#223 Johnny's Mom Took Notes

From Phone to Podcast…

Allison and I spoke privately last year about her son's type 1 diabetes. In today's episode you'll hear me realize that fact way too late into the episode.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello, and welcome to Episode 223 of the Juicebox Podcast. Today's episode is sponsored by dancing for diabetes Omni pod Dexcom. And real good foods. There are links to all of the advertisers in the show notes of your podcast app at Juicebox podcast.com. And by now I'm hoping stuck in your head because I've done this a bunch of times. For more information about on the pod, go to my Omni pod.com forward slash juice box. And to find out about Dexcom, you can go to dexcom.com forward slash juice box dancing for diabetes is at dancing the number for diabetes.com. And it real good foods calm you can save 20% on your entire order by using the offer code juice box at checkout. I have a lot of have to say during the music. So let me get right to it. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise Always consult a physician before making any changes to your medical plan or becoming bold with insulin. And later in this episode during the dancing for diabetes ad, you don't want to miss it because they are announcing a giveaway. And what are they giving away a phone call with me where you can talk about whatever you want. So stay tuned for that. Today I'm going to be speaking with Alison Johnny's mom. She's a person who I spoke to on the phone a long time ago and sort of did the podcast for her privately it seems like and this is going to be a little follow up, find out about their lives and see how they're doing since she and I spoke.

Alison 1:38
My name is Alison, I have a almost nine year old boy who has type one. He has had type one for just about four and a half years. So you're kind of at this point where he has had it at half of his life and half not because he's just about to turn nine. And he has an amazing boy named Johnny.

Scott Benner 2:03
Was Johnny in kindergarten when it happened?

Alison 2:05
No. So Johnny was finishing up preschool. And he was registered for pre kindergarten because here in California, you have to have a September birthday. And he's November. So it was so easy. His whole time in elementary school. He's had it.

Scott Benner 2:19
That's actually I would think better. So did you? Did you sort of you leave him in preschool? Did you bring him back home? What did you do during the diagnosis time for that?

Alison 2:28
You know, it happened Mother's Day weekend. So he had about a month of school left for preschool. And we weren't quite sure what to do. Because,

Unknown Speaker 2:36
um,

Alison 2:37
I called the preschool director. And I said, you know, here's what's happened. And they said, you know, like, they had to meet with their board, because they're part of a church to see if they were willing to take on the risk. But they, you know, they Johnny had been there since we were doing baby and me. So they just adored him. They wanted to do what they could I am I also had a little one at the time. He wasn't even I think he just turned two. So the director like, you know, we met and she learned to finger pricks, and we're like, Alright, let's just wing this. I mean, I kind of remember your stories where you said, You sat in the parking lot with Arden and I kind of did the same thing with Johnny, I would just, I go and be like, Alright, let's you know, let's see what happens. And I'd get called from the director, you know, he's crying, we think he's like, low, and I'd go over there. And he's like, 400. And I was like, no.

Unknown Speaker 3:27
But we got through it.

Scott Benner 3:28
Did their fear outweigh their understanding? Do

Unknown Speaker 3:30
you think? You know, it

Alison 3:32
was interesting. I know, several of the people here, when we had the meeting with the faculty were like, Oh, we have our, you know, my parents of type two. And so I know all about this. And it was like, you know, we were still no one in our family has type one. And so for us, we were like, We don't know,

Unknown Speaker 3:47
you know, at the time,

Alison 3:48
we didn't even know much of the difference between type one and type two, we were like, great, you know, something? You know, I think they loved my son, and they wanted to do what they could. Yeah, um, and I appreciate that. And I think he had like, he was only going three days a week, right? So and he didn't have a dexcom he wasn't on a pump. And so we, you know, we made for the whole world and our whole world change, like everyone's does, and we just, we made the best of it for that month. Um, and then we brought them home for the summer.

Scott Benner 4:18
We didn't have any real context. So anybody who who offered up I know, don't worry, you were like, Oh, thank god, there's someone around me that understands this. It is an interesting position to be in. Why do you think you had such a limited understanding in the beginning? Was it just like, did your doctors not explain things in a certain way? Because it's an interesting thing to say that I wasn't even I was still confused between type one and type two.

Alison 4:43
Well, it was weird. So I mean, you know, the whole the whole day when he was diagnosed was so weird and even leading up to it because both my children about three months before had strep throat, and my little one bounced back immediately. But Johnny, he was four at the time. He went like through two rounds of antibody biotics. And it was weird as the night he was diagnosed with a strep, he started having potty accents, which was like nothing, you know, and, and for the whole month and like he started having the thirst and like going to the bathroom all the time. And I actually his pediatrician tested his blood sugar during that time, and it was like 70. Okay, so, you know, going into like, when, and after three months of just this continuous behavior, when I took it back to the pediatrician, I'm like, Look, there's something wrong here. And when they finger picked him, he was 330.

Unknown Speaker 5:31
And that goes Johnny's meter.

Alison 5:35
And, you know, but the pediatrician was like, Oh, you know, they gave me the devastating news, he had typed type one, and you know, I'm crying, and they have to take my kids out of the room, and they're like, you know, we're gonna send you to an endocrinologist who can tell you about food, they're gonna give you some insulin and send you home. I was like, you know, okay, I call my husband yet my mother's an RN, nurse. So she came, my best friend is a pediatrician. So, like, everyone met us at the pediatric endocrinologist. And suddenly, he's throwing, you must go to the ER, your life is changing. Like he was so serious and scary, that we couldn't comprehend anything anyone was saying.

Scott Benner 6:11
So I tell you, every week go to dancing for diabetes calm, and you really should support them, and check them out on Facebook and Instagram and everything, and a lot of you do, which I appreciate, but I just wanted to do more for them. So in May, I'm actually going down to speak at one of their events, and we were trying to figure out a way that I could help them, you know, fundraise, here's what we decided, dancing for diabetes. And I have teamed up to give away to not only the people attending the conference, but to you, the listeners to the Juicebox Podcast, an opportunity to speak with me. So if you would like a chance to chat with me one on one, I'll be conducting 245 minute phone calls or Skype, you know, FaceTime, whatever you got, as well as one big one hour call, that includes a 30 minute follow up. So there's three calls in there to 45 minute calls. One one hour call that includes a 30 minute follow up. That's three opportunities to ask me anything you want, talk about whatever's on your mind. So while I'm at the dancing for diabetes event on May 30, I'm actually going to choose the winners at random. Before I leave the conference, to have your name included in this opportunity, go to dancing for diabetes.com and click on the donate today button between now and may 17. There's a suggested donation of $10. But I don't think dancing for diabetes is gonna get upset if you donate more. And all you have to do is be sure to mention juicebox in the notes of your donation. Those of you who do not have internet access, although I don't know how you would get this podcast without it. Or if you have an inability to make a donation, you can mail your name to dancing for diabetes, go to their website for their contact information. I hope to see everyone at the conference in Orlando. But if you can't make it, this really is a wonderful way to pick my brain. We can talk about the Avengers movie or Brexit, whatever you want, even, you know, diabetes.

Alison 7:58
He was so serious and scary, that we can comprehend anything anyone was saying,

Scott Benner 8:04
you got you got flipped out. And you were just like, yeah, I hear that. Like, I feel like it happened to me. My wife was just retelling a story the other day about when my daughter was diagnosed, and they came into the room to teach me how to teach us how to carb count. And there was like some fairly simple mathematical equation that had to do with fractions and everything. And five minutes into it. My wife's like, he just started to cry. And I was like, I was like, I don't understand. I'm like, Oh, my God, I don't understand seventh grade math all of a sudden, you know, like, it really just shut my

Alison 8:33
my background, I work in finance, but I couldn't get the math like I my brain was on shutdown of my poor son like I, you know, like my husband, he's, you know, he's got a physics degree. And so he had to kind of take over at that point, because I remember just crying when we brought Johnny home. And I was like, I can't do two plus two, like,

Unknown Speaker 8:52
I just got lost. I

Alison 8:54
you know, but the hospital was so scary because they were like, you know, the nurses, he's in the PICU. And the nurses are like, okay, you have to fit me, they brought a tray of food. They're like, you have to count these cards. They were like, What are you talking about? And then they're also like, your son cannot leave the hospital until you and every single person who comes in contact with him can count cards and gift shots.

Scott Benner 9:13
Yeah, we'll just take a tiny bit of I know, they don't have the time probably but it would take the tiniest bit of compassion during during those conversations to really make a huge difference, you know?

Alison 9:24
Yeah. And it's weird as well. He was I mean, he was one of the first to come to pick you while he was in the PICU two kids came in to UK. And they're like the nurses are like yeah, lucky he wasn't like them.

Scott Benner 9:36
When you look back, we look back now Don't you wish she were like you now so you could be like, Hey, why don't you go to hell? Why are you talking to me like that? Like I don't I did you feel Do you in hindsight feel like, like that was not valuable. Imagine?

Alison 9:51
Oh, absolutely. Because at one point my husband he had called we called in. All of our parents are divorced and remarried. So we called in every grandparents we had people from all over This tape Come on my sister came our nanny came everyone came to the hospital and spent two days learning how to take care of Johnny. And at one point, I guess the doctor had come into the PICU. And because we weren't there, he got all upset. And when we finally went back, he was like, yeah, you weren't here for me. So I'm not here for you when he left. The doctor did that. Yeah. We don't see him anymore.

Scott Benner 10:22
Where are you aware? Are you are you like seven miles off the shore in California?

Alison 10:27
You know, it was, it was a very rough start. Fortunately, I learned as we were learning all this, that's a dear friend from high school is an endocrinologist, and he sees kids. So dad has changed everything for us. Like we ditched the other doctor, we moved to him. And it's been an amazing experience since then, because we get the comforting support we need.

Scott Benner 10:48
I'm always interested when I look at, I was just looking today at the map of where everyone listens that like all of you guys listen from. And it's so global. It's incredible. Right? There are very few there are very few countries that don't download this podcast, which is is really something I was contacted two days ago by a woman in Australia who's like, can you come here and speak to my group? And I was like, Yeah, I guess it's sure you help me work it out. I've never been to Australia before, but I would love to ride on a plane for 19 hours. And but but but my point is, is that there's places you know, the listeners come from everywhere. But a disproportionate amount of Californians listen to the show. Really. So I know the state is obviously much larger. But if the numbers still don't bear out, it's there's more people listen, I guess, per capita in California than almost every other state in the US. It's really it's really interesting. I never I'm never gonna figure out why.

Alison 11:47
I Well, you know, it's weird when Johnny was diagnosed. The endocrinologist said that where we are living there had been in the last year a 30% increase in children develop developing type one. And a lot of them were not hereditary.

Scott Benner 12:00
Maybe that's my answer. Yeah. Not hereditary in a way that you can see when you look back. So what is your history?

Unknown Speaker 12:08
No one.

Scott Benner 12:09
How about other endocrine issues? hypothyroidism? Nope. silly thing.

Alison 12:13
This is like our No, this is our first I mean, we have you know, our parents are like, possibly type two, you know, but nothing. Yeah,

Scott Benner 12:20
no. Interesting. Well, you're just you and your husband are just the lucky combination.

Alison 12:25
Yes, he got super lucky with this brand new at least I'll tell you this. At least Johnny's amazing. He handles it. And I could not have asked better. I mean, I have parents who come up to me and are like, shots of just how mature he handles it. And I think it's he doesn't remember life before it.

Scott Benner 12:42
Yeah, I do wonder sometimes I don't think Arden has a perspective at all prior to diabetes.

Alison 12:48
I know it makes me a little sad. But it's I he takes it with just he just does it. He's a normal kid. And diabetes comes along with it be

Scott Benner 12:57
sad if you want to be but I can remember not being married. And that just makes me sadder.

Alison 13:04
I remember getting sleep vaguely.

Scott Benner 13:06
Exactly. There's things I remember a little too well. How's that? like five minutes by myself? Yeah. Okay, so so Johnny is diagnosed. You said in the very beginning, obviously, there was no how soon until someone mentioned to you Do you guys want to do pens or a pumper? Like when did it start becoming less people yelling at you and more kind of common decisions being made?

Unknown Speaker 13:28
It's hard to you know, it's

Alison 13:29
hard to remember the craziness in the hospital. I mean, I remember, you know, my husband, I think my husband and my mom went but then to get them all stuff. And then nurses are like, okay, you have to call the insurance and your insurance, you have to figure out what meter they cover which pen they cover, like, what's a pen like I? So they had us, you know, and it likes everyone else's story. They had us leave the hospital with one bottle, Atlanta's one bottle of homologue a bag of syringes. And they're like, go to your pharmacy on your way home, pick up a pen pick up, you know, if we're like, Okay, um, is that, you know, it was trying out that summer. It was like trying to figure out how to get all this together. How to, you know, I had to sit on him. At four years old, I had to chase him around the house and sit on him to give him a shot. Because I can't blame him. He didn't want them. Yeah, um, and it was just it was a rough training out getting the car counting. And you're and then also like, I had to cancel all of his summer camps, because he I work from home at the time I work part time. But they're all of them were like, We're sorry. We don't have a medical team who can watch him. Yeah.

Scott Benner 14:33
Yeah, they don't know what to do. And listen, in fairness, you didn't know what to do either. So it was Yeah, right. So it's, yeah, it's, it's very difficult to be upset at somebody for not understanding your disease.

Unknown Speaker 14:44
I mean, no,

Scott Benner 14:45
I even I sit here now and I realize I understand this. But you know, I'm sure there's any number of things that other people are living with, I would have no frame of reference whatsoever. So it's just it's just it's with a four year old. Going to be a five Like, Hey, can I drop my kid off with this insulin that might kill him if you do it wrong? And by the way, I'm not 100% sure how to use it and good luck, you know, like, and you wouldn't put him in that situation to begin with?

Alison 15:10
No, in the end, you know, and we were hearing terms like an insulin pod, but we didn't know one was we had not heard of a dexcom yet.

Scott Benner 15:18
Today, we had a little bit of a waffle catastrophe. Arden chose waffles for breakfast, and my wife Pre-Bolus for them. She wasn't sure how much exactly to do. And she was about to ask me, but she got some units moving. You know, at the right time, just get some momentum going on the insulin side like you hear us talk about her on the podcast. Anyway, a second or two later, she texts me She says, Hey, Arden chose waffles. This is what I did. What else should we do? And I said, Oh gosh, the pumps about to run out of insulin. I was gonna change it this morning, I would have changed it before the waffles Had I known. But no matter. I'll come down and do it now. came downstairs, change the pump. waffles are already in the you know, being warmed up with her on the new pump put in more insulin, you know, change some bazel rates kind of ramp them up a little bit. But now the question is right, this is a new pump. It's a new site. Is it going to work? Well, I don't know. But you know, we already promised the waffles and how do we keep on top of this? Well, the answer is simple Dexcom. All I did was watch the data coming back from the Dexcom. And adjusted appropriately. We got through this lawful catastrophe, if you want to call it that. How about with a blood sugar that never went over? 170 I'm looking at it right now to make sure I give you the right number. That included me leaving the house and going somewhere and continuing to manage this remotely. How do I do that? Because Dexcom has Sharon follow. And I have an iPhone. Actually, if I had an Android it would work as well. So I was able to see Arden's blood sugar while I wasn't in the house continue to make adjustments to her insulin based on the information coming back from the Dexcom we got waffles got through a whole pump change a pump change in the middle of a waffle meal. I want you to let that soak in. Never over 170 got it right back down hour and a half later with Dexcom. Let me see you do that without Dexcom. Go to dexcom.com Ford slash juice box are the links to show notes at Juicebox podcast.com. To get started today, these are my results. Yours may vary.

Alison 17:14
We were talking about like you know the old endocrinologists were like okay, what should we be doing next? You got to get this right first. And we were like, okay, you know, thank goodness, two things happened. Um, my husband's cousin had a friend who had a daughter who was type one. So she allowed me to call her and email her all hours of the night, when I had questions like the night we gave him way too much insulin when he was going to have some s'mores. And we were afraid he was going to crash in goes to low super low. I was nervous to call the school he was going to go to the elementary school because this you know, everything had changed for when I registered him. And we got the most amazing health clerk who was like, You know what, hey, we haven't we have two type ones here. And one of the moms has said if another mom ever calls give the number. So over that summer, I met this mom who had a son who was I think in second grade, and she had a son who was going to be in my son's pre k class. So I got to connect with another family. And that helped the transition. I had two sources of people I could go to when I was super overwhelmed. Not

Scott Benner 18:12
great. You had your own little personal, like, three person community. Exactly, yeah, it's excellent. It's so needed. It's, as I sit here and think about what I'm going to do tomorrow, I had to I'm given a talk tomorrow. So I had to, I had to pare my thoughts down, because we're gonna do, we're gonna do the podcast live for the first time. So it's gonna be, you know, a half an hour of the podcast and a conversation, and then it's going to transition into more talking about management stuff. So I had to really pare it down. And I got it down to like five, like, you know, simple thoughts. And one of them that I couldn't remove as I was looking through what I thought was important was was the sense of community, somebody to reach to. Yeah, you know, it just I don't see how I mean, it's just so much easier when, when that exists, because look at you, you were willing to listen to a person working at a preschool Who said I have I know somebody with type two diabetes, there was a moment in your life where you were like, you are the source of all knowledge.

Alison 19:10
Well, you know, at least I had, you know, I had also with my mom being here was a nurse, she had at least a little experience, not too much of diabetes. And at least I also had a friend My friends, a pediatric cardiologist, so again, it was like they had snippets, but they didn't want to, to advise because they're like, this is not our expertise. Yeah.

Scott Benner 19:28
And what that and that's a very polite doctor way of saying I really don't know what you're talking about. Yeah, much. I I went through medical school and we read about this. That's pretty much what they what they get. And so you know, it is what it is. Exactly, it gets a little more confusing when it's your endocrinologist who doesn't seem to understand or or says what they said to you. Like we like think about it you I heard you say there was a moment where you thought we're ready to find out what else there is. And they told you no. Yeah, like, just stop. And that's what's that four years ago, right?

Alison 19:59
It was Four years ago, yeah, just a little four and a half. And my husband, we're talking today like I even remember going in at one point to his office, you know, he was the lead endocrinologist in this area. And you know, first of all, super too many patients too little time. He was so busy, he sent some sub doctor who like changed all of my son's numbers. And we were already weren't understanding he was in the honeymoon phase. We weren't understanding what to do. And this new doctor comes in is like, you're doing everything wrong. Do it this way. And his numbers were atrocious. And based on that,

Scott Benner 20:31
he fixed it real good. Did he? Oh, yeah. So where this is interesting, where were you when he said, this is not you're not doing well? Like what do you what what did that mean? But you know, average blood sugar and stuff like that.

Alison 20:44
I felt for years, like I was failing and all this. And I felt like you know, every eight one c test I dreaded with a pit in my stomach because it was a report card. And there's my big fat f when my son's a one C was not where I wanted it to be. He was on. I mean, one first pocket I think I listened to you of yours was the roller coaster. And it just made me cry. Because I just it was it. We just we thought we would get this, my husband and I and then we would just lose the control.

Scott Benner 21:12
So let me tell you what I told Rosa on the phone last night, Rosa, if you're listening Hello, I was speaking to Rosa and her 22 year old daughter, because I just happened to be online yesterday. And I saw somebody put a graph online that looked like jagged teeth from a pumpkin. It just went from 60 to 460 to form up and down up and down all day long. And it made me sad. I didn't know them. And I just I had some extra time here saying I reached out. I was like, if you have any interest, reach out and Rosa actually called. And I joked with her I said, um, I said, Well, this is how desperate you are. You've called a stranger on the phone about a situation. But but the I guess my point is, is that I ended up saying to her the same thing I'm going to say to you which isn't it amazing that somebody is willing to give you no tools, no understanding, no instructions? And then have the nerve to tell you, hey, you're doing this wrong?

Alison 22:07
Oh, yes. It's like, because there was no he had no CD. So there was no one they had no nutritionist he I mean, it was we were just trying, you know, suddenly it was like, well, do we ban all foods? Yeah. And some of us even I mean, the transition also into when we saw we switched to seeing my friend, my old high school friend for as an endocrinologist, you know, as we still couldn't get the control. And he kept trying to talk to me, oh, Johnny was on Johnny's been on shots only, he's only gone on an ami pot about a year and a half ago. So we so for the first two and a half years, we were doing shots. And we kept asking, we're like, what are we doing wrong? He's like, well, you need to Pre-Bolus. But you got to figure it out. And we were like, you know, should we do low carb, he's like, at least a one piece of ice that goes with the low carb, he

Unknown Speaker 22:47
said is look,

Alison 22:48
you could do that. But I'll tell you right now, when your kids a teenager, he's going to rebel ate everything under the sun. And then you're going to have a real problem on your hands,

Scott Benner 22:58
I just think then you you're going to lack the understanding of how to in the end, it's all just understanding how the insulin works. It's such a, as I was explaining it last night, on the phone to a person who I'd never spoken to before. And I was sort of with an eye on thinking about this conversation, I'm gonna have to speak to him enough to give on Sunday, I was just thinking, I was like, Wow, it really is. As long as I've been doing this podcast, the absolute core of the truth is that this whole thing is about the timing and amount of your insulin and understanding how it works. Like it really everything else grows from that seed. If you if you don't understand that the rest of it is just, you know, the person on the phone was like, Well, what about Temp Basal? And what about extended bonuses, like yeah, that stuff's all incredibly valuable, like, but you're so lost at this point, you just have to start over, you have to just scrub it down to nothing and and start with, let's figure out how long it takes your insulin to work in your body. And then we'll work on Pre-Bolus. And then you can start working on adjusting amounts and Pre-Bolus times and until you can kind of kill the spikes completely. I was like, and from there, these other ideas will grow. But you can't, you can't turn to page 84 when you don't understand the first you know, 83 pages and just go I'd like to get to the advanced stuff now. But the problem is, is that somebody said to them, You know, I think you could use an extended bolus there. And then they don't know they're stuck in the same spot you're at, they're talking to the lady at the preschool who's like, I know, somebody would type to me like Alright, well, you know, more than me, you're in charge now. And so,

Alison 24:26
you know, and that's what's funny is even when, you know, we let Johnny decide when he wanted to go on a pump. He fought us for the first couple years and I'm like, that's fine. I'm not gonna stick something on you. If you're not willing, you know, you need to be a part of this conversation.

Scott Benner 24:38
You are so California. You bring that kid out here. I'd be like, Hey, this is a Pompey like I don't want I back doesn't matter stuff the rd you're good. And here's $100 make it go away.

Alison 24:51
He felt like he got he got this. He got a bum rap. And so he he for the first few years didn't have much say he didn't have say when we had to stick him All that kind of stuff. And he came to us about because it was a year and a half ago and was like, Okay, I'm ready. And we're like, okay, so I was at least, you know, I was on the forums, and I was on Facebook, I just don't like so I knew all this terminology. And when we went with the Omni pod people, I was like, Alright, how about Temp Basal and extended? They're like, well, we're gonna teach you the basics. I'm like, Well, no, I don't want the basics I need if we're gonna do this, I'm jumping all in, right? And even they were like it, congratulations, you know, the words, not gonna teach you it.

Scott Benner 25:26
So here's what I think it is. And if I'm gonna say two things, first of all, I was mainly joking, I think what you did with letting him come into it on his own, I think that's an incredibly smart idea. I'm probably not a very good parent. But I grew up on the east coast. So nobody really ever took my thoughts into account as a child. So I have a limited understanding of my kids thoughts. Although, you know, one mistake not to get sidetracked too long. But this is a absolute generality, that will be true for everybody never let your kids decide the restaurant. It just a horrible thing you don't like, Where do you want to go? And the next thing you know, you're like, I would just let's not eat. Anyway, going back to what I was saying. So sorry, I just had that happen the other night where we're all sitting in the car looking at each other. And my thought was, why don't I just go back in the house? We're never leaving this. Oh, see. Now

Alison 26:10
if you had a conversation, my little one, it's always Taco Bell, and he refused to go anyplace else.

Scott Benner 26:14
I liked it. He's got to go to. Anyway, um, so seriously, I think you you know, I think the way you handled it is amazing. I think that the the larger problem with when you ask people, can you tell me about this? Can you tell me about that? I think everyone that's why I always tell people, when somebody says no, ask them why? Because I think you'll find most of the time, they don't have an answer to why well, your doctor when you say, hey, I'd like it. And sometimes they go No. How come? Well, you don't know enough yet? Why? Then there's never an answer. You just have to figure this out. Those are very vague. In specific statements. You have to figure this out, you have to figure out Pre-Bolus. And you that's somebody that's code for I don't know what to tell you. And or, or everyone's different. And I don't want to tell you something I know works for me, that doesn't work for you. That's just another variation of, you know, oh, that's just diabetes. And I think that the one thing this podcast has done for me and for anybody listening is proven that that that initial statement of timing and amount that's true for everybody.

Alison 27:19
Well, and I agree with that, because I only learned about your podcast, probably in March, I was I was on I finally saw someone post one of your episodes and one of the diabetes groups. And I was like, Okay, let me listen to this. And I remember going for a walk a couple walks, listening and just coming home in tears, because I was like, wow, we are just messing things up. And over Easter and never having my husband I'm like, okay, we're gonna listen to a couple of the first ones we listened to were a date with someone from Dexcom about the G six that was coming out. And so what about Omni pod that was about the dash. And that those convinced my husband, he turned around, he was like, Okay,

Unknown Speaker 27:52
what are we going to do?

Alison 27:53
So then I reached out to you, and you called me. And we talked in from, I think it was like, early April. From that point on my husband. We're like, okay, we're throwing everything we're doing out the window. And we're gonna start over and we're gonna really figure this out. And it has been now an amazing seven months.

Scott Benner 28:08
Oh, my God, this is so embarrassing. I remember the conversation with you just now that you said it, but not prior to us starting to talk. I'm sorry. I just I just had a whole wash. I completely remember talking to you back then. And I and it was the time of year because I was outside talking was so nice out and like, oh my god. Yeah. And you and you were super enthusiastic at the time. And I talked, I must have had a ton of free time because I went on at length. You're delightful. Thank you. And I know I did. And I remember when you hung up the phone thinking these people are going to do okay, so I had a drumroll here. I would do it. But I don't have one. So how did it go?

Alison 28:50
It was okay. So April was rough. Like I was in tears a lot because I just I feel like, you know, I've worked in this place where like, why can't we just get this and we would try things and he would go super high or super low and the school was really fighting us because he was only on g4. So they were like okay, I'm sorry, he's not FDA approved to do it himself. So every time you want to do something, you either have to go to the school or we're going to have to go get him and he was still missing school. And we were like this is what we're trying to avoid. Like we're fighting to avoid this and I remember it That was one thing you even I even talked about was like how did the administration and what to do and so we struggled through April and we and even It was interesting like even his first day one seemed like after like even a month you're like wow, okay, there's a difference.

Scott Benner 29:39
And then you could see the difference in the first month even though it felt like a struggle.

Alison 29:43
Yeah, because it's a one see went from like 6.4 and January down 5.9

Scott Benner 29:48
Okay, so what I would say to anybody By the way, those are great numbers to begin with but but I what I would say to anybody is that just the same thing again, I said to rose last night I was like when you first start this this is starting over like things aren't Make sense, unlike you just have to stick these basic tenants until they start making sense to you. And, and I do get worried sometimes that people might bail a little early on it. But for the most part, I think that you see Enough, enough improvement in that early going that it makes the rough part rough and it is my assumption I hope people believe me, when when, when they when I say this is that I have no idea how it went for you after you and I talked and we're gonna find out over this next 30 minutes. You know, most old people will think that the first cliffhanger in television was on Dallas with the who shot jr thing but was actually the year before on soap. But this is my own little cliffhanger right here. I'm gonna make it simple for you. Go to my Omni pod.com Ford slash juice box to get started today. With the world's only tubeless insulin pump. It's the insulin pump that Arden has been using since she was four years old. Every day, she's gonna be 15 this summer, Arden's agency has been between five two and six two for five years on the on the bottom, two percents on top of these things alone. Plus, my heartfelt endorsement should really be enough for you to try at least the free demo of the Omni pod. I mean, there's nothing for you to do. No money changes hands, you have not made a promise to continue. When you do this, you just go to the link, which you can find, of course at Juicebox podcast.com. Or in the links of the podcast player that you're listening to right now in the show notes there. That's going to take you to my omnipod.com forward slash juice box. And you're going to get yourself a pod experience kit, a peck on the pod is going to be thrilled to send you an absolutely free, no obligation demo of their product that you can actually try on and wear. And here's what's gonna happen when you do, you're gonna put it on, you're gonna forget it's on, because it's freaking amazing. And then you're gonna call on the five back up and say, Yo, I really would like to try using the omnify Can you help me get started. And they're gonna say, of course, that's gonna be that. I mean, no cliffhanger here. You're gonna enjoy it. And the rest of this ad is the fault of the person that emailed me and said, You should sing more. Get yourself and I'm the pod it's a tube was insulin pump. The god I love it by omnipod.com forward slash the juice bar. Don't just blame the person that email. I didn't want to do it. My assumption is that first time is rough, you start seeing a little bit of improvement gives you a little bit of hope you keep then you start honing things. And it gets easier and easier to the point where I hate I hate to say it like so like it's trite, but diabetes takes up a very small part of my day. And and I don't spend a lot of time with it. You know, Arden has been in a really weird place in the last few months where she's growing and and it's you know, it's been as difficult I told our endo the other day, it This has been as difficult a three month period, as I've ever experienced since I figured out all this stuff. And still hurry once it was five sec.

Unknown Speaker 32:57
That's amazing.

Scott Benner 33:00
All I did was diabetes just got more aggressive with us and I just got more aggressive back with it. There were days where she had 50% increases in her basal rate all day. Last week, Arden had pancakes. So even in the middle of me knowing that she has been using more insulin than you know than normal. I don't relent. She said, Can I have pancakes got a head cold? She wants pancakes. Her blood sugar's really rough. And I was like, Yeah, go ahead. I'll tell you what those pancakes which I think should have taken about 12 or 13 units of insulin took 23 units. Oh my goodness, it was insane. And I just kept going and kept going and pushing and pushing and pushing. I stayed to what I knew would work even though it seemed insane while I was doing it. So anyway, I'm sorry. So after that first one, you saw that a one C and how to go.

Alison 33:49
And you know it like I said it was it was okay. But I mean we were so frustrated with her and my husband's like call handle pain fly him out here because it was like, definitely like, where do we say wrong? If we show you our numbers, you'll get it. And we're like, No, okay, we

Unknown Speaker 34:01
want to get this. Yeah,

Alison 34:04
yeah, yeah, we need to get this you know, it was it was a little hard with some resistance from the school. Our endo. We also started around that time when we were telling him like we're redoing everything and he was cautiously optimistic. He's like, let's he goes on. He goes just you've got to get the timing down. You've got to get because he Johnny was hyper aware for a very long time and he's like, you got to get those lows out of there.

Unknown Speaker 34:25
He just

Alison 34:28
he kick it down to the 40s or 50s that's low. Yeah, yeah. And there's too much insulin and he has you know you in oftentimes he will be functioning just fine at 40.

Unknown Speaker 34:39
Um,

Alison 34:40
so we're like okay, but may start to be the turnaround. And he no longer because we were keeping things stable. He didn't feel gross. He didn't have headaches, he didn't have stomach aches. I didn't have to pick him up early from school. Um, we and it was it was actually it was good timing that we had done all this because as we got through the middle of May something was kind of Went on changing with him. And we were starting to see the effects of adrenaline, okay, but we didn't understand it because suddenly, he was getting like his blood sugar was going up with baseball playoffs, and his blood sugar was going off with presentations at school. And, you know, we learned like we thought they were, we thought we were doing something wrong, and we would give a whole bunch of insulin. And then as soon as the nerves were gone, he crashed. So but we were like, okay, since we had stability, more stability going into that, we then better understood things. So at least now, we had, you know, we had better trend lines, he was feeling better. Um, you know, we I pushed as soon as I knew that the G six was coming out, I was pushing for it, because the school was like, You can't eat because we wanted him to treat take care of himself come third grade, and they're like, unless he's on the G six and your doctor signs off. We're not going to let him

Scott Benner 35:47
really have what so you were on the floor at that point? Yeah. And what was the what was their basis for that? Was that your how your 504 plan was worded? You said earlier, so

Alison 35:59
the G the G four was not FDA approved for dosing off of

Unknown Speaker 36:03
O and B and your school knew that?

Unknown Speaker 36:05
Yeah. Oh, yeah. Really? Yes.

Scott Benner 36:09
I don't know too much. that's a that's a something of, I have to ring Arden's phone and try to get her she's killing me by not answering her text messages right now. I texted, I was like, Hello, hello. Now it's a what now now all of a sudden she hears it. Bolus, excuse me. Point. Six. So funny. So when I talked about kind of just bumping and nudging and the timing of it, right? So Arden's blood sugar's 140 right now. But when I started trying to text her a half an hour ago, and she didn't answer me, she was 122. And I've never gotten a diagonal arrow. The arrow is not up. It's just it's this drift up. Yeah. And so I just needed a little more bumped to get rid of it. And the timing, it's messed up. Now, if she listened, it's not her fault. I'm not angry. But had she had she said, Hey, what's up half an hour ago, I would have used point four instead of point six, so slightly less insulin. And this 140 never would have happened. And she shows how much the timing means, you know,

Alison 37:11
oh, yeah. Well, I'm dealing with you. We had a Johnny had a presentation this morning. And he was in like the 80s. And so I had him have a little sugar. And then as soon as it was done, and when we started our call just now, he was like 160. And I've been fighting 160 for over an hour. And he's down to 147. But it's like,

Scott Benner 37:28
should you have left the ad alone? Do you think?

Unknown Speaker 37:30
Probably?

Scott Benner 37:31
What What made you do it? You just didn't want him to get low while I was doing something at school in front of kids?

Alison 37:35
Yes. Yes. I also I actually didn't anticipate him growing up because of adrenaline because he had been nervous at breakfast. I also, they don't have snack until 10. And he would not have stayed at 80 for two hours. You don't think I just was experienced with him?

Scott Benner 37:52
Yeah, yeah. Even with even with giving the presentation, you don't think that might have helped a little bit?

Alison 37:57
No, because the presentation was over by 815. It was like he was so. So in we've been having this is one of the things like we've been having some challenge with this pod. And it's hard to know, is it the pod? Is it the site,

Scott Benner 38:08
it's always it's just it's the one thing and I think I've been saying this a lot lately again, but where are all of our technology lacks is still the tubing, the canula. And in every pop, not just one of the other i'm not i wouldn't point to one of them that technology that that material is it's just not perfected yet. And your body sees it as a foreign object and it begins to attack it the minute it goes and it sends white blood cells to that site, there's infection, there's like, you know, like, not infection, like oh my god, pus oozing and dying, but like, you know, your body sees that as Hey, something stuck in my skin, and all the things that come with that, when they can design a material that that I mean, I don't know if they ever will be able to but the problem is that no one puts any effort into and Aaron Kowalski was on a year ago from the jdrf. And he said, he really thinks that's one of the very underserved parts of technologies that we're not studying the calcula material enough

Unknown Speaker 39:03
interesting. So

Alison 39:05
well, it's always like we have that we sought to beat is that, you know, we've also been having, you know, cuz all over the diabetes reforms are about you know, the problems we were having with the G sixes. And it's like, we either have an amazing g six, or we have a bad g six. Is it the site or is it the sensor?

Scott Benner 39:19
That's so funny. So we've been using it for a good long while now. Right from the the limited marker, at least rollout which I think was in June 2018. Okay, and now I'm June, July, August. I mean, we're six months later. And I think I haven't had one issue that that I've heard anybody say, and I always try to think of it like this, like I know, it's the forums and it's a concentrated place where people with diabetes are but people don't generally get online to say great stuff. You know, like like so they're there they have so once you see a couple people say, Oh my god, this is the problem even think about on the pot for a second. I don't know how many users they have, but like, you know, it's hundreds of thousands Dozens of people using the Omni pod. If you see five people online saying I'm having a real problem, you think to yourself, oh my god, there's a real problem. I saw five people talking about it. But the truth of the matter is, is statistically, if 10,000 people were having a problem, it wouldn't be a lot of people it would be to them. But it wouldn't be overall, it's such a weird thing to try to figure out. Well, you

Alison 40:19
and I were kind of restarted in like mid to late June, we're about four months into the G six and I mean, we had we had a they had to replace this first transmitter, they had it they replace it within 10 days, it was just a bad transmitter. Okay. Um, but you know, we've had in for the over the summer was crazy, because I would expect the summer were so much going on in heat we would have had problems with with sensors. And it's only been since he's been back in school that we've had some quirks, like, I think one I think the way it must have just been swaying in his body. Like, I don't think it stayed in a good spot. Because it was like, we had to pull it after four days. And the readings were just so inaccurate.

Scott Benner 40:55
So it's interesting, because you just said something that I'm fairly certain is, is impossible, that it was like swaying in his body. Like I think sometimes we all just, I'm a big fan of something doesn't work. Just keep going, like, take it off, put another one on and keep going. Like I don't, I guess I don't spend a lot of time wondering what happened because I think the variables are so incredibly many that it would just it's silly, like I finally figured out one problem with Arden right? Like there was this time I kept thinking, while Arden does her homework, her blood sugar gets low. And I was like, that doesn't make any sense. And so I finally realized that Arden was doing her homework on this bench where she would curl up in a ball. And so she kind of pulled her knees up, and or where her scent where her sensor was for her g six, it kind of mimicked a compression low even though she wasn't sitting on it. And so one day, I was just like, Can you put your knees down for a second? And that was interesting. And so so it wasn't in that situation. The sensor was fine. Everything was fine. It was reporting correctly. It just was displacing her interstitial fluid. And and I just like that's what I when you said it's been since he's at school, I'm like, I wonder if he's like, like, and that's as insane as that sounds. I wonder if something's changed about that. Like is he sitting up against something as a body position? Does his his his bookbag blocking his trans like, I never know. The people that real good foods have been real busy adding more options for you. their newest addition the breakfast sandwich comes in bacon or sausage. Of course, you can always get the five inch chicken crust pizzas that come in personal supreme pepperoni and three cheese. There's the seven inch chicken crust pizzas, three cheese supreme and pepperoni again. enchiladas cheese, pork, chicken and beef. Would you like a mixed case of enchiladas? You can do that too. Now what about the poppers? Bacon and cheddar, jalapeno and white cheddar. artichoke and cheese pepperoni and mozzarella. Would you like it mixed case a poppers you can get that to real good poppers mixed case for pepperoni and for jalapeno that's eight poppers. Eight pops. Now of course the cauliflower crust pizza is everyone's favorite. Comes in cauliflower, vegetable, pepperoni, Margarita, and cheese. And you guessed it a mixed case. Looks like there's some pepperoni snack bites here I haven't seen before that must be new. So if you're looking for so if you're looking for high protein, low carbohydrate, so if you're looking for high protein, low carb options, real good foods is a really good place to start. All you got to do is go to real good foods calm. All you have to do is go to real good foods calm and at checkout, use the offer code juice box to save 20% That's amazing. If you ordered a million dollars worth of real good foods. Watch this. Okay, Siri, what's 20% of a million? It's 200,000 Oh, my God, you could save $200,000 on your next order real good foods calm by using the offer code juice box. For a more normal perspective, you'd save $20 off of 100

Unknown Speaker 44:09
Yeah, no, I

Alison 44:10
will text him like we at least now that you know he does. He's um, we had spent the summer using summer camps to have a lot of data to show his endocrinologist that he could self care. And, and since third grade, like he's only seen the nurse once and it was because I had to replace this pod. So he does everything in the classroom. So also, you'll see that like I'll see like a real funky like, drop and I'll be like, I'll text him and he has an Apple Watch and I'll be like, Okay,

Unknown Speaker 44:32
what did you just do?

Alison 44:34
Did you move Are you laying on the beanbag chairs? Because exactly that kind of thing. I'm like is typically it this G sucks. It's like you know like right now, if I was still on the g4 I would be like a she fours broken. It's too steady. But I know the G six. This number is accurate. We're just having he's either got scar tissue. Something's going on. I know I have to do a pod change tonight. I really want to try and get this one to last until tonight.

Unknown Speaker 45:00
We'll make it work.

Scott Benner 45:00
Yeah, no, I listen. I think that I think the technology is stunning. I think it gets better and better every time. But I think you still have to remember you're taking something made of plastic and metal and taping it to yourself. And then and then it sticks under your skin. And it's not the movies. You know what I mean? Like, it's just this, this stuff works incredibly well, as well as it can work with the technology that they have right now.

Unknown Speaker 45:25
I'm grateful for Oh, I

Scott Benner 45:26
don't think you I don't think you aren't. I just it's, it's tough because I do like having honest conversation like this at the same time. What I would want somebody to believe when this is over is that nothing you have said would ever have stopped me from using the stuff that I use, like it's such right over and above such an amazing accomplishment in you know, in people's lives. It's just me, you've you go back and listen to these other episodes with older people. You know, there are people boiling their own urine to test their blood sugar. There's people you know, getting a drop of blood on their finger the size of their finger to test their blood sugar. There's, you know, the people who used to use meters that probably didn't really even work that well.

Alison 46:10
Yeah, my husband stepmother has type one. And she was diagnosed in 11. And she's in her 60s now. And she has said, Now she's talking to get a dexcom because she's she's always done everything with injections. She mostly takes Lantus. She's like, but she goes, I see the what is done for Johnny. And I want that for me.

Scott Benner 46:26
It's amazing. Yeah, no, it's it's really amazing. So anyway, I just think there's a there's a line between understanding the limitations of the technology and understanding those limitations don't mean that it's not absolutely the most amazing thing in the world.

Alison 46:42
I mean, don't run with these, these are such little quirks. And when their quirks we just kind of go like I agree with you, like we just kind of we pull it and go let's get on to a new one, because we want to get back to keeping him healthy. And like I said, I mean, the last seven months have just been a whole change for us. It's a nice,

Scott Benner 46:58
it's very, it's who you are. It's funny when because when you're talking, you know about things not going well and everything if you will give me if you'll help me before the before the pump, in the CGM, anything when you said things weren't going well, you already kind of know what you were doing. What was your agency? And what was the range of agency back then

Alison 47:15
we were typically keeping around. It was about 6.8. But I think the problem was is that the high highs and the low lows were offsetting each other.

Scott Benner 47:22
Okay. Okay. So that's what I want to understand because your numbers not awkwardly high. And yet you were so so what was happening is he was riding high a lot and then riding low a lot. And then that average was getting thrown off in the air one. Yeah, I'd

Alison 47:35
like to be the waitress and we would throw we would throw you know, we would throw stuff you know, high would get going and our high alarm. I mean, I my high alarm at night wasn't we set it to 20. Which, and because I was like, oh, as long as he's 180 or heal at night. That's perfect. It was interesting that a year ago, he was out of 6.8. And I changed. I decided on my own I was like, yeah, let me change my high alarm at night to 180 and be in the three months after that he dropped down to 6.4.

Unknown Speaker 48:01
Yeah, so so

Alison 48:02
I think like it was kind of like we It was one of our first signs of like, maybe that was it. But we couldn't, it was hard to catch. We just you know, we would you know we would do our we were very devoutly to the to the carb county and we weren't too much into like we knew french fries had a kick later. Other feuds hard to say. But I think we would overcorrect. So then he'd get low. And then you'd give the pilot give a little too much to counter the low just bounced up

Scott Benner 48:29
and down from there. Yeah, that's why the roller coaster episode made you upset. Because you realize, Oh, that's what we're doing.

Unknown Speaker 48:35
Yeah, exactly. But it also made me realize I had to get off it. Right.

Scott Benner 48:39
Right. No, I it's I think listening to you is really interesting because it just because it it's hard to put into words really, but I'm really enjoying listening to you explain how you were feeling and what was going on? Because you were so close. Like we know when you create a low by over bolusing you weren't you probably weren't off by that much. You know, like when I talk about Pre-Bolus thing, you know, usually talk about like tug of war, right? Like trying to maintain this like tug of war that nobody wins. And I somebody asked me the other day about, I don't understand. I was explaining to them like I like to see Arden's blood sugar, lower and and coming down as the food starts working. Like I really like the insulin to be sort of in the power position when when the struggle starts. And I found myself explaining like a timeline. I'm like, imagine this long timeline, and I stood up, and I was like, so I'm gonna walk along the timeline, and I'm time moving. And I took one hand and I was like, This is the insulin that took the other hand, this is the carbs. And I just started pulling down with the insulin. And I was like, Nah, see, now see right here now. Now the carbs are going to pull up and I'm like kind of doing that struggle with my hands. But as I'm struggling and they're going back and forth, fighting with each other, I'm walking down the timeline I was like, and then you get to the end and it just stops foods out of your system, the insolence out of your system. And the struggle has been happening. Hopefully it whatever blood sugar you started at, you know, when that struggle started at 70, then you might stay around there for start around 90, you might stay around there. If the insulin doesn't have enough power and the food gets out of hand, that's a spike. And if the insulin gets too far ahead of the food, that's a low and like, and I was doing all this stuff, and I was like, God, this is visual, I didn't realize how visual this could be. You know, like, it really is. And I'm picturing it as you're describing it. It's just, it's crazy that you were so you would see a spike, and how long would that spike last?

Alison 50:32
Oh, you know, at least we had learned going into this that it would take two hours, even a one ad takes two hours to come down. And it was like you and speaking to you about the tug of war is where I could visually see it. That's how you say I would send him to school with a knot in my stomach, because I had no idea where he would be that day. Okay, just a horrible and even that first month when we had thrown everything out and started over every day, he went to school, just a knot in my stomach, and I would just sit there and I would so so watch his numbers, and be like, Okay, can we just get to snack today where you don't get a low? Um, because again, he would have to miss class to go to the health office to deal with anything. Um, and you know, we were Pre-Bolus it by that point, at least at breakfast, but the the school was not set up to have an Pre-Bolus for lunch.

Scott Benner 51:27
Okay. Okay, and was the Pre-Bolus at breakfast working.

Alison 51:31
So we, we learned the hard way, you know, when we got the dex comm we had it. We had an issue when he was finishing pre k before he had the dexcom he had he ate breakfast at that time he burnt out people assumed he went to class. The school calls me because a substitute came in and seen as medical orders and insisted he got fingerprinted before PE and they call me they're like in a panic cuz they're like he's 450. So I raced over to the school, give him some insulin, not knowing this whole tug of war thing. And an hour and 20 minutes later, his teacher carried him into the health office almost passed out. And his blood sugar was 38. Yeah, yeah, that's so we got the Dexcom and we learned every day after breakfast he was going up to 450 so we started

Unknown Speaker 52:15
with shots.

Alison 52:16
Pre-Bolus early, breaking up his breakfast shot, some before the breakfast and some after what was he eating at breakfast? We stay away from cereal. So but he loves I love to bake. So muffins and pancakes and waffles and bagels.

Scott Benner 52:35
You kind of thought back then prior to having a CGM you thought okay, I've put in, I've counted the carbs. I've put in the insulin, I Pre-Bolus that a little bit that means that I have to pre balls or I'll never, you know, do anything. And you were like, Okay, this must be okay. And then finally someone says, hey, look, isn't funny. Like a sub just says, Look, I'm not gonna let this kid go to gym unless he does a finger prick. Because that's in the orders. You find out he's 450 did it just were you shocked by that? Yeah, I

Alison 53:04
mean, I'm fortunate I work from home and I am five, like five seconds from the school. So I you know, I've raced over there in a complete panic. I'm like, 450 Oh, my God. You know, let me give you insulin, we got to get you down. And then you know, I'm an hour, two minutes later, I'm at the gym, and I get a call from like the district nurse who says, Okay, I get attacked, and she's like, he's really low. And that's all the tech says, yeah. And I call and I'm like, What do you mean? And she's like, well, he's 30. I'm like,

Unknown Speaker 53:30
What do you mean? He's

Alison 53:31
38? Like, how did that happen? So that was like our final point. We're like, Alright, let's get this deck calm.

Unknown Speaker 53:37
We can you know, we've

Alison 53:37
gone a year without it. We don't know how often this is happening.

Scott Benner 53:41
Let me jump in and say that I think a lot of people might be inclined to think Well, yeah, he went to gym and that's why his blood sugar went down. His blood sugar didn't go down that far. Because the gym, his blood sugar went down because you gave him more insulin again.

Alison 53:52
Exactly. Well, and the problem was that he probably was on his way down, but we can see it. And then what I gave him just plummeted more. Okay,

Scott Benner 54:00
now fast forward to today. You have you have different technology have a different mindset. How does that how does that breakfast go now?

Alison 54:08
So now we do a Pre-Bolus 20 minutes ahead, we give him 85% at 20 minutes, and then he gets the rest over an hour. Okay. And he can eat, we still have to try to stay away from cereals and, and just in general and he eats. Otherwise, whatever else he wants. And he peaks at 130 maybe 140. We'll change the meal. He has PE at 830 in the morning, two days a week. So those days we'll do more of a eggs bacon kind of thing. Okay, to give them the extra fat because they play hard at PE

Scott Benner 54:41
Yeah. Yeah. That's amazing. I mean, that's in such a short amount of time you went from someone's carrying your half lifeless kid to the office to being able to you know properly bolus for a waffle or a pancake or something like that and send your kid off to school and not see a bunch of over 130. That's wrong. I'm not,

Alison 55:00
I don't have the pit in my stomach anymore. And I don't check his numbers. And last, like I have my range now set like at 95 to 130, just so I can catch anything that's about to get out of control. Right. But otherwise, like, I think the other day I didn't hadn't checked my phone for like an hour. And I was surprised.

Scott Benner 55:17
Yeah, I really don't look often at all, I actually look more while I'm recording the podcast because it's on my, I have it on my computer screen so I can kind of see it. And I think sometimes it helps the conversation. So but for most of the day, if Arden's and rate in the range that we choose, I don't spend any time checking on it like that, just that doesn't exist for me.

Alison 55:39
Yeah, and like, and I have mine up right now, because I'm like, he's finally 131. And I want him down more, and I just can't he something's just going on want today. Right?

Scott Benner 55:49
Right. That's really cool. Like, I mean, it was just such a it's such a change, you know, I mean, like you described like confusion and and a loss for what to do. down to like, I can do pancakes now. Like, that's really that's really cool. What What was the what, what do you think the main? Do you think it's the technology? Do you think if you got the technology before you met me, you would have figured it out on your own?

Unknown Speaker 56:17
I feel like

Alison 56:20
I think you helped give us the push. And I think you helped give us bringing the whole thing full circle. The equipment helped. But even you know, by the time I have spoken to you, you're keeping on the pump, eight months, and we still weren't getting it quite right. Yeah, we were still we were doing 10 days old. And you know, we were, I hadn't even read, you know, sugar surfing, I had started to read it. I bought it like two years before what sometime before, but

Unknown Speaker 56:47
it sat on my Kindle.

Alison 56:48
So I was like, whatever this is, I don't know what this is. Um, and we were just, I think all of us, Johnny, myself, my husband, we were just at a point where we're like, okay, we knew we also had to be able to prove to the school that he had to do it on his own. And so something significant had to change to get there.

Scott Benner 57:07
Right, right. It's I find the highs, the highs that you had prior to kind of pulling together and understanding better I find your scarier than a stable. Yeah, like I would like if Arden's a one see for a very long time was in the 80s. But what it just meant was her budget was, you know, around 200 or so all the time. But we didn't have like scary lows, but you were having 450s and, and, and 50s and three hundreds and fit like that. He must have felt like and I don't want to make you upset, obviously. But well, but he felt crappy, like mostly. Yeah,

Alison 57:42
I get I get the calls that it was really bad. It was a first grade because PE was right before, um, they get out early on on Wednesdays here at like 1240. And he had pe 1130. And I'd get a call from the nurse at 12 o'clock. They're like, he has a raging headache. And he feels like he's gonna throw up. Come get it. Yeah, we had to finally pull him from PE on those days and have him sit

Scott Benner 58:02
was bouncing around, right?

Alison 58:03
It was bouncing all over the place. He would you know, and now just I mean, he, he just he lights up. He's like, Mom, I don't miss school. I might, you know, because it also used to be the nurse would call over the intercom the whole class would get interrupted with the phone call that he had to go do something. He doesn't like the attention on it.

Scott Benner 58:22
Yeah. Well, Johnny report to the office. That's exactly sucks. And by the way, the name of this episode, in case you're wondering, I love and so, but But no, I mean, just so many little things that add up to one big thing have changed for you know, it's really I'm just very happy for you.

Alison 58:43
And so and so, you know, for us that like I'm the near tears because I'm so I'm so proud of him. But I mean, you know, he had 5.981 C and APR and he was 5.5 a week ago. That's his doctor called up and he's like, you kind of got it. Like, he's like, I don't know what else to say. You guys, you've just figured it out.

Scott Benner 59:02
You should have said it was when you guys yelled at us. We really that really helped Thanks a lot. Well, you know what isn't an interesting situation. And when you're with them a little longer you maybe we could say to them at some point. I'm happy that you see that we got it. But you realize we got it with literally no help from you whatsoever. And here's what actually helped us. Maybe you could tell other people this

Alison 59:23
well, so and I have until lately like I told him I told him about your podcast, we've started to get a little more involved with jdrf. Around here. We're doing the big walk on Sunday. We told we went to a Dodger game event we told them they hadn't heard about it. Like Um, there's a new family in our community who just got diagnosed last week. I told that family cuz I'm like, go here. Just listen to these, like, just listen to him and listen to the people he's speaking to. You're gonna get something from it. It's cool, man. I

Scott Benner 59:49
appreciate that. And I think it just it's it goes back to the idea of community from the beginning. You just need to find somebody I you know, there's nobody really in our life. You know? I'm not kidding. Personally to anybody who has type one, like nobody that lives near me, you know, or anything like that. So my connection to type one is, is through this podcast, the blog and stuff like that as well. And, and it just, it's incredibly helpful. It helps me. You know, there are times I'm going when I'm gonna go to a jdrf event in Cincinnati this weekend, and I'm bringing a ton of these bold with insulin magnets for people's refrigerators. Now I'm bringing them because people are gonna ask me, How do I get the podcast and I don't want to tell everybody, I'm gonna be like, Here, take this stick of you. But the truth is, I have one stuck to my refrigerator. And it's not there because I need a magnet. It's there because I need to look up and remember to, I have to keep being aggressive. I have to keep doing the things that I know work. You know, I can't get thrown off by you something just being out of the ordinary. Like, I'm telling you that three months ago and Arden's insulin needs just skyrocketed. And I thought I was tempted to question what I was doing for a second. And I just stopped and I was like, No, like, it's not I didn't do something wrong, nothing change. For whatever reason, she needs more insulin, who cares? Why doesn't matter why, let me make sure I give her more insulin. So we upped her basal rates, we upped her, you know, you know how much we give at a meal, I was gonna say insulin to carb ratio, I don't even know our insulin to carb ratio. I'm just that I would, I would, you know, evaluate a meal. And instead of saying eight, I'd go over 11. You know, and people might listen to think well, where did that number come from? And what I'm going to tell you is I tried eight the week before, and then it took three more to bring it down. So 11 Next time, you know, and and I just kept pushing, kept pushing. That was pancakes that I mentioned earlier in the podcast that took 23 units. If she eats those pancakes again next week, it's going to be back to the needs from before. Something she was sick. She's growing there was there was a confluence of things going on at the same time that created this need. But we were still actually able to do it. And

Alison 1:02:01
yeah, good and not like, well, like we're seeing like, that's what we did this week. Like for the last three days. Like Monday through Wednesday. This week. Johnny was just for lunch. He started going up for lunch, he would stay Hi, I was like okay, that's it. I just going to increase his Temp Basal two hours before I'm changing his lunch carbs. And not did it yesterday.

Unknown Speaker 1:02:19
Yeah, that just broke the cycle. I'm just

Scott Benner 1:02:20
gonna tell you that. During this period of time, I saw high blood sugars I haven't seen in years. And I still just kept being aggressive with them and still got a 5681 c without lows. So and I'm talking about like, now all of a sudden, you know, usually when I tell you Arden's blood sugar's high in my mind Arden's blood sugar's high, it's 150 to 170. That, to me is high. And I'm usually like, what did I do there? You know, and I like, let me figure out how to fix it for next time. Over 180 maybe I'll see a spike to 200 once in a while, but I can get it back right away. But I'm talking about blood sugars that went to 202 20 and sat for a while, and, and I was pouring insulin on her and nothing was happening. And so still without Lowe's by being aggressive, a one center sex and no and still no, no restrictions on what shade. So in a moment, when she was growing, and needed that food, I was able to give it to her. When you know, you might think that what might happen is you start going out Well, why don't we just do less carby stuff for during this time and everything that she needed that food she was, she went from what she normally eats to eating more. And I think she needed I think she's growing Arden is at the moment, 14 years old. And five, five and a lot by the time someone hears this, by the way, it'll be six months from now. But But and she weighs I think like 120 pounds 18 months ago, Arden was five one and a half and weighed like 90 pounds.

Alison 1:03:50
Yeah, that's like a meat. That's what we're dealing with Johnny. It's like it was one of the things it was a kind of a good thing he got diagnosed because we had realized that before that he'd only gained about like, gosh, like a pound and a half in between for 18 months. Since then he is now I think they told me he's like, just nice, like four foot 10 and he's like 69 pounds like he's the tallest kid in third grade. He knows it's so scary growth spurts tumor were like stamping it like my husband always say keep people with the insulin. Like, let's just tackle this. Yeah, you can't figure it out. You just got to figure out how to go forward.

Scott Benner 1:04:23
Arden went from the 10th percentile for height to the 75th in a year and a half. Yeah, that's just and she needed that she needed that food. She needed to be able to eat unfettered when she was hungry. Yeah. And and it's just I'm just really grateful to be able to do it for

Alison 1:04:38
you. I feel chilly because we don't have restrictions that so he gets to eat what he wants. Like we went to Walt Disney World this summer and he got to have whatever he wanted because we had more confidence that we were going to prevent the spike.

Scott Benner 1:04:52
I'm glad for you. I really am I listen to harden left, um, Halloween was the other night and a couple of her friends came over and they threw to you know, they put their house Seems on. And they went out like 730. And at 730. She's like, I'm gonna go. And that was the first time I thought, well, what's your blood sugar? And she looked and she's like, it's 80. And I said, Okay, I was like, well do like a Temp Basal decrease for like, 50% for an hour. And she's like, okay, and she laughed, and I remember she was walking out thinking, I should have done that, like a half an hour ago, this isn't going to work, you know, and maybe a half an hour later, I got a little beeping and Arden's like drifting under 70. And I was like, hey, reach into that bag and eat some candy. So and I'm not with her, she's off wandering around with friends. And a couple minutes later, the blood sugar's 260. And I texted her back, I was like, what you eat. And she, I forget what it was, but it was something with chocolate on my Hey, less chocolate, more sugar. And, you know, like, like more straight sugar. I'm like, look for something shiny that looks like you know, plastic like that kind of that kind of sugar. And so she had something else. And her blood sugar kind of like leveled up, but then it hung. And I said, and she texted me and she was I'm thirsty as like, if you're thirsty, just drink the juice shack with you. So she drank or juice or blood sugar when like back up to like, 85. And he she got home and she was 90. And when she got home, she's like, I'm really hungry. And I was like, okay, maybe she's really hungry. But my in my gut, what I think is her blood sugar is gonna try to go back down again, like her hunger is a lot of times a precursor for her for a blood sugar fall. Like she's, you know, and so I was like, Yeah, great. So she like had a salad. She took a whole bunch of stuff together. And she's eating it and eating and eating. I'm like, she's not really taking that many cars. But look how much she's eating. I didn't give her any insulin for what she had. Even though there were some carbs in it. She didn't just have a salad. She had some other stuff too. And was good. It was a great pleasure. It was like 100 by the time she went to bed. And I was impressed. I was like, great, but it was all just timing. Again, at the end here. I want to say that. I haven't said it enough over the episodes. But when I talked about you have to time the insulin, if you there's a way to do the food that way too. You can time the food too. Like there's you know, people used to call it free food. It's like, hey, what can I eat for free, we can't really eat anything for free. But there are moments where you're, you're almost Pre-Bolus the meal, by mistake, like her walk and her trick or treating was a Pre-Bolus to eat. And as long as she didn't take in too many carbs. Had I given her pasta at that moment. Obviously she would have needed, you know, insulin, but she was having a salad with some crotons a little bit of their stuff. And I'm like this stuff is been Pre-Bolus tardy, not that it's free. You know, but the walking and you know, we use some simple sugars to kind of artificially hold her blood sugar up while she was out. I was like, I think she could do this. That is not something I thought I ever would have been able to have before this podcast.

Alison 1:07:44
Oh, Walt Disney World this summer would have made me so nervous if we weren't like this, because I was thinking with all the walkie and the heat. Like he just made it easier and less nervous

Unknown Speaker 1:07:55
to let him eat what he wanted.

Scott Benner 1:07:59
Hey, you got him down. Finally.

Unknown Speaker 1:08:01
Finally, he said that under 95. It is 95. He just did a 27 point drop. So he must have played hard at recess today.

Scott Benner 1:08:09
It's really cool. I just I can't tell you how happy I am for you when or how much I appreciate you coming on the podcast. And speaking about all this. I really do. Appreciate your time. And please thank your husband too, for helping set up with the headphones and stuff earlier.

Alison 1:08:25
Again, but yeah, just thank you for what you're doing. Because like I said, and thank you for taking the time that day to talk to me because I don't think we'd be where we weren't. If I had not been able to actually talk to you.

Scott Benner 1:08:34
I am just sorry that I didn't realize that you were you until halfway into this apology. As you said it, I was like don't bring it up. It makes you sound like an idiot. And and I thought no, let me be honest with you. First of all, thank you very, very much. I genuinely think that people just need help. Like they, it's, it's too difficult to be put into a situation like this with no tools, no ideas, not even a roadmap and to be told by somebody, hey, here's a bag and needles you figure this out. And then we'll let you do better after that. I don't even understand what that means. Like why would you be like putting a four year old four year old in a car and be like drive down the street. And when they crash 10 feet into it opening the door and yelling, you're a terrible driver, you know, like, like, it just can't put me in a situation where I have no ability to succeed. And give me the pressure of the health of my child or myself on top of all that and and just expect anything. So yeah, I don't think I did anything except put things into context for you.

Alison 1:09:36
I think you just you opened her eyes. You got us thinking down the right path. We had to do the work. We had to figure it out. We had to figure out what worked for him. But you just gave us the direction. Sure. Well,

Scott Benner 1:09:49
I was glad to have it to give to you. That's that's really absolutely I thank you so much and thank California for me while you're out there.

Unknown Speaker 1:09:55
I will

Scott Benner 1:09:56
really bump up my download numbers. I appreciate that. Don't forget dance. For diabetes.com for your chance to have a private conversation with me, of course on the pod comm forward slash juice box to get a pod experience kit absolutely free with no obligation sent to your home dexcom.com forward slash juice box so you can tackle waffles and to save 20% on your entire order real good foods comm use the offer code juice box. And please accept my thanks for your support of the sponsors because obviously, they allow the show to stay free and available to you every week. So I thank you for checking them out. And guess what I have come in next week, the next installment of diabetes pro tips with CDE Jenny Smith, get excited. And if you haven't listened to the first six, now is the time to go back. It's a series they connect. You're gonna want to hear them. Sure. You'll see one of them's like, Oh, it's about MDI, I'm not MDI, but they all connect, you need to see them you wouldn't have skipped two episodes a lot back in the 2000s. He would you know, then you wouldn't have known anything, like a monster full of smoke would have come through and you would have been like, What in God's name is that thing? And you know why he didn't know because you skip the MDI episode. Thanks again for listening, guys. Hey, and thanks for the great reviews on iTunes. I'll talk to you soon.

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