. And that was the first thing we had to get our heads around to not do that anymore. So that was a tough transition, especially because, as Rob mentioned, he wasn't eating food yet. But once he started having insulin, he started eating everything. So that was a easier transition than we thought it might be. We talked a lot about transitioning him off of breastfeeding very quickly. But we decided that it would probably be really hard for him and Arriva to do that right away, especially after he's gone through this really traumatic week long hospital visit. So that was kind of the decision point to keep doing it. We revisited and since made around a lot. But Pre-Bolus thing became very key to maintaining any kind of breastfeeding regime. And so we were really glad we found the juicebox community and then that helped us with a lot of it.

Scott Benner 28:48
So the breastfeeding without a Pre-Bolus was shooting blood sugar to where

Adam 28:55
400 How quickly pretty quickly. The ask as I described arrive as we were trying to take an unknown are containing liquid or no quantity of it. And then unknown amount of carbs in the quantity. That's what we started with.

Scott Benner 29:21
We don't know what's in here. And exactly and did you always feel comfortable that he latched and and drank?

Adam 29:29
Oh yeah, he was he was a good you know, breastfeed her by that good little nursling he will always latched and Robin he were quite a you know dyad so the

Scott Benner 29:45
way we got around it. I gotta tell you, you're gonna use dyad on this podcast, you're gonna have to define it or you're gonna have trouble people are gonna be like a team.

Adam 29:57
A team just means two people on the team.

Riva 29:59
Do I just you know,

Scott Benner 30:03
I got people out there listening out go on there a dyad What the Hold on a second, they're Googling like crazy. So, so that So okay, so you, you know he's going to eat well. What's is it still difficult to make that decision the first time like we're gonna give insulin before food?

Adam 30:23
Well, we started looking at what the hospital was telling us to do. And it just wasn't adding up. For me logic wise. It's like, wait a second, you want us to wait until after he eats till his blood sugar's rocketing up, and then give insulin just didn't make any sense to me. So we started, you know, when we were like laying claim to inventing Pre-Bolus or anything, but we started getting the idea that, well, this isn't really a great idea. Bolus after eating. And then as we became more familiar with the juicebox community was like, Oh, this is kind of what, what, what makes more sense. It's like, give him some insulin before and if he happens, do more after isn't always taught them up, right? What

Scott Benner 31:22
allows you to hear what the doctor told you see what's actually happening and make the leap because I find that's where people get stuck. They see it may make sense to them. But they can't go against what they've been told.

Adam 31:40
Yes, on my end, it's delving deep into the biology of being really, really often and in that. And I guess at some point, you just got to believe that you know what you're doing. And that, while an endocrinologist knows how to manage all this, they're not in the weeds, like you're in the weeds. And you have to make decisions on the ground that they're never faced with.

Scott Benner 32:13
And private. How and how in the world. Did you allow this dollar to make this decision? Like, what did you What did you what? But But were you guys on board? Did you have a conversation about it?

Riva 32:26
I discovered juicebox when Sawyer was sleeping on me, in the NICU, the first night. I read a thread where like someone was asking for advice for their newly diagnosed baby or toddler. And everyone rushed in and said, Don't leave the hospital without a CGM. And listen to juice box. That's great. So when the I started seeing people the next morning coming into his room, and I said, I want a Dexcom today,

Scott Benner 33:01
how'd that go?

Riva 33:05
I think they thought it was really interesting that the sleep deprived person in a traumatic situation with a little baby was demanding to still breastfeed and to have a CGM. I was really empowered by reading juicebox all night. I'm glad. That's

Scott Benner 33:28
really I don't know, makes me feel. I don't I don't know how to explain it to you. We don't have a therapist here to explain to you how I feel. But thank you. You made me feel nice. I'm happy you found it. How did you find it?

Riva 33:39
I just Googled, really. And somehow, I'm not even on Facebook. But I got an account that night. Somebody said do this. Read this person? Yeah. And I know probably, I could guess I have theory of mind about how maybe that makes you feel. But it's the truth. You changed our lives. I'm

Scott Benner 34:03
glad. I'm glad I'm glad it's going better. And that you honestly that you started so soon. That's the part that makes me the happiest, because I've just heard. And I've just heard too many stories about people who get on the wrong path and takes you know, you get lulled into believing that's the right path. And then it takes years and and sometimes medical issues for people to wonder out loud. You know, maybe I should be looking at something else.

Adam 34:29
That's terrific. Good for you.

Scott Benner 34:31
You actually got them to bring you a CGM in the hospital. Now they

Riva 34:35
brought me a sample. That's cool. That's very cool. And no one knew how to place it. So they pulled somebody whose husband had when she came in. I was in the shower in the hospital room. And Adam, you know, stuck it on his arm and click and we didn't have the right phone for it. Adam found an old one image Word house, I will say from diagnosis onward like it was on for Adam and I, we just jumped into, like, let's do this. Right. Let's try to continue to make an awesome life for our family. It's not to say didn't push us down. We could pretty ground down by course.

Scott Benner 35:25
Yeah, that's pretty much to be expected. You know. And on top of that, we're not even talking about it. But me just said at the beginning, your oldest is neurodivergent. But what is that? What does that mean?

Riva 35:36
I was trying to think about how much of his story I would want to tell. Just to say multiple overlapping diagnoses. Intellect north of 99th percentile. percentile. Super awesome. High needs kid.

Scott Benner 35:54
Okay. They come with medical issues. Newly

Riva 35:58
Yes, yeah.

Scott Benner 36:02
Yeah. Okay. Well, so you were pretty tired to begin with? What makes you? What? What made you keep having children? I don't I'm not judging you. I'm just it's a I think it's kind of a reasonable question. What like, when you when you hit a struggle in the beginning, I mean, it slowed us down. I think we thought we were gonna have three kids. So

Riva 36:24
we love having a family. We wanted to build a family. And I wanted four kids. So we're stopping. It did slow us down.

Scott Benner 36:33
Do you want to just try one more time?

Riva 36:36
We are now we're unable to and we're all too old and poor now.

Scott Benner 36:40
Oh, poor don't even have enough energy to have sex? What are you talking about? Wait, how do we make the I can't do that. Nevermind.

Riva 36:51
What's your name again?

Scott Benner 36:51
Yeah, no kidding. Kelly joke sometimes. And she's like, what if we had another baby right now? It's like, I would probably die. I was. Like, I would just shut off. It's not the desire, like the thought of doing it is like kind of exciting, right? But I don't know where the energy would come from. I really don't. I mean, RT is home from college for a few months. And it's fantastic. But she's going back in like eight days. And there's part of me that's like, Oh, good. I'm having trouble keeping up with just the extra laundry. That might be a comment about her clothes. Being a clothes horse, too. I'm not sure. But but nevertheless. So you come home with a CGM. You find a phone you're running. You're seeing things so you get to be more aggressive with the breastfeeding because you can see it. That's kind of brilliant. Injections at that point. Yeah. Yeah. How long did you do MDI for a pen? Yeah,

Adam 37:51
it was two months. Not long. Well, we, they were really good about getting us the paperwork we needed, because Omnipod had just come out. He's on Omnipod. Five. But it had just come out a few months before that, and it wasn't approved for, you know, at the time, he was 15 months old. So that we had to get special permission to use it. And a few other things, but once that all came through, there was a backlog of training, and you have to do the training before you can use it. So we were kind of chomping at the bit. Even for two months. We were like we know this is gonna get way better. getting in the weeds on the epi pens come in point five. increments are not epi pens, but insulin.

Scott Benner 38:51
Yeah, units. You

Adam 38:53
probably remember Scott but the point five increment is not that accurate.

Scott Benner 39:01
And often way too much when there's smoke. Yeah.

Adam 39:04
And so we were doing the best we could. This is to parents hitting it with everything we could. Best days

Scott Benner 39:14
were 45% or what was the range we're trying for?

Adam 39:19
I mean, we're overachievers we wanted said

Scott Benner 39:25
that all you were shooting for him is 90% of what range? What was your level? What was your high in

Adam 39:30
with MDI? Yeah, I think driver got one day at 90%. And then

Scott Benner 39:41
yeah, you didn't hear me twice. She's gonna give it to you now. Go ahead, driver give it to him.

Riva 39:47
He's wondering what size ranges? Oh, so I think it's 70 to 180 70 to

Scott Benner 39:54
180. How many nights will he have to sleep on the sofa for that? What You've just done now, Adam. Yeah.

Riva 40:01
No, it's fine. Thank you for saying that. It's Okay Adam, you can you can still sleep in, you know, in

Scott Benner 40:10
the room. The room on the floor next to the bed. I don't know prop one sheet and a half a pillow. Now I'm just teasing you guys have actually, I I actually recognize your your banter from my wife and I like so. It's it's sweet. Like I don't I wonder if people hear it the way I do but I hear it is very playful and and, and loving actually. So. Yeah, yeah, you big dummy. Now. I don't believe we've shared with people you both hold a PhD in something. Is that correct? That's correct. Yeah.

Adam 40:44
She got hers first. Of course.

Scott Benner 40:49
No, I It's why I'm doing making fun of you. Because I imagine your IQs are like 150 And

Adam 40:56
that's not very nice to make honest people's intelligence. They're not smart.

Scott Benner 41:01
Oh, yeah, that's a good point. I didn't consider it but I you do make a good

Adam 41:08
we get made fun of a lot of just

Scott Benner 41:13
Yeah, is nothing this is gonna sound fairly elitist for a second, but I haven't. I've never said I have a fairly high IQ. I guess I do a good job of like, being blue collar on TV, because I am. But um, I've mentioned it in the past. Like, I was adopted by like, lovely blue collar people. I grew up very, very broken blue collar. But my, my IQ is pretty impressive. Probably not compared to yours. But I love it when I meet somebody who I think oh, I am dumb to that person. That's interesting. To real moment when you're like, oh, oh, I'm an idiot in this scenario. Like, okay, anyway, keeps me I like it. It keeps you from, you know, getting to fool yourself. Anyway, after we're done recording, we'll all compare IQs rather than when there's Oh, please, it's not much fun. First of all, there's a thing people don't want to hear about. And actually, my wife is the only person I ever met, like, personally, whose IQ is higher than mine. And I was like, Well, this is a good move. I'll get like this girl, because she can keep me in line. So, okay, so you go, do you go to a dash First you go right on the pot five. Right to five. Okay. And the what were the Basal needs at that point? You remember he

Adam 42:43
was prescribed point one? units per hour? One? Okay. When we were NDI was two units of Lantus per day, once a day.

Scott Benner 42:58
And so the pump worked for you was no trouble

Adam 43:00
is doubled our time and range instantly. Wow.

Scott Benner 43:05
Jeez, that's amazing. And you the algorithm works well for him. No, no. So how do you make it work?

Adam 43:15
So let's put a caveat on that. It works really well at night. And we sleep better for it. So huge when right there. During the day, it would pause insulin too frequently. And too long. My theory is because he was getting point one per hour. That's a rounding error to most users of the Omni pod five is my guess. And so he would just give him enough basil. And then he would rock it up when we feed them. So we run intricate Basal programs during the day now. And then flip them over to automate it at night.

Scott Benner 44:06
Good for you. You think when he gets bigger, it'll be easier. Oh, yeah. Yeah. There's part of me that thinks you're going to be able to rattle this off the top of your head but just if you can't specifically just generally like what is the Basal profile you set up for him that works during the day?

Adam 44:22
That's an easy question. It has heard we talk about it all the time and when the adjustments we make so he begins the day with what we call breakfast basil. And that is his so his regular basil rate now is probably point three or point four per hour. And he gets point nine an hour for three hours through the brackets that make sure that anything he eats doesn't send them

Scott Benner 44:55
out a ranch. Yeah. What's the time for that? What time of day is that? Three out was

Adam 45:00
530 to 830 in the morning, okay,

Scott Benner 45:04
where's the go after the point nine.

Adam 45:07
And then we stepped down to point 7.5 Over the next two hours because at that point is going to try to take a nap.

Scott Benner 45:19
Okay. But the foods still having some impact. Exactly. Okay.

Adam 45:25
So we still need to get insulin network up and feeding itself. Now

Scott Benner 45:33
do you ramp it back up for lunch?

Adam 45:35
Yeah, so we ramp it down for nap. And he gets point to an hour when he's sleeping. And then sort of at one o'clock starts, right, we start ramping it up again. And he generally wakes up between one and 130. And he'll have something to eat soon after that it doesn't wake up super starved, or like he's missed lunch or anything. But we usually try to let the Basal the head a little heavier basil soak in, and then we

Scott Benner 46:07
feel Yeah, that's amazing. You guys are doing a great job. You know, right. Thank you. Yeah. Yeah, like, I mean, it's nice to hear, but I imagine you're aware. How often do adjustments need to be made? As he's gaining weight? Time? How do you do it?

Adam 46:25
Yeah, so we usually find we have to go up his Basal rate a little, every few months. When he gets sick. We have other basil programs we run, depending whether it's a rhino virus where he needs more basil, or if it's a gastro virus, and we'll need less. So there's a kind of be adjustments you made. Yeah. And then also growth hormone. Which can really,

Scott Benner 46:54
and you're seeing things off. You're seeing that overnight, mostly. Mostly.

Adam 46:59
Okay. Sometimes we see it a nap, but mostly at night. Okay, he'll just kind of start going diagonal up not stopped for a couple hours. And we Bolus sometimes for that. It's getting really up there. But mostly we let the Omni pod take care of it.

Scott Benner 47:18
I wish I had you guys slow march. I wish I had you guys. When Arden was to see me back then with those half unit insulin pens and or syringes and juice boxes everywhere and testing while she was napping constantly and staring at her while she was napping and wondering what the hell was going on with that stupid meter and nothing else? Yeah, I wish somebody would have. I should have made this podcast sooner for myself as well. I was thinking while I was listening to you, because you're having him as crazy as it sounds. And it does sound crazy. You're having a much better time at this than I did. So.

Adam 47:55
I'm glad we think that all the time. We're very grateful for the advanced medical devices that we have. We think how much harder it would have been even a year before.

Scott Benner 48:05
Oh, no kidding. It's you. Jeez, I wish I still had that old meter. So you could say it was my all my gear was a meter and test strips. And these just needles that were everywhere. That um, we still have some by the way. Like, like, if we ever give Arden an injection like we're like, Hey, I'm not sure if your campsite bad or not. Like let's try to inject here. I'm working from needles that we bought, I mean, roughly 11 years ago that are still in a drawer where they work great, by the way. But um, yeah. So every time I pull one out, it's like a, I get into a time machine and go back to a time when I was just panicked constantly. And really exhausted. So. Okay, so Omnipod five is doing great for you overnight. You're using it in manual mode during the day. My last question about that is was there a learning curve of switching out of manual into auto and out of auto into manual?

Adam 49:07
Yeah, we tried running it in auto during the day when we first got but we would get these really big spikes when he was eating. And so we kind of decided, okay, well, we at least have to put it in manual during the day and we'll do the prescribed Basal rate. And that allowed us to make these intricate basil programs that we use now with breakfast, basil, Sig basil, and all that. So,

Scott Benner 49:38
Adam, what about when you're coming out of the daytime out of the manual? And you've been using much more basil than the algorithm expects? Do you have trouble with Lowe's coming out of manual into auto or have you figured out how to do that pretty well? Yeah,

Adam 49:53
it seems to be pretty good at it. We haven't had much trouble with that. Again, overnight. ate it kind of depends on the night of he's gonna get growth hormone.

Scott Benner 50:05
Yeah. Okay, so it's not been a probably, yeah, not

Adam 50:09
really not a persistent one. But maybe Robin wants to chime in on a little bit more on that.

Riva 50:15
But I don't really understand the question. So

Scott Benner 50:17
my thought my, what I'm seeing with some people is if they do manual during the day and then go into automation, the automation, if they come out of it with a big like, insulin on board, but number, the automation can't stop a low that's coming. So you have to kind of learn when to flip it back into auto. And I was just wondering if that was the thing. It doesn't sound like it was a problem for you.

Riva 50:40
I mean, we, we, you know, we're calculating, you know, what's the IB? What are the cops on board when we're putting them to bed. But sometimes we get it wrong often. So we're putting a sweetheart in his mouth while he's sleeping. Or, you know, we were watching it if he's gonna go low. We just, you know, treat him and keep letting Otto do its thing.

Scott Benner 51:08
Ya know, it sounds like a good plan. What am I not bringing up that I should be? Well, what do you want to know about breastfeeding? A beedis. Baby.

Adam 51:27
I mean, I could explain how we kind of got to a point of being able to

Scott Benner 51:31
Bolus well for it. Yeah, please.

Adam 51:35
So in the hospital, they told us that breast milk has two grams per card, per ounce. And so that's what we went with for a while. And trial and error. Most of the errors showed us, that wasn't the case at all. Even when you'd have what Rocco would say, an ounce a small amount, he would go up really quickly, to idle up or straight hot. And so we gradually started assuming it was more carbs per ounce. And Dr. I got better at estimating the number of ounces that she had available and that he would eat. And so we gradually got to a number of five grams per ounce, okay. And that's all really dynamic, too. We have to go with an average. There's lots of people that's just to get your breast milk analyzed for the number of carbs and in but Rive can chime in and tell you how dynamic that number actually is. So even getting tested once it's just a snapshot in time. That

Scott Benner 52:48
is, is it impacted reiver By what you eat. Or no,

Riva 52:54
I don't know that carbs specifically, are impacted by what I eat. But I can say that generally, the composition of breast milk is at Adams using the word dynamic. So where that's often used, breast milk starts out very high fat for a newborn, it'll change over time. The milk that's at the front of your breast is higher in carbs, and lower in fat. It's called the for milk. Okay. There's been milk that if the baby would keep eating, it's called Mind milk. So that's got the fat. If the baby is sick, the milk becomes fattier iron protein. Yeah. It develops antibodies that are specific to a baby's a virus a baby may have.

Scott Benner 54:00
How do it know? How does it How does it know what's I mean? That's crazy. feels it feels a little crazy, but that's amazing.

Riva 54:09
That's amazing. Yeah. There's receptors in the nipple. Adam wood. I don't know. Maybe you know more about science of it. But that when the baby's when the virus in the baby's mouth was transferred to the nipple. It changes the milk over the course of a couple of hours and days.

Scott Benner 54:31
That's insane. He actually went to a feed Sawyer, he just sent a note. So

Riva 54:35
okay, I was going to ask him to go feed him.

Scott Benner 54:39
So somebody will do it. So you're telling me that that's insane. So the virus that's in a baby? The nipple senses that changes the milk to help the baby?

Riva 54:51
Correct. It's like personalized medicine. Oh,

Scott Benner 54:56
I didn't know they could do that. Yeah, what else can new policies that I don't know about. I'm not gonna Google that guy ever. Yeah. Right, what'll happen? So that's insane. It really is. Can I ask, like a mom question? Your middle one? Do you think? Do you worry about that the, like focusing on needs that, then you run out of time, oh, if your oldest needs things and your youngest needs things, that your middle ones just kind of chugging along.

Riva 55:30
So she's our only girl, I did find out recently that siblings of kids with differences in disabilities are sometimes called Glass children, really, because for two reasons, one, prep, they may become fragile, you know, the idea that they may be not having their needs met. And then also that they report a feeling that their parents maybe looked right through them, you know, I looked past them, when they're growing up, we worry about all our kids in the sense that we want to walk with them on their journeys, and be the supports that they need. So some of them are in something called child centered play therapy. Some of them have their needs being met. In other ways. The best support we can give to her is to put her in public school and have her in front of opportunities where she can do her own thing. Nice, it's good for her, she loves it, it's a good fit with her personality to kind of be out in the world. Good.

Scott Benner 56:58
That's excellent. I think being aware of it's probably one of the best things you could do. Yeah, yeah. Because the example I always kind of fall to is even, even in families where there's no trouble data like that you can just point to easily. Sometimes you just have a kid who doesn't need as much help with their homework. And the parents give more help to the one that does, and you can later get reported back as they get older. Like, you know, nobody helped me with my homework. And they'll say like, I didn't need it. But that's not the point. That's not how it feels, you know? So sometimes it's just nice if your parents turned to you and are like, Hey, how's it going? You need help? Yeah. And there's only so many hours of the day. It's just Gosh, this amount of time just isn't enough time. Do you see a light at the end of this tunnel for you as far as time and effort goes?

Riva 57:58
Like I think Adam said, just recently, we've graduated ourselves from the quagmire to just a pickle to now. We were trying to figure out what's this season called? And, you know, Adam, the other day says, I've got it. This is the new normal. And it felt really good to think now we're just living.

Scott Benner 58:30
Yeah, just this, maybe every moments not going to be our and that you can do like you're really you guys have like a different rhythm now? I

Riva 58:41
think so. Yeah. Yeah. One of the main challenges we have now and I would say have had since diagnosis is that Sawyer is little, and babies and toddlers are annoying. It's a lot. His toddler newness is often harder to manage than his diabetes.

Scott Benner 59:11
Yeah. Oh, that's, that's kind of nice to know, don't you think? Right. Yeah. Yeah, that's that's very nice to know, actually. So the diabetes as it becomes more familiar, and your experiences build up, you start kind of knowing what to do more intuitively. It does fade into the background.

Riva 59:30
Yeah, I remember you saying that. Maybe you say it all the time. But you said on a podcast I listened to maybe one or two weeks post diagnosis. You said one day it just fades into the background. I think I really held on to that. And in the wee hours of the morning, when things were difficult and like you just said When Everything Feels like a nightmare. I just thought you know, event Really, this will be part of our lives. And we were already tuned into what I refer to as differences in disabilities, because of our oldest, we'd already become sensitive to parenting a child with the unique path. And we hope that this would sort of fall into some kind of rhythm to eventually. Yeah,

Scott Benner 1:00:27
I mean, and yours is positive rhythm to some people fall into a negative one where they just don't understand the insulin or, you know, and yeah, then that just becomes a completely different story. So your story is, it's so weird to say, because I know it doesn't feel like that probably was it's a real it's a success. You know, you have a success story here. It's wonderful. Honestly, I feel really good about it. You're too tired to feel good about it. But from the audio feel good about it. Good. Oh, that was back. That was nice. What, what did he was that?

Adam 1:01:04
Oh, I gave him iron bar. So it's got nuts and little bit of chocolate.

Scott Benner 1:01:14
Was that for a low blood sugar or just hungry? He

Adam 1:01:16
was trending down. So it just kind of, we're not in the treatment territory. It's just a good thing that I'll bump them up and be pretty even.

Scott Benner 1:01:28
This doesn't need insulin because of the situation.

Adam 1:01:30
Yeah, he's gotten kind of gastro budgie the last day or so. Okay, so we're trying to like, ramp down the basil, but I think we've got a little too much on right now. So he was just calming down more than he should have been a little heavy.

Scott Benner 1:01:47
Yeah, I've been. I'm trying a new algorithm with Arden. So I just put it on, like 24 hours ago. And I'm still doing a lot of staring, trying to, like, is this right? Do I turn this knob? Not yet? Maybe what is this happening? That'll go on for a couple of days, where we decide if we're gonna try this one for a while or not. But um, anyway, it's it's uh, it sharpens every sharpens my skills aren't like, why are we doing this? She's like, loop theory works great. I was like, I know, I'm like, let's just try this and see what happens. So you could always just now that they're just, you know, when you do DIY, it's there's just two apps on our phone, like it just shut one off and try the other one. And if you don't like it, you can just restart a pod with the old one and just go right back to what you were doing. So given Iaps a shot, and seeing how that's gone, which I can say on here, because nobody will hear this for like six months. So plenty of time to cover myself. Okay, like so let's get to the most important question. And I'll let you guys get back to your life. When you listen to the podcast. It's on two different devices. Right. So I get two downloads. It's not just one.

Riva 1:02:58
I read the transcripts.

Scott Benner 1:03:01
Oh, forget my question, then. You. Thank you for bringing that up. I never know who the hell is looking at this.

Riva 1:03:12
Mom's mom's.

Scott Benner 1:03:15
So you read the podcast.

Riva 1:03:17
I have to read it. Our kids. So our oldest is homeschooled. And saw us here. They're always with me. And we're pretty careful about what content they hear. And especially our oldest is, you know, understands everything he hears. So I read them on my phone. When I'm putting someone to bed. When I'm cooking, I have an open reading it bits and pieces.

Scott Benner 1:03:51
I'm not appropriate for your nine year old is what you're saying. I agree with you

Riva 1:03:55
listen too much. Oh,

Adam 1:03:57
I also try to make sure they don't get a huge heavy dose of diabetes. talk all the time. I

Scott Benner 1:04:05
think that's yeah, yeah, that's a good idea. I also don't think I'm appropriate for nine year olds in case any Well, that's who we were just being kind. No, oh, you're Canadian, I didn't realize

Adam 1:04:20
will apologize for that after that.

Scott Benner 1:04:23
explicitly and for hours. We're so sorry. We don't know why. But no, that's so cuz I that's the thing, right? That's like an expense for me. And, and it's time and I do it. And I'm like, is anyone looking at this? But I know I know people do. It's just so hard to imagine. Like for people who wouldn't think to do it, if that makes sense. But I'm glad it's there. That's great. They're getting better and better. I was looking into a new company recently who runs the transcript. And at the same time each transcript gets its own AI bot. And so instead of asking a question of the whole website, which AI doesn't seem to be up to steal, it is very good when you only give it a few 1000 words. So for example, Jenny and I didn't, what do we do a math of Basal insulin or ISF or something like that, where we just have like a super chatty conversation about how to set up a setting. And I've been messing with it. If you go to that AI and say, I weigh this much. And I forget what else you have to say to it like something very simple. What's my insulin sensitivity factor? Like what's a good starting place for it? It actually goes through the text and comes back and gives you an answer. Crazy. So yeah, so I have an imagination where one day you'll be able to go to the website and ask diabetes questions and get rock solid answers from out of the AI coming out of the tax. So anyway, that's all one of my long term goals that I don't tell anybody about. So anybody who's listening right now, don't bother going and looking because I didn't do it yet. But it's but it's happening. So Oh, I'm so glad you do that. Alright, so fine. So you can't just download them and delete them to help me I don't understand. Right? I don't really ask for a whole lot.

Riva 1:06:17
I can't do that.

Scott Benner 1:06:20
It's, we're on on to one of our best months ever. As we're talking. I'm looking at the countdown for the next 36 hours on Michael, I think we're gonna make it to a pretty cool number. So anyway, you guys were terrific. I really do appreciate this. Thank you so much.

Adam 1:06:36
Do you too? Yeah, no,

Scott Benner 1:06:38
no, it's my pleasure. It really is. Yeah, we're very happy to give back. And you definitely have this is a terrific conversation. So I mean, this is how the podcast grows, everybody gets done. And they'll say to me, like, we'll get on recording, and sometimes people will go, I'll understand if you don't use that. And I'm like, why? Like, I don't know what you're saying. I was like, No, how many of these do you think I've never used? Anything I've just recorded and going not that one? Not that when I'm you've pretty much heard every conversation I've ever had with people with diabetes. And, you know, everybody comes from a different perspective. And I think in the end, it ends up helping somebody so terrific. So seriously, yeah, I appreciate it. Can you hold on for a minute for me? Yeah. Great. Thank you. So

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