#147 Out of the Mouths of Babes

Emily knows something that you should know...

Sixteen year old Emily has had type 1 diabetes since she was twelve and she knows something that we all should understand. 

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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
Thank you for being here on episode 147 of the Juicebox Podcast. The show is brought to you again today by Dexcom and Omni pod on the pod of course the tubeless insulin pump of choice, and Dexcom really the only choice and continuous glucose monitoring. In this episode, I'm going to be speaking with Emily. She's 16 years old and has had Type One Diabetes since she was 12. The conversations fantastic, but at some point, Emily's experience reveals how to avoid the fear of type one diabetes, you have to really just stick with the entire conversation, but she is going to almost by mistake, tell you the secret to not being afraid. There's a lot more that goes into this episode. But that to me was the real central focus of it. It turns out that what's intuitive to a 12 year old is probably the secret to not being afraid. Emily is the master of fear. That could be the title of this episode. Emily is the master of fear, Emily fear master fear Master, Emily,

Unknown Speaker 1:05
dun dun dun,

Scott Benner 1:06
I don't really have an option yet. As for the title, you can see I'm trying but it's not really coming to me. I'll get it. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before being bold with insulin. You do not have to consult a physician before going to Juicebox podcast.com and buying a boat with its own t shirt. Oh, I should call this episode out of the mouths of babes. Did it I came up with the title.

Emily 1:41
Hi. So I'm a obviously I'm a type one diabetic that lives in Toronto, Canada, and I was diagnosed in 2013. I'm 16 years old. I don't know there's

Unknown Speaker 1:55
it's weird to talk about yourself, isn't it? Yeah,

Unknown Speaker 1:58
so odd.

Scott Benner 2:00
Well, what I was gonna say is that so you're so I'll help you tell you who you are. It'll be fun. Okay, so you're 16 right. And you were diagnosed? How long ago?

Unknown Speaker 2:09

2013. Okay.

Scott Benner 2:12
See, you're taking the math for me. I could have done it, but that's fine. And so 12 years old, so you're four years into it?

Unknown Speaker 2:19
Yeah. Okay.

Scott Benner 2:21
And would you consider yourself like a type one diabetes advocate.

Unknown Speaker 2:27
Um,

Emily 2:27
I try to be I'm not sure I set the best example. But you know,

Scott Benner 2:32
but but by that I don't even mean by being an example. I mean, like, Are you out in the public being open about your diabetes?

Unknown Speaker 2:39
Oh, yeah, totally.

Unknown Speaker 2:39
How do you do that? Um,

Emily 2:42
well, I'm usually like, the type of person that doesn't like, try to hide anything. Like if we're out for dinner or something. I'll just like stab myself. Like, right in the middle of like the dinner table or

Scott Benner 2:53
with a syringe or what do you do?

Unknown Speaker 2:56
Oh, I do. I am on injection. So okay.

Scott Benner 3:00
Yeah, I didn't know. You just had the salad fork in the restaurant.

Unknown Speaker 3:03
Like, yeah, yeah, stabbing away yourself.

Scott Benner 3:07
Do you have a CGM? Ah, yes,

Unknown Speaker 3:10
I do. I do have a.com.

Scott Benner 3:11
Okay, so you do Dexcom with MDI, that's really good. That's fun. That's gonna be fun to talk about. So. But what I'm talking about a little more, is this like, I see you like, if you said to me, Emily's on the pod, yes. I'd be like, Oh, isn't that blah, blah, blah from Instagram. So what's your Instagram handle?

Emily 3:30
Um, and so on to live.

Scott Benner 3:33
And so that to me is, that's really interesting. Because when it occurred to me, at some point to be out in the public and talking about living with diabetes. Uh huh. I didn't know what to do. Like, you know, and so it was so long ago that, you know, as I kind of filtered through the internet, I was like, I could start one of these blog things. And I didn't really even know what I was talking about.

Emily 3:57
Yeah, I like it. Because it's a great way to connect with other people and just kind of help people who don't know anything about it to kind of get familiarized and especially they're just diagnosed and feel like such a great way to I don't know, I just because that's what I I initially just searched like diabetes on Instagram. And it's just so nice. Because there's, you know, so many things you can relate to, and yeah,

Scott Benner 4:19
yeah, so wherever people are on on social media, that's where they look. Right? That's like you were on Instagram. Like you were. I don't know how old were you when you first did that?

Emily 4:31
Um, maybe, I don't know. Actually, I think my accounts pretty old. I think I did started like three years ago or something.

Scott Benner 4:37
Okay, so you're like 13 years old on Instagram? Probably, like a double tap and pictures and, and going crazy. Then one day you're like, Hi. I wonder if there's other people here with diabetes? Exactly what and now you have like, what I would consider to be like a pretty strong presence on Instagram. And it's interesting because I just it's like, I don't think of Instagram. That way. Go, I would like to I wish I was of the I was gonna say generation, but I don't think it's a generational thing. I just have the mindset to, to do that, like, and I it's like I thought to make a blog, you know what I mean? And are some people who thought to make a Tumblr and there are some people who thought too, you know, blah blah blah do this and do that and do other go on Facebook and talk about it in Twitter and, and it's just I think Instagram is just an incredibly I don't know that it's an impactful way, I guess because it's such a it's a quick hit. You don't really have to give too much of yourself to appreciate what the person's put up there. Or do um, to interact either. So do you actually, if you have Instagram friends, like people you would consider like friends that you only know through Instagram?

Emily 5:50
Yeah, totally. I have met a few people on influential is like, and not just people who live in the same country as I, which is really nice. And I have like answered questions like some people just like ask me questions and be like, Hey, I have this like, do you know what caused it? Or like, my doctor told me that I have like some people like for some reason their doctors don't explain like really simple things to them. And I'll be like, obviously, I'm not a doctor or anything. But like, diabetes is not something you caused on yourself. Like, but some people yeah, will will message me with like, the weirdest questions others like I've met and I'm friends with now. And that's really nice. Um, but yeah, I prefer it over I was thinking of doing a Tumblr or something like that. But Instagram is just such an like, it's such a popular thing now. And it's like, I feel like it's the most popular. I don't know,

Unknown Speaker 6:39
no, no, I

Scott Benner 6:40
agree with you. It's I, I am forever. slightly disappointed in myself that I can't do. I can't do better. And I always take it as I go. I'm like, Well, I'm not good at this. Like, you know, I'm, I'm in this situation where like, if I put something up on Instagram, my kid and he does incredibly well. For me. That could mean like, I don't know, 150 likes and my kids are like that. So sad. And I

Emily 7:06
know what save. I've got, like so many followers, and I only get so many likes, and I feel like and it's also the the amount of followers I'm getting, I feel like I've hit a peak amount, because now it's just slowly decreasing. But like, that's not what it's about, obviously.

Scott Benner 7:22
Let me ask you this, when you put something on, and I'm gonna go back to that, but when you put some when you put something up on Instagram that you see somebody finds really helpful. Yeah, and and you think, well, I did something today that actually like impacted people? Uh huh. Do you have the next thought? I wish more people would have seen it.

Emily 7:43
Kind of a lot of it also, like, isn't just to help other people, honestly, like some things are just to help myself like, I'll have a question. And I have, I'll have no idea what to do. And I'll put it on there and people will be totally helpful to me. So that's really nice to

Scott Benner 7:57
see. Now did that. Was that your intention in the beginning? Or was that just like a happy benefit that you found?

Emily 8:03
Um, actually, I think it was also a bit of an intention, because I did have some questions. So like, a, like, just, I don't know, questions that I come up with randomly that you can always necessarily find on Google. But no, I think it I guess it, I guess it is a benefit. Because mainly, I just wanted to connect with people and just help other people who are dealing with the same problems as I. So yes,

Scott Benner 8:23
it's really nice, because you've been doing it for a while now, obviously, and people and that's really cool. And it's helping you, which is pretty fantastic. I find the same thing with the podcast, and I say it a lot. But it's it was my intention to do something that would benefit somebody else. And now I think I might be the person benefiting from it the most. So it's really, I didn't intend that, obviously. But it's really strange that it worked out that way. But it makes sense. When you stop and think about it. It's, you've started a two way dialogue. And, and it's beneficial, like, you know, because you have a question you can ask if you have a statement, you can make it if you're like, Wow, look at this bizarre thing that happened, like people can say it. Tell me a little bit about being diagnosed when you were when you were younger? What because that was sort of if I'm not mistaken, I don't want to pry too much because you are 16 we did have to ask your parents permission for you to be on the podcast. But they were Canadian. So they're very, super, super nice about it. And, and but but So were you Mmm hmm. I never considered how to ask you this. When you were dying. You were diagnosed. Were you a lady already? Or not?

Unknown Speaker 9:38
Ah, not really. No. I,

Emily 9:42
I'm kind of an immature kid. So I was just like, I had no idea what was going on. And I'm one of those people that like if something's wrong, I just go like immediately into denial. Like just No, No, I'm fine. Like I broke I broke my arm at school when I was like in grade five and in the morning, and I was in pain and crying but I just The whole day at school and then went home and like, would stream to the hospital because I just was convinced I was fine. Yeah. So like, that's kind of like what happened, it was the end of my end of the year. Right? And I was just like, obviously, like drinking a lot of water and all that. But I was I didn't really think about it ever. And then it was the summertime and everything was okay. But I was still like, I remember I went to the movies. And I went to the bathroom like three times. But I like didn't think about it like you don't you don't necessarily like, I don't know, when your kid stuff just flies by and you don't pay attention. Um, but then what happened was I went away to stay with my grandparents, like four hours away or so by car. So I wasn't with my like, immediate family and everything was fine there. But my grandpa my grandpa had, like pre diabetes or whatever. And my grandma, like when when it's not your parents, sometimes, like people around you. Like, my grandparents noticed that I was drinking a lot of water. Whereas my parents necessarily didn't because they were just,

Unknown Speaker 11:06
I don't know. Like, for 13 years, Emily, they're sick of you. Yeah.

Emily 11:13
Well, they're not gonna pay attention to like the little things that make sense. And then so my grandma was like, one morning, she's checking your sugar. And she's like, here, Can I check yours? So it's like, Yeah, sure. Like, I don't mind. And so she checked it. And I wasn't even. I think it was like nine or something like it wasn't that bad. And compare this comparison to some. Oh, I say I forget but do you know how like, I don't

Scott Benner 11:38
know the conversion. I'm

Unknown Speaker 11:40
yeah, I'm

Scott Benner 11:41
but nine is around. What What do you think?

Unknown Speaker 11:45
I have no idea. That's your problem. Hold on. We've

Scott Benner 11:49
got the internet. And you know what I was always I always wonder. And Alaska, you said check your sugar. How come? You guys don't say check your maple syrup or something like that. All right, hold on a second. All right. Let's Google conversion.

Emily 12:04
Oh, I think there is probably some sort of tart or something like

Scott Benner 12:06
that. Yes, Lee. Okay. Yeah. I got it here. You guys are mm. Oh, well.

Emily 12:15
Yeah, I think so.

Scott Benner 12:19
Ha, I now hold no, I don't wait. I do. Hold on nine is about 165.

Unknown Speaker 12:31
Yeah.

Scott Benner 12:34
how excited I get a good now that when you blurt out a number, you'll just hear my voice in the background say a different number guide.

Emily 12:42
Okay, perfect. That's that's kind of hard, though. When I listen to like your podcasts when I see people post on Instagram. I never really like understand what they're actually saying. Because I'm like,

Scott Benner 12:51
you don't know if they're, if they're, if they're so yeah, they're like, I don't know how to get my blood sugar. Well, listen, I'm looking at the chart, the lower your number, the lower our number. Okay, so when Pete like this is the fourth edition includes blood glucose levels. So if I said my blood sugar is 90, which one actually ardens is right now. That's 5.0 for you.

Unknown Speaker 13:13
Oh, that's nice. Okay,

Scott Benner 13:14
so I'm gonna send you this. Okay. You can put on your Instagram and tell people look, when you're talking to me, please do the conversions for me. So I don't think so. So your grandmother is a doctor, obviously. Or, obviously, you live in some great named place like Saskatchewan tune or something like that. Or

Unknown Speaker 13:35
Ottawa, the capital.

Scott Benner 13:37
It's not that much fun. Whenever you whenever you come upon fun Canadian words, please use them out loud. But, but so your grandmother checks your blood sugar. it's higher than it should be. And she, Oh, okay. Then she acts. She acts like, I can't believe her parents didn't know. I knew those people didn't know.

Emily 13:57
What happened was, um, I was like, I was like, oh, nine like, it's probably fine. And my grandma was like, I don't know, that seems really high to me. And then I went on Google, like, oh, such like, okay, I went on Google and I was like, what's like a like, blood sugar rage cuz in my head. I was like, maybe there's a different blood sugar range for like, for kids than there are for like, you know, people or something people and kids, right? I got

Scott Benner 14:22
really, really might be the title of this episode. I'm not 100% sure, but old.

Emily 14:28
And so like, obviously, like I would do like diabetes Canada or jdrf or whatever it was that came up first. And it showed like I still remember like, there's that thermometer right? And there was like the red at the top the yellow in the middle and the green at the bottom. And so I saw my like, blood sugar's were like in like the red. But I I was still like in denial. Like, I was like, Yeah, I'm fine. Like, I feel fine. Like, anyways, I'm kind of mad at myself for like, not realizing sooner.

Scott Benner 14:56
You shouldn't be No, I mean, that's, you know, I guess You probably were looking right at it and chose to ignore. But, you know, listen to it three times a week, I'll text art. And I'll say, Hey, we have to test here. I'm not sure if I believe the CGM. And and her immediate responses, I feel fine. Yeah. And then I respond Arden, how you feel is not an indication of your blood sugar. We've talked about this, like a million times, it doesn't still stop her from saying it, you know, and think it's just a natural reaction. You don't? It is not people's inclination to imagine something's wrong. And I want to say this, because I think it'll make you feel better about what you did. Imagine living your entire life, under the assumption that everything was going wrong all the time. Oh, that's not how our brains are wired. If we thought like that, you'd never make it through walking across the room, let alone a day. Yeah, you know, like, you have to believe. Like, it has to be sort of burned in your wiring that things are going okay. Like, it's gonna be worried if I go outside a tree is not gonna fall on me. You know, you can't even wonder that once you start turning into a person who's like, God, if I go outside a trail fall on me, then you have a problem. So you were having a very normal reaction to something, I think, well, like for instance, I'm 46. And I still think one day I'm gonna get in great shape.

Unknown Speaker 16:14
That's never gonna

Scott Benner 16:16
do it never gonna happen. But that's not the point. The point is, is that every day I wake up, and I believe the best for myself, and sometimes that's really important, but go ahead, I'm sorry. So you ignore the numbers. And then,

Emily 16:28
um, so then my grandma called my other Grandma, my, my, my mom's side who had diabetes, and was like, like, hey, like, you know, Emily here has got like a high blood sugar, what should I do? So they actually gave her like a help home line, or something of that sort of, and I remember that my grandma like called the liner, I don't even remember what it what it was. But the person who was on the phone was like asking us all these questions and stuff. And then when we told her like, I was drinking a lot of water and peeing a lot, and like, that was my blood sugar. They were like, cold like immediately to the hospital.

Scott Benner 17:08
So in Canada, they have a phone line, like the butterball hotline, but for diabetes.

Emily 17:13
I don't know. I don't know. I guess that's what Well, I mean, that's what it was. But I don't know what the company was or what

Scott Benner 17:20
the butterball hotline is, by the way. Nope. It's butterball is a company that that produces turkeys. And oh, and around Thanksgiving, they put a hotline up that you can call and ask any question you want about cooking it. And it's a very, it's a free service. And I'm just thinking like, Is there like a diabetes hotline that I didn't know about?

Unknown Speaker 17:38
Did you call them that phone? Like,

Scott Benner 17:39
maybe you were talking to Batman like it's right. It's crazy. That you're 16 and everything I say to you, I think you're not gonna understand. But But you listen to the podcast, right? Yeah, so does my first of all, thank you. And and secondly, but so it's stuff do you constantly find references just like going by you are?

Unknown Speaker 18:02
No, I, I'm okay.

Scott Benner 18:04
As corny as I think I am. That's excellent. Good for me. Now you're on the phone with Batman or the butterball hotline, or wherever you are? And yeah, they're like, Hey, you have diabetes? Yeah. And then you go my arms not broken.

Unknown Speaker 18:18
Yeah, like I'm fine.

Emily 18:21
And then, no, it's actually this is kind of interesting, because then we just went to the hospital. And like, they checked us out and everything. And then I only stayed there for like, a couple hours. Like, my doctor spoke to me. And like, I had some nurses that spoke to me, they gave me insulin, and they were literally, like, just take this much every time you eat. Because what was happening was the next day, I was coming back to Toronto, and I was going to be transferred to that hospital. And so like, I didn't, I wasn't in the hospital for that long. I was in there for like half a day. And then I came out and then I like, had dinner and I took my own shot at my grandma's house. And then the next day, I came back home. And I was like, I remember like I was in the car. And I was like Oh mom look at all of this. And I just like open like my diabetes bag. There's all these like gadgets and stuff that like you know, my parents are like, okay, like, What is all this kind of thing? And then I come home and I like our parents order pizza for dinner and I just like pull up my insulin and like just take pizza for pizza but I didn't know like how much to take really cuz Yeah, well

Scott Benner 19:30
you cuz you were 13 and a doctor who in my mind I imagine is Wayne Gretzky gave you a couple of things and and just was like Yeah, like good luck kid. And and you were like, you really go where the puck is going not where it's been. And then you guys are like yeah, right on and you left and so so sorry. It Canada is like America, slightly colder and I'm acting like it's on the moon but it's still That's no fun to imagine.

Unknown Speaker 20:01
Mmm hmm. So are you saying

Scott Benner 20:03
your parents like flat out didn't know when you got home? They were just like, Hey, what's all that stuff? Or your grandmother must have called and said, Hey, I'm taking your daughter to the hospital, right?

Unknown Speaker 20:14
Oh, sorry. Yeah, that will go. Okay. No, that's okay. I

Scott Benner 20:16
just want to make sure she wasn't just like, look what we did with me while we were in when we went to the water. And we went to the movies, and we got her diabetes.

Emily 20:25
I actually my grandma was kind of like, I she was kind of, like, scared to tell my parents, right? Because it's such like a heavy like, fake. Like, well, obviously, the doctors called my parents and told them, but then my grandma, like, didn't tell him what, like, didn't talk to my parents after that for like a day or two. And I was like, Damn, I should probably tell them what's happening now. Just

Scott Benner 20:46
scared to talk to them. Or do you think that she was told she was like, everything will be fine? And or

Unknown Speaker 20:54
no idea

Scott Benner 20:56
that maybe she just didn't want to be the face of the news. Like the person who walked in the room and said, Hey, everybody whose kid doesn't have diabetes, raise your hand. And when your parents are putting their hand up, she's like, not so quick. And you're like, maybe she just didn't work. That's a hard thing to tell somebody. Yeah. You know, I always felt bad for the doctors in the emergency room. I actually remember feeling bad for the guy that told us like in the middle, in the middle of the night at 330. Actually, yesterday was Arden's 11th anniversary of our diagnosis. And we didn't even realize, Wow, we didn't realize until Facebook put up a memory thing. My wife's like, hey, do you notice that they aren't was diagnosed and like, I didn't even think of that. But back then it was 330 in the morning, we were like, exhausted, sitting in this like cold, unpleasant, like, oddly lit room. And I remember this guy coming in, and he looked like he wished he was anywhere but in that room with us. He didn't want to tell us, you know what I mean? And I always

Emily 21:57
always remember that face like,

Scott Benner 21:59
I could absolutely draw him he looks like the the right wing for the Toronto Maple Leafs. And so yeah. He had dark hair. It was a little curly. He was about six feet tall. You know, like, like, he just I remember exactly what he looks like. And he wasn't even the guy who helped us afterwards. He just walked. He was just like the he was the specter of death doctor, he just walked in and was like, hey, oh, yeah, that's type one diabetes. He said her life's never gonna be the same. She's gonna need insulin to stay alive. And it Don't worry, it's gonna be okay. And I was like, Don't worry, it's gonna be okay. Doesn't sound like it goes with any of the other words you just used. But, okay. And But yeah, I can picture him right now. But but maybe your grandmother was just like, didn't want to be attached to it or didn't know how to say it or didn't want to be the one to say it? I don't. I don't know. It's interesting.

Emily 22:52
Yeah, um, yeah, but I like just so grateful that like, obviously she like realizes, like, of course, you know? Yeah. Yeah. Well,

Scott Benner 23:01
she cares about you not like your parents who didn't notice your opinions. But you know what, though, in your parents defense, it's like when you lose weight, or get your haircut and people you live with don't notice. And then you leave

Unknown Speaker 23:12
back? Exactly. Yeah.

Scott Benner 23:16
So now you're 13 in school? You know, is it hard? Like when you get on the dog sled in the morning to go to the building where they teach you on chalkboards? Is it? Like what's it like going to school with diabetes? When you're at the conclusion of this episode of the Juicebox Podcast, I would like you to go into the show notes, and click on the links for Dexcom and Omni pod and check out what they have to offer. Now, you might say, Scott, Why should I do that? The answer is I'm commanding you with my mind. I'm sending telepathic waves through your podcast that, and I'm imploring you to click on the links. Now. That's not actually why. The reason why is this, do you have the pleasure of owning a tubeless insulin pump, you are not going to completely understand what freedom is with Type One Diabetes. I talked about here all the time. But the ability to bump and nudge your blood sugar is so key. I know that some people want to say oh, I don't want to pay that much attention. I don't want to always be bumping and doing that. But do you know that it is so much simpler to put a tiny bit of insulin or make a change to your basal rate on a blood sugar of I don't know 120 diagonal up than it is to ignore that blood sugar until it gets to 200 and then you're suddenly fighting with it. I want your days to be full of just happiness, not fights. I want you to be able to make a small adjustment to your blood sugar in two seconds. That stops it from going up or from going down and not spend hours and hours embroiled in this battle with your blood sugar. I don't want you constantly worrying about your kids. I want things to be quick and simple in and out. Quick Hits. Oh, there's something to do. I did it. 35 seconds later, it's over and you don't have to think about it again. And two Not be tethered to something. I mean, that's just a bonus, honestly. But if you go to my Omni pod.com Ford slash juice box, you fill out the tiniest bit of information, and on the pod would be thrilled to send you a no obligation, absolutely free demo pod that you can hold field touch try on and see what you think.

Emily 25:19
That's, it was kind of like, like I made sure like all my teachers knew I had diabetes, honestly, now, I'm just, I don't, because they don't understand it. And by the time I explained it all to them, it's like, it's kind of overwhelming for them. Sure. So I just tell them that like sometimes to get low blood sugars, and like the fact that I take insulin for low blood sugar won't even like make, like, they're not gonna understand anything. So I just tell them that sometimes to get low blood sugars night to eat something, but like, if I take insulin during class, they're not really like, wait, what are you doing? Cuz I told them I have diabetes. But yeah.

Scott Benner 25:55
Wow, that's interesting. So you could probably be a well functioning heroin addict. And they wouldn't even ask questions. You're like, that girl just introduced yourself once in a while. She said, yeah. So we're good with it. Yeah, exactly. And that's that again, Canada, people are so nice. And then do you have to, um, like, do you have your parents have to put like, like plans in place or like legal documents about your care? Or do you just basically say, this is what I'm doing? And

Emily 26:19
I have none of that. Yeah. Like I had to take my exams this summer. And I was like, actually kind of concerned that like, I could get a low blood sugar or something. So I went to my guidance. And I was like, hey, like, I just want like an extra 20 minutes or something if my blood sugar's go low. But they can even like, they really understand what I was talking about. They legit gave me like two extra hours. I'm like, Oh, my exam.

Scott Benner 26:42
You're gonna be in the Canadian Harvard, or the real Harvard by law? Or? So that's so it's just not as, huh? It's not is like, fussy.

Emily 26:56
or anything, either? I don't know. I keep hearing about that. So we don't have that you've

Unknown Speaker 27:01
never had a school nurse? No, no, no. And so how

Scott Benner 27:04
do you consider your son? And this is something you don't have to talk about? If you don't I tell everybody. You don't have to feel pressured to like, give away your own secrets. But do you have? Do you feel like you're a one C is where you want it to be? Is your blood sugar's during the day? Are you happy with them? Or is it one of those things where sometimes people are like, well, I'm at school, there's nothing I can do about it. Or you find your days ago,

Emily 27:29
as school is actually like my best time for blood sugars, because it's a routine that set so it's like, I wake up, I pretty much like usually have the same thing for breakfast. So you can really get it down. Yep. But then what happens is over the summer, like it's a completely new routine, like I'm not waking up at 8am and waking up at like 10. And by then, like your hormones have already kicked in, or whatever. So it's like a completely different beginning already. So I've had a bit of I've definitely had some harder time controlling it at home in the summertime. But it's cool. It's really not that bad. Yeah. It's the rich,

Scott Benner 28:03
it was. So this is interesting. I just realized that there's this great advice I give to people I talk to. And by the way, it's not really advice, Emily, why is that? Because nothing you hear on the Juicebox Podcast is advice, medical or otherwise, but but it's this thing I say to people, when I talk to them privately, then I realize I've never said on the podcast, but you just made this great point. And I just said it to somebody a few days ago, I gave them kind of like these sort of new tools to try to try to get things under control a little bit. And I said, it's the weekend coming. That's it's great that it's the weekend. And they said, why I said, well, because I want you to do something that's gonna sound ridiculous, and really boring. But on Saturday and Sunday, I want you to make the same exact thing for breakfast, lunch and dinner on both days. And they're like, why? And I'm like, well, because you can take a shot at it right? You can say, Okay, I think it's gonna be this much and it takes this much pre balls. And then you'll find out what happens, you were still high afterwards or not as high as you usually are low or whatever. And then the next day, without any outside interference from food changes, you can make a different decision based on the information from the day before, and then see where it goes. I said if you if you take out the variability of the different foods, it's one less thing to worry about while you're trying to figure out the insulin timing. And I just think that's like, it's the simplest, like advice in the world. But I then tell them the same thing you just said, which is I love it when schools in session because it's so regimented, she gets up at the same time, eats at times, like you know, as active at the same time. It's so easy when you take away some of the variability. So yeah, so you find the same thing then at school is easier than summertime, or something like that. You know, there's one at 12 months there.

Emily 29:54
It's actually quite nice actually this like we've had quite a warm summer

Scott Benner 29:58
or point seven months. See if you use the conversion chart here from 12. Sorry.

Emily 30:04
Um, but no like in Toronto, it doesn't really snow that like it snows, but it doesn't snow, like five feet or whatever. Like it was in Ottawa or something.

Scott Benner 30:14
But one of the real big cities like in the middle of

Unknown Speaker 30:17
a glacier. Yeah, exactly.

Scott Benner 30:20
Okay, so school is pretty, it's pretty easy. But how was it back then when you were 13? You were just like, what did you do? We just like, Hey, I'll take this needle and give myself about this much insulin or how did it?

Emily 30:32
Well, like obviously, when I came back home that summer, like, we when I got transferred to the new hospital the whole time. They kind of took me into like a step by step process, like taught me everything again, from scratch. And then to I did figure out obviously, my like insulin to carb ratios and stuff like that.

Scott Benner 30:54
Yeah. And would you say it's your experience, and for all the people that you see online, who are sort of parents like wringing their hands, like I can't send that kid to school, unless he hasn't been, let's say, as a tank made out of insulin, and there's 16 nurses one on each corner of the hallway. And, and someone's gonna have to be with them constantly. And like, would you say to them, hey, none of that ever happened for me, and I was fine. There's been some talk recently about a new product, and people are calling it a CGM, a continuous glucose monitor, but it is not. It is not a continuous glucose monitor. It's a glucose monitor that you have to hold something to, for it to show you your blood sugar. That doesn't give you an alarm. That doesn't tell you Oh, my God, my blood sugar's falling. It's rising. It's that's, that's not the same thing as the Dexcom. Oh, I'm upset. But I'm gonna calm down for the next combat. continuous glucose monitoring. You listen to this podcast, you understand what it does, you know how important it is? I really shouldn't have to say anything else, I should stop right now just tell you dexcom.com Ford slash juicebox. Go find out more. But I won't, I'll give you a little more. There is a world where your child can be at school, or on a playground or in a park, or at a friend's house or to sleep over where you can see their blood sugar in real time. Going up going down? How fast is this a crazy spike? Do I need insulin? Can I wait a second, all of this information comes from your dexcom continuous glucose monitor. And with that feedback, you can make decisions that directly affect your health and your happiness and just how good your day goes. You know, if I test my blood sugar with a regular meter, I say Oh, it's 80. I don't know if it's 80. It's falling, or it's 80. And it's stable. There's a huge difference. Dexcom tells you you're at a stable, your 80 is actually drifting up your abs drifting down, your ad is falling fast. These decisions that we talked about here every day, they come from the data that comes from the Dexcom. And you can have one too, just by going to dexcom.com Ford slash juice box and finding out more.

Do you remember at the beginning of the podcast where I was talking about how Emily is sort of gonna just magically tell you how not to be afraid. Just listen to this?

Unknown Speaker 33:14
Ah, yeah, not

Emily 33:15
Yeah, it doesn't. Yeah, it's not that bad. What I did what I did do that, like I really like, like, my mom literally bought me like a box of those mini juice boxes. And I put it at like the top of my locker shelf. And so if I didn't have like, if I didn't bring juice with me to school, or if I didn't have something to eat when I was little, I could just go to my locker and I had this huge box of stock juice boxes,

Scott Benner 33:40
and you ever, ever have a bad low at school? Um,

Emily 33:46
yeah, actually, I had? Well, first I want to say that I had a teacher who was really funny. And he would say that every time I was low to ask him for a Mars bar, he just had like a whole bunch of them in his desk. But all the other students would never understand. Like, why was I asking my teacher for a Mars bar, just like randomly during class. And like he wouldn't give them any other students. It was kind of just a joke between like the students and the teacher and stuff. And so that was really nice until my mom told the teacher like, hey, okay, she has juice you don't have to give her a Mars bar. So

Scott Benner 34:20
this teacher with a Mars bar problem who was using your diabetes as a as an excuse to keep a bunch of Mars bars on his desk is what I'm hearing but it's but how you said you had a bad low How long were you unable to help yourself or not? Okay, well,

Emily 34:35
it wasn't more it wasn't as much of a bad low was it was just a bad timing. I was doing a musical for school. And I was just about to go on stage and I had a horrible like, I was getting really low. And so what happened was I didn't have juice on me because you know, I don't know why, but I know do you saw me so I had to like go back to my locker. But they had to like pause the Musical for me.

Unknown Speaker 35:02
My locker. My

Scott Benner 35:06
Hello, Dolly. Oh, everybody, just one second. Exactly. And so it wasn't bad like you weren't incapacitated, it was just really horribly time. So what I'm assuming is now as you're speaking, once this, you know gets released is just a ton of Facebook support groups or parents are shutting down because they're just like, oh, apparently we're worried about a lot of stuff for nothing. I will tell you that. I never, I never do this because I don't want to make people feel badly. But you know, there's a big you know, when school starts again, you see a lot of moms are like, okay, here's the supplies we're sending. And it looks like, it looks like a military drop. Like, you know, I mean, like, there's like giant skids of things wrapped in like, like Saran that's gonna have to parachuted into the people on the front lines, it gets so much stuff. And when we, when Arden starts school back up in a couple of weeks, we take her nurse, this is so funny, we take her a brick of juice boxes. Yeah, an omni pod, just one. And I give her a ketone meter because that I actually want to be in the building. Right? That's a thing. Yes, I have a meter a blood ketone meter, it's so great. You just you just be I don't know, it's just test your blood sugar accepted. Your ketones is that I'll I'll put a link in the show notes too. And I'll send it to you so you can see what it is. But so it's these three things. And we bring them in. And I'm like, I only do it to make the nurse feel better. And then at the end of the year, I go back, we throw out the juice boxes, and I take the pot back and I give her like give her glucagon too, because that makes her feel good. And I'm like, here's a you know, here's a glucagon and a pump. Now that I put the extra pump there in case Arden ever needs to change, and I bring a pump that somehow fails. And so we have an extra one. But in my heart, I don't really want to give her anything. Oh, as Arden since Arden is going to go into eighth grade this year. She's 13. And she has not been to the nurse for diabetes since second grade. Wow. Yeah. So I don't. So when I see everybody with their stuff.

Unknown Speaker 37:19
Excuse me, I

Scott Benner 37:19
don't want to make them feel badly. So I'm not like, Hey, here's our stuff to go this year. It's a glucose thing. But at the same time, I'm like, Wow, you've sent enough stuff into keep seven kids with diabetes. Like, like if they had a problem every day. And and I do know, but I understand the anxiety. Yeah, because I had it. I had it too. But your parents didn't have it? Did they not know enough about it to be anxious? Or were they just super Zen people? Or?

Emily 37:48
No, no, actually, I think I want to say I think it's kind of bold, like cuz I yeah, I think it's kind of both but um, yeah, I just have juice boxes in my locker. And what's nice is there actually, there's actually like two or three other diabetic students in my school. And one of them was in my grade. So like, obviously, I keep spare needles, test strips meter on my Walker. Yeah. But if I ever needed anything, like there was one time last year, I had, I didn't have enough infant pine needles, because I just want to rush in the morning. And I didn't bring an extra one with me. Um, and I was like, frantically trying to find him before lunch. But I could just like get an extra needle. But that's really nice that there are students in the school who have diabetes, so we just kind of like,

Scott Benner 38:36
do you have your own needle, give your own needle share program? And? Well, I just think if what you're saying is, is wonderful, and it's fascinating at the same time, and I think there are probably and I want to talk to the people right now who are like, God, am I overreacting? Probably not, but probably a little bit and just know that right now in the back of Emily's head. She's thinking to my parents not care about me. And why? Why are they not sending a bunch of stuff to school with me? They're just like, go get them killer. Go where the pucks going, and you're like, right on, and then that's the end of it. But that's really it's really cool, though. So at home, did they not have very much? Like, how much interaction did you do your parents have with your diabetes?

Emily 39:24
Um, well, initially, it was like, my mom was helping me like every dose and stuff like that was like, literally like the first week or like two month I was diagnosed. But then like, after that, I was like, Okay, this isn't that bad. And so I kind of you know, and then when you start have to adjusting insulin doses and stuff, I kind of got it. I think I jumped ahead of her a little bit, and just kind of started doing it on my own and then and I don't know, and there's just a lot to keep up with. If you're not someone who has it. It's a lot. It's hard to understand every little thing about it. And it's like I kind of already did. So I'd have to explain things to her and she it kind of looked like like I was taking care of it myself. So she kind of let off a little bit and

Scott Benner 40:04
so while you were doing this and I do want to if you don't want to tell me you don't have to but while you're doing all this like how was your anyone say?

Emily 40:10
Oh, it was actually really good my a once you right now is seven which is the highest it's ever been. It was like sitting in like the six or something. I think my agency went up this time around because of exams I was just like stressed like crazy this year for like, a couple weeks so

Scott Benner 40:27
and so. Okay, so let's everybody take a deep breath here because well no, no, no I'm, I'm thinking about the people are listening are like how is a 16 year old doing so much better at this than I am? Because I'm starting to hate you a little bit as you're talking. And and

Unknown Speaker 40:43
no, I have no idea what I'm doing. She's just like, and it's working.

Emily 40:51
Well, I think I was honeymooning for such a long time to okay, but I literally like have like a cinnamon bond and like juice and like take like three units of insulin and be fine. Like that's when I was like the first year or two I was diagnosed like, I'm like my I go back to see my doctor and he'd be like, yep, you're still honeymooning. So I that really helped. Like I was planning but now you have

Scott Benner 41:13
you been Dexcom CGM. Now how long have you had one?

Emily 41:16
Ah, actually, like less than six months?

Scott Benner 41:18
I think. Okay. And in Canada, you can't just buy them the way we get them. Like, you have to go to Tim Hortons or something. Right?

Emily 41:25
No, like, no, the only difference is there's just no insurance.

Scott Benner 41:28
Okay, so you have to pay tax. Wow. That's crazy. And yeah. How many loons is that? I'm just kidding.

Emily 41:37
I don't know. I don't know the exact price right now.

Scott Benner 41:41
But it's expensive. Yeah, no. Okay. So you've had it for six months. So let me Let's know, we've got a good feeling for that. You're just like being here. Some insol have a cinnamon bun. No, I don't have a needle. I'll ask a friend at school. It's all good.

Emily 41:54
And and so I'm sorry, sorry. I'll have a nymo bar away. And then nymo bar.

Scott Benner 41:59
Okay, that's not something we know about.

Unknown Speaker 42:02
dessert.

Unknown Speaker 42:02
So there you go.

Scott Benner 42:04
Do you know what a maple long john is? No. interest, I'll

Unknown Speaker 42:08
have a jug of maple

Scott Benner 42:09
syrup. Just a jug of it. Just say I'm low. I'm gonna lick this tree. So. So you now you've had a dexcom for six months. So now you can really see. You can see what's happening. It's not just like, Hey, I ate something. I gave myself insulin. And however many hours later when I tested again, my blood sugar was kind of where I wanted it to be. I'm good. So when you first got it, what's the first thing that struck you about your management that because you must have something must have happened that you thought, wow, I'm doing great or Geez, I have to change this?

Emily 42:40
Um, no, I think my insulin sensitivity was just really good. And like because I was honeymooning, like, initially, it was just super easy. Like, I was like people struggling with diabetes and high blood sugars. What are you talking about?

Scott Benner 42:52
Yeah, you're doing, obviously just

Emily 42:56
do it. And then no, after I kind of got out of the honeymoon period, I was obviously still dealing with it on my like, mostly on my own, which I was like, which is fine. I like I like doing, like being independent with it. And sure. But then it started to get kind of tricky. And then we switched to an insulin pump. And that was really nice. That kind of calmed down a little bit. Because, you know, if you if you didn't take the full amount of insulin for a meal, and you have to like keep correcting or adding or whatever having 10s was really hard for that,

Scott Benner 43:26
right? Because you just have to keep sticking yourself. So So yeah, we have a pump now now.

Emily 43:31
Now I don't have a pump anymore. What happened?

Unknown Speaker 43:34
Well,

Emily 43:36
my reason for that is that I got into running and jogging or whatever, just to kind of pull down those blood sugars. And it's just a really nice, like, stress relieving thing. And I really enjoy it and having an insulin pump on me was really difficult. When you're running. It's like every thought like you feel your insulin pump like on your hip. Right. So

Scott Benner 43:54
what kind of pump are you using?

Emily 43:56
I was using an animus. I honestly don't even remember the name. I haven't looked at my pump in like a year. So

Scott Benner 44:03
this is interesting. So you had a pump that you enjoyed, because it was keeping you from having to give yourself as many injections as you want as you needed to to be kind of aggressive with your blood sugar. But because of running, you stop using it went back to pens.

Emily 44:16
Yeah, okay. And I've, I've actually had, like, I haven't minded using pens at all, it's been pretty, like, it's just like, I think of going back to a pump every once in a while. But then I think about running or exercising with my insulin pump on and I just it's not worth it. In fact, we're kind of out right now.

Scott Benner 44:35
Do you not have do you have on the pod in Canada? You do, right?

Unknown Speaker 44:39
Yeah, we do.

Scott Benner 44:40
And so that not having a controller thing. Feel like something you could want to try it or no?

Emily 44:49
I thought about it, actually. Yeah, it's just what the problem was. I have my old insulin pump sitting sitting in my bedroom right now.

Scott Benner 44:57
So I've got some pumps. You're like, I have I'm on fancy. But so I'm not trying to. I talked around a little bit because I don't I want to make it sound like I'm like, Hey, you know, on the pod sponsors this pocket. Yeah, you should really try. There's like that. But but at the same time, I am interested because there was a benefit there that you had with the ping that I'm assuming he was being hit with the animals. You really like that? I'm assuming you still missed that benefit of being able to kind of not do that. But you made a choice. Obviously, one thing was more important than the other. But what if there wasn't a choice to be made? If would you want it back if that didn't exist?

Emily 45:36
Um, maybe it's just also infusion sets are really uncomfortable more than, like, dexcom sensor things or whatever they're called, aren't that painful at all. Like, when you put them in, it can hurt but other than that, like it doesn't hurt whereas fusion such do hurt. I find you

Scott Benner 45:53
didn't like it. So now, I will tell you that. I think that anybody, people who have been around diabetes longer would probably tell you that every infusion for that feels different. I guess, if the one you got that wasn't comfortable. I would. I'd be thinking about that too. Actually. I was hoping I'd be like, you know what, that hurt? So we're not doing the point. Yeah. Okay. So that is very interesting. So you so you're still being so you listen to the podcast? Like do you employ any of the things we talked about? Do you give yourself insulin before meals or do you?

Unknown Speaker 46:23
Um, yeah, something?

Scott Benner 46:24
How do you manage a meal?

Emily 46:27
Ah, okay. Well, so I am like, I don't eat, eat. So I do eat a lot more carbs. And like, the average person does I think

Unknown Speaker 46:36
don't eat. You're saying, Yeah,

Emily 46:39
I'm vegan. Okay, so, um, so for a meal, for example, I'll have like, around 30 to 60 carbs on average. Um, and I like people to sing like that was something I didn't take seriously until you mentioned it until I heard your podcast and I was like, Yeah, I really should get on board with that. And so people listening really helps. I'm excited to like go back to school. Really try that because that wasn't something I did throughout the school year. Another thing that really So yeah, I usually tell people my meal, and yeah, I usually guess the amount of insulin I take. I honestly don't use insulin to carb ratios because

Scott Benner 47:18
I don't either. I did. I really hit last night I made um, I'm sorry. You're a vegan. So I feel that I feel

Unknown Speaker 47:25
I don't know. I don't.

Scott Benner 47:26
So I made. I made pulled pork yesterday. So it's pork, but then it has barbecue sauce on it. And then it's on a roll and then we had it with chips. And I got hardens, I got Arden's bolus for that. So perfect. I was just like it when it was over. I thought there should be like an award show right now because I get up on stage and receive my award now. It just worked out so well. And then late at night. She's like, I want to get a snack. And I was like, sure. And she wanted popcorn. I made her popcorn. And then I just I over Bolus, the popcorn. And that's how she got the low like later. Oh, I should I just missed on that. Um, anyway. But But the point is the polpark has, I don't know how much barbecue sauces, which obviously has sugar in it. And then bread and then chips on the side like all this stuff. And I just looked at I and she she squirted like some sauce. She was gonna dip something in, I just remember looking at the plate

Emily 48:23
and counting so hard to like have an insulin to carb ratio and like exact and just,

Scott Benner 48:28
it would just I would have banged my head against the wall if I had. There's 18 chips there and each chips a carb and a half and the rolls 20. I just looked at I went 234567 Let's try seven and a half. Yeah. So I got the seven but the seven and a half and went and it was done. Yeah. When when you can get to that point. I just think everything's a lot easier. By the way. I think that most people who have had diabetes for a while just look at a plate and go I think this is about this much insulin, but when you're wrong, then what? Blood Sugar Do you not allow yourself to go pass before you give yourself more?

Unknown Speaker 49:07
I'm 10

Unknown Speaker 49:09
which is 180.

Emily 49:10
Okay, that's like my like once I hit 10 I'm like, Okay, I'm going to take more insulin, somewhere around there. And that's

Scott Benner 49:17
after a meal. So you assume when you get to 180 you assume I've missed on the carbs.

Emily 49:22
Yeah, um, and I did do some The thing is with eating like a lot as much carbs as I do eat, like I actually do the opposite of what a lot of diabetics do which is the high fat low carb I do the high carb low fat but with eating a lot of like potatoes rice beans, stuff like that. Your your sugar, your blood sugars will like go up kind of like no matter what but because I'm not eating fat with my meal, my blood sugar's won't stay up long at all like it'll just go up for like five to 10 minutes. 15 minutes, 20 minutes max and just come right back down. Good. Like if anything, kind of Quickly, so I have to kind of pay attention to what I'm doing and not just. Yeah. Well, like,

Scott Benner 50:07
it sounds like it sounds like to me that if you if you're just getting a 20 minute jump like that, though, a slightly longer Pre-Bolus might take that out. Yeah, I think.

Emily 50:19
Yeah, yeah, exactly. Yeah. and I both think write out a meal. That's kind of what will happen naturally. But yeah,

Scott Benner 50:24
because if you think, you know, it's just this, there's a million different odd ways to explain it. But in the end, it's a tug of war between the carbs and the insulin, right, exactly. And your goal was for the rope to never move. But you need to give, if you're going to use if you're going to stack the carbs side with so many strong guys, then you gotta, you gotta let the insulin guys pull a couple minutes before you let the carb guys pull that, yeah, and it sounds like you're really close to that. I mean, the other thing is to if you had a pump, especially with this higher carb stuff, you could be using temp basals, which I would think would be amazing for you. The one thing that I can think of is you missing more than anything, because if you're not, I don't know what the word is, if you're not concerned with injecting more often, to keep your blood sugar down after a meal, then that's, that's you. That's personal, that's fine. But you're missing out on the being able to like crank your Basal up for something. That's the that's the one aspect you can't you know, you can't reproduce with with injections. I

Emily 51:28
guess. That's true. Yeah. But I do find that eating cuz I'm not eating like a lot of fast with my meal. I do find that my insulin sensitivity is quite good, though. Which is really nice.

Scott Benner 51:39
So it works the way you expect it to.

Emily 51:41
Yeah, for the most part, until I have like a bad like, if I have like for example cake or something then that's like, all hell breaks loose. Like, you know, if I'm having like a bowl of rice then yeah, pretty good.

Scott Benner 51:55
Yeah, yeah, we were at a going away party for my niece leaving for college. And so there was like a dinner. And it was one of those things like you got there. And there were just snacks everywhere. Yeah. And then that was that it was dinner. And then it was like we got a cake and ice cream. And I was just like, I hear you. And so but we really did well with it. It was just there was a lot of it's funny. Because doctors they don't stack and so it was a lot of like, Hey, here's some now do some more do extra here. Got ice cream. Yeah, you think you're gonna eat all that like like there was a lot of those little like sidebar quick conversations. But we did a good job, man. We kept our blood sugar was really good. Actually there. Yeah. But but it was a lot of was a lot of that. It was a lot of here's a little more. Here's a little more. Here's a little more if she was injecting and was a person who didn't enjoy, you know, or was, you know, kind of bristled about the injections. I don't know if she would have skipped food. Like, I don't know what people do in that situation. Oh, yeah. Never do that. Do you ever look at food and go, it's not worth it?

Emily 52:59
Ah, no, actually, I really try not to but sometimes, like, I had that same scenario. We went out for dinner with friends and I got like appetizers, and then the appetizers were like, you know, nachos or whatever. So I took like, a whole bunch of insulin for the nachos already. Because what happens is, for example, like if I have a pizza without cheese, like that's still like 60 carbs or so. But I can take way less insulin for that. Then I'll take with pizza with cheese.

Unknown Speaker 53:26
Okay, because

Scott Benner 53:28
Sorry, just the fact that cheese is gone.

Emily 53:30
Exactly. Yeah. But the second like, for example, so yeah, we were having nachos with cheese and stuff like that. And like, it's hard to be, you know, you can't, for my own mental health. Like, I'm not going to force myself to be vegan 100% of the time. So because I had nachos with cheese and stuff. I was like, trying to just have nachos. But yeah, I did. I still took it take a bit more. And then we had dinner. And that, for me was a veggie burger with fries. So then I had to take a whole bunch more info on top of that. And then we had dessert, which was cake so that I had to see I injected myself like four times and like, you know, Ben, three hours. That's

Scott Benner 54:05
right. So it the injections really don't bother you at all? Hmm.

Unknown Speaker 54:10
Not really. Yeah, that's cool.

Scott Benner 54:11
No, it really is I you know, because that's, we, I think I'm about to put it out. But we did this episode where it was about MDI. And, and you know, somebody's like, Well, how do you do what you do but without the pump? And after the conversation, I said, you can't completely because of the the inability to to adjust the basal rates. But in the end, the answer just is you have to be willing to inject a lot and if you just gotta suck it up. You are it's then it's that it's completely possible. It just you have to be able to you have to be willing to do that. And if you're not, then it's not that it can't be done with MDI and say you don't want to do the things that it's going to take to deal with them di

Emily 54:52
like, Oh, you just got a master like carb counting perfectly and Pre-Bolus and perfectly like all you have to

Scott Benner 54:57
do is figure out how to count carbs completely. Perfect. In pretty great time, and you'll only have to inject one time

Emily 55:04
and predict the future because you know you're eating something else, right?

Scott Benner 55:08
also be clairvoyant, you're 100%. Right? It's pretty simple.

Emily 55:11
Yeah, yeah, it's super simple. Yeah. I've had to like, I've had to, like, explain why I've like gone low, or like why I'm high sometimes to like people. And I'm like, and I'm like, oh, because I did this. And I did that. And I did that. And then I did that. But then this happened. Like, I was talking to my dad one time, and it was like, we were on a walk, and I went low. And it was right after dinner. So he was like, Oh, why are you low? Like, I wouldn't have it. Like, you wouldn't expect that I'd be low after dinner, right? And I was like, No, I took the right amount of insulin. And everything was fine. But then what happened was, I didn't calculate the fact that I just got gone running like, three hours earlier. Like, who would have thought to think about that? You know, like, sometimes there's just little things that you miss, and they make the world over. Yeah. And the result of your blood sugar. So

Scott Benner 56:03
no little things make the world over. That's a, that's a good thing to remember. Because it is seriously because it's these tiny little variables that I mean, you're just a person, right? You can't. Sometimes it's like, oh, look, there's dinner. It's bad enough that I have to go I think it'll take this much insulin, I should probably take attendance before I eat bah, bah, bah, all that stuff. What to do. And and to like, you know, not think, Oh, I went for a run. Three hours. Yeah, I should probably take a little less. That's just Oh, and it's like, oh, you know, I'm

Emily 56:33
feeling kind of stressed. Like, Oh, I should

Scott Benner 56:36
put more insulin because yeah, the day the day that I realized that I had to in to give Arden insulin for adrenaline while she was playing sports. Oh, that was like, I remember thinking, I can't believe I'm about to give her insulin, her blood sugar's 100. Like, her blood sugar is 5.5. And I'm gonna give her insulin with no carbs. And I

Unknown Speaker 57:00
thought crazy. I would never have given myself for that.

Scott Benner 57:03
Exactly. But I knew what was about to happen was she was I, I learned it while she was playing basketball when she was little as if they're going to that game is going to start and her blood sugar is going to jump up 120 points. Her blood sugar would have went from 5.5 to 12.2 without insulin while she was playing. Yeah, but then when the game's over an hour later, all that insulin that held her blood sugar down while the adrenaline was hitting or some of it was still there. But then the adrenaline disappeared. So imagine if all the carbs

Unknown Speaker 57:33
in your adrenalin goes away, just drop. Yeah,

Scott Benner 57:35
that's it. Yeah. Like, like, imagine if you took this big bolus for this giant veggie burger. And then what, like, 10 minutes later, I was able to reach in your stomach and pull out the veggie burger. You'd be like, I need those carbs now. And so that's when the adrenaline just disappears. It's crazy. It really is. So Emily, we're coming up on an hour because you are super chatty, which is fantastic. No, no, no, don't be sorry. It's a podcast. Can you imagine if you didn't talk? I just say something, please. But But you were really great that you said in your email. I'm an extrovert, because I was a little like, you're like, when I hear from kids. Like and I'm sorry. But you know, in my mind, I'm just like, I got I hope they can hold the conversation up because it's an hours a lot more talking than you think it is. And and you were like, No, I'm an extrovert. I can do it. I was like, right on. I was like, well, I want to hear about this Instagram thing. So she's totally coming. Now in the background. Is that a moose? I hear or

Unknown Speaker 58:30
my brother who forgot.

Scott Benner 58:32
No, it's fine. I thought I thought it might be the abominable snowman. I wasn't 100% Sure. No,

Emily 58:38
it's a it's a dever walking through our front yard.

Scott Benner 58:43
It's a beaver walking through my yard. That might be the title of the episode. So it just yeah, I I imagined you live in like in in a city that looks exactly like most of the places in America. Yep. Yes. But in my mind, there's a there's a moose and a beaver out front. And they have this

Unknown Speaker 59:02
igloo somewhere. Probably. Yeah.

Scott Benner 59:08
And that bird that you guys only have that we don't have?

Unknown Speaker 59:11
I don't know. Yeah, I don't either. I'm just simply Jay. I don't know. Everyone has there's me stopping silly plays.

Scott Benner 59:19
So tell me tell me because we do have a couple minutes and I want to get a couple things out of here real quick. But as a 16 year old listening to a podcast First of all, I had fun How'd you find the pie as you just search iTunes or? Yeah,

Emily 59:34
I saw I think I saw your Instagram first or I saw somebody else who's talking about the podcast on Instagram.

Scott Benner 59:40
And what's been your takeaway from it so far? Like if you could say to somebody The one thing I've gotten out of this is

Emily 59:46
this like how like cuz you realize that people are dealing with the same issues but then you don't realize on what level and like it's really relatable all the podcasts obviously because I have the same problem. So Yeah,

Scott Benner 1:00:00
so it's for you. It's mostly community like finding community. Yeah,

it's not as much nuts and bolts about the insulin and stuff like that.

Emily 1:00:07
I've definitely learned stuff like being bold, insulin like doctor. I know, my endo is like really, really nice and informative, but I think he he's more on the safe side with things right? Whereas this is like you're kind of like, no, like if you think you need this much more influence than like, take it like, you know, don't be more or less on the safe side will

Unknown Speaker 1:00:27
say that.

Scott Benner 1:00:28
But isn't it interesting that we call we call like letting your budget or behind the safe side? Yeah, yeah, that's it's it's is that that completely lends to the idea of how dangerous insulin can be if you use it wrong. You know, like that you would consider like, Hey, I'll just leave my blood sugar high my whole life. Sure, maybe when I'm 40 my fingers won't be able to feel like things but you know, at least I'm not. And like, it's it's a weird, it's a weird trade off to make. I get it. Like I understand how the fear hits people. But that is sort of my goal is for to hope people are just like less afraid, but you're not afraid of anything. So you're like, well, you're probably afraid of like, weird stuff. Like boys are. Like that kind of stuff. Right? So that's really interesting due date.

Unknown Speaker 1:01:17
Ah, no, I'm not dating,

Scott Benner 1:01:19
by the way. Good. I appreciate this. Let's spend the last two minutes I'm going to give you some good fatherly advice.

Unknown Speaker 1:01:25
Okay, go

Scott Benner 1:01:26
boys are terrible. And they will only ruin your life. I have destroyed my wife's life. And I loved her. And I didn't even mean to. But I made her. I gave her these kids. And now we have a house. And she seemed I know, I just liked her. And I liked her right into a life she didn't want. She was

Unknown Speaker 1:01:45
hilarious.

Scott Benner 1:01:46
Yes. When boys are being nice to you, I want you to run the other way. Do you understand me? And this is the same information your father would give you just wrong. Yeah, actually, it's

Emily 1:01:55
very similar. Father.

Scott Benner 1:01:57
Yeah. Well, just absolutely. Boys are icky, I think is what you should learn from all this. All right. So what have we learned from talking to you? It's like a wrap up. For me. In my mind, I think we've learned that there's seriously the lack of fear that existed in a 13 year old seriously led to you learning so much about your diabetes, because you were able to just say, Hey, I did this, and this happened, or I did this, I should have done that and pick and figure your way through it. Because you weren't at 13 thinking, if I mess this up, I'm gonna have a seizure and fall on the floor. You weren't, you weren't thinking about that. You were like, 13 you were like, I gotta get through my day, I got to go to my locker and get my stuff I have to do it. I think that there's seriously a huge lesson in the story of how you started taking care of yourself like it there is. People should wonder how much of the impediments they're seeing are self inflicted? Like, because that's what I got out of this. Is that is that a lot of the fear I had at one point I may have put on myself. That's it.

Emily 1:03:07
But the fear is inevitable, right? Like, it's natural. But it's

Scott Benner 1:03:13
I think it's how you respond to it is the question.

Unknown Speaker 1:03:15
Oh, yeah. Yeah. Like,

Scott Benner 1:03:16
do you look at it and just throw your hands up and go, I'm just gonna leave my blood sugar at 11.3.

Unknown Speaker 1:03:23
Because

Scott Benner 1:03:24
I because I don't want to worry about a low blood sugar today. But you didn't think about that. And so you were able to really figure things out because you were. I don't know you had the you just got to do it. Yeah. And you were naive, like a 13 year old. So you just weren't you weren't worried about? myself? Yeah. But yeah, right. You're just like, Here, I'll just jam this thing in here. And it'll be fine. I'll do it again. If I have to do it. No worries. It's all gonna be good. Blah, blah, blah. It seriously that if people didn't take that from this, I don't think they were listening to you. So I think that's what I'm gonna remember from this is the next time I feel scared from something. Maybe the thing to do is just not to, not to overthink it.

Unknown Speaker 1:04:03
Yeah. You really can't. No, no

Scott Benner 1:04:05
kidding me. You're fantastic. I wish you were my daughter. Oh, no. Yeah. All right. Before we go, Why do I not want you to be my daughter? What is what what's your big what do you do that that I would be like, Oh my God, why was this kid mouse?

Emily 1:04:20
No, this was like, I had a job interview. The other day lady was asking me like, what my or my boss I guess was asking me like, what my biggest weaknesses. I was like, I don't know. Like,

Scott Benner 1:04:30
you should have said like, I can't think of my weaknesses. It's my biggest weakness.

Emily 1:04:35
Yeah, actually, I did say that as a joke first and then quickly found something and

Scott Benner 1:04:39
then you were like, I need a job. I better say something. And so you are now assistant to the queen or what? What

Unknown Speaker 1:04:47
is it? You're doing? Um,

Emily 1:04:50
I'm just working at a bakery now. So nice.

Scott Benner 1:04:52
There's a better place for a person with diabetes. I know. So are you like out front, are you making the food I'm now interested in this.

Emily 1:05:03
Um, I just serve customers and like she was she was actually making me go through like my training and she was like, making me memorize all the different names of all the cookies and stuff. So yeah, I just started customers.

Scott Benner 1:05:16
That's cool. And and now it'd be interesting for you to because you're going to be walking around a lot more all of a sudden. And that's true. Yeah, at least if you get low, you'll be good with. Yeah, handled, they're probably powdered sugar in a giant pile somewhere.

Unknown Speaker 1:05:28
So Exactly. I have a handful of cookies.

Scott Benner 1:05:31
I actually worked in a bakery when I was like, 19. But I was making the food. And the job started at 2am. And I did it for a very short amount of time. And I was like, I am not a person who couldn't go to work at two o'clock in the morning. So I stopped. But I wish you a lot of luck with your job. I know you're probably saving up money to travel truck. Really? Where do you wanna go? Ah,

Emily 1:05:54
I don't know. Maybe France or something like that. Yeah,

Scott Benner 1:05:57
by yourself. Do you imagine Are you gonna let some

Emily 1:06:00
I don't know. Just like after high school or whatever. Just saving money

Scott Benner 1:06:04
for the sake of enough money so that you can travel after high school? Mm hmm. I'm back to want you to be my daughter. That was pretty good answer. All right, Emily, I really appreciate you coming on the podcast and being interested in doing this. Thank you so very much for taking the time.

Unknown Speaker 1:06:17
Oh, thank you.

Scott Benner 1:06:19
It was great. I knew when so quickly. I feel bad for ending it because I was like, I feel like we can keep talking. Maybe we'll have to do a part two sometime. Okay, sounds good. The Juicebox Podcast is proudly sponsored by Omnipod and Dexcom. And I want to implore you to click on the link in the show notes and find out more about them. Let's thank Emily for coming on and being so fantastic, honest, open and for just sharing with us her attitude that I think is the basis for like I said earlier for getting rid of your fear. There is something pure and intrinsically important about how she spoke about her diabetes. And really if you take one thing away from this episode, it should be that feeling. I will see you next week with another episode that Juicebox Podcast

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#146 Leo's Dad is not a Doctor

D-Dad Daniel dishes about diabetes...

Daniel is the father of a young son living with type 1 diabetes. On this episode he and Scott chat about T1d issues, ideas and more.

You can also listen to the Juicebox Podcast on: Apple Podcasts/iOS - google play/android - iheart radio -  or your favorite podcast app. Now on Spotify.

+ Click for EPISODE TRANSCRIPT

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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 146 of the Juicebox Podcast. Today's episode is sponsored by Dexcom. And on the pod in this episode of the podcast, I'm going to speak with Daniel who is Leo's Father, we have a really great kind of conversational episode together, it did strike me about halfway through that I don't think we ever spoke about one thing we meant to speak about, but I still really enjoyed it. As I was going back and editing and listening, I just found this one to be incredibly interesting. And I go into a bit of a rant in the 40 or 50 minute mark, which, you know, could happen sometimes. Anyway, Dan's a great guy, and a really good dad, he's just very interested in the ideas that are going to help his son live better with type one diabetes, and those are the things we end up talking about. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before being bold with insulin.

Daniel 1:12
All right, my name is Daniel. I am a father of a four year old type one diabetic who was diagnosed in January of 17.

Scott Benner 1:21
And so it is still 2017 It's October. Yes. Almost October, she you're only nine months in you're Yeah, you're really new. Wow. How did and do? Are we gonna say your son's name?

Daniel 1:33
Yes. My son's name is Leo. Okay. No,

Scott Benner 1:36
don't be sorry. I just, I just want I just want to be sure you want it to?

Unknown Speaker 1:39
Yeah, I'm fine with it.

Scott Benner 1:41
So Leo is was he for at diagnosis? Or he turned four since then?

Daniel 1:45
He was he turned four in November. I was diagnosed in January.

Scott Benner 1:50
Oh, wow. Okay. Yes. It's a big birthday celebration for you.

Daniel 1:54
Yes. Yes, it was. I know. You always ask what was the typical diagnosis, we were on vacation. And the four of us I have another child, we're down to Mexico. And we towards the last couple days, we noticed a lot of bathroom breaks, that we probably wouldn't have noticed if we are at home because he wouldn't have asked he would have just gone and then our flight home from Mexico to Cincinnati on the three plus hour flight. I think I had to get them taken to the bathroom. On a minimum of seven times. Not including before not including in the Mexican airport and the Cincinnati Ohio airport.

Scott Benner 2:29
So no, we didn't say this at the onset. But your position, right? No, no, I'm

Daniel 2:35
not. I'm not that that email address is just, it's gotten in plenty of places, but it is my initials.

Scott Benner 2:43
Just always assumed that that's not no not why I had you on the podcast, so don't worry about that. Yeah, yeah. So okay, so anyway, Daniel's got a misleading email address. So So doesn't matter.

Daniel 3:01
Say I know you so when my wife and I were younger, and we lived in Chicago, we lived in between two bars right by Wrigley Field. And the one bar next door used to always dump like nasty stinking mop water in the alley like in the park in our parking spot. Yeah. And I emailed the older man in Chicago. I'm not sure how you the alternate situation. But it's real shady, obviously in Chicago is by email the alderman and they were like, Dr. Webber, we'll get this taken care of right away. And I was like, thank you. Yeah.

Scott Benner 3:33
Yeah, just cracked me up. Because I had a whole thought process and where I was going, and then you know, when I went, Oh, okay, hold on. Anyway, forget that part. What? What about the urination? Like, what? Where did that take you to? Like, I

Daniel 3:46
never really asked that specific question your kid urinates nine times in three hours. What does it make you do next? We at first thought it was nervous or something like that flying I mean, the kid have drank a ton of you know virgin daiquiris and pina coladas all weekend long and there all week long. And we just kind of chalked it up to that. And then we came home, and probably like the eighth and ninth of January, he was just like, he still wears a pull up. Not anymore, thank goodness, but he was still wearing a pull up. And he was just soaking through the pull up in the bed. And after two days of that, my brother in law is a pediatrician. So my brother in law here in Cincinnati, my wife called him and said, You know, I think there's, I think there's something wrong and and he called me immediately after getting on the phone with her and he's like, you know, is this is this Melissa being Melissa? Or do you really think there's something wrong? And I said, It's me. I said I was working on I told her to call I think there's something wrong, you know that it doesn't seem right. And obviously, in this day and age, you go down the Google hole and you read everything you want. And we had a pretty good idea, but my brother and I kept saying there's no way there's no way. And you know, we I was supposed to fly out to Chicago like that afternoon or something like that. And he said, Bring him in on my lunch break and I'll have them go in a cup and he went to cup and Leah and I were just kind sitting in the front of the office, and I saw him like kind of frantically running around and I was like, we know what this is. And then you know, they prick his finger and it just says hi. And, you know, we spend the next few days at Children's Hospital.

Scott Benner 5:12
didn't I? I'm sorry, the most The best part of this I interview a lot of ladies mostly. But so far my favorite part of this is, is it's the part where your, your wife calls her brother to get medical advice, then he circumvents her to check with you to make sure she's not being hysterical. Right. Right.

Daniel 5:32
Well, and it was, yeah, I mean, it was definitely It was definitely a shock to us. But it was like, you know, you you kind of deal with the cards that are dealt you and you play the cards that are dealt you and we went from there. Right? And yeah, well, so

Scott Benner 5:46
tell me that. Then having a it's interesting. So now your your your pediatrician is related to you. It's different. It's close. What does he have you do immediately. I mean, he sent you right to the hospital or he,

Daniel 5:59
I mean, he called the hospital because he knows people, his you know, his family's been pediatricians in this in this area for a long time. So he calls Children's Hospital here in Cincinnati, which we're lucky to have a great Children's Hospital. And they told them you know, we don't have any beds right now. And he's not in decay or anything like that. His number is not too high. So you know, we'll have open beds at six o'clock. So just go home pack a bag, do what you're gonna do and bring him over tonight. And we did okay.

Scott Benner 6:22
Yeah, well, listen, Cincinnati's got all that extra. I mean, they don't put any effort into that football team. So you can put it somewhere else. Correct. Exactly, exactly. children's hospitals and things like that, which is probably Yeah, better serve, by the way.

Unknown Speaker 6:34
Yes. Yeah, exactly.

Scott Benner 6:36
I saw my son brought me his phone the other day. And he's, I don't know when your children get older if Twitter will still be a thing. But I do a lot of interacting with my 17 year old son where he goes, Hey, look at this. And he throws a phone up in my face. Right. And it was, it was about it was about kin It was about North Korea, and the and the bangles and it said like what is North Korea and the Cincinnati Bengals have in common? I'm always hearing about all the weapons they have. But something I don't know the rest of it. It was it made me laugh though.

Daniel 7:06
I'm not I'm not a native cincinnatian. But living here. We've been here for three years. My wife was born and raised here. And like, the love for the bangles baffles me people just love them and they're just not good. And like they they fired the who did they fire they fire the offensive coordinator yesterday or something like that, like for the first time and offensive coordinator have been fired during the season. But Marvin Lewis has been the coach for like 12 years, and they've done nothing. Like you know,

Unknown Speaker 7:34
it might be a really nice guy.

Daniel 7:36
Yeah, right. Well,

Scott Benner 7:38
I'm sorry to hear that your wife dragged you to Cincinnati. Yeah, yeah. So So you said, you were getting ready to go on a plane. But you did. You stayed back when when your son was diagnosed and stayed home? Or did you?

Daniel 7:50
Yeah, yeah. I mean, I luckily I traveled for work. And I work for a kind of family company based out of Chicago. They're not family anymore, but. And they just kind of understand everything. So I just said, I can't go on this trip. And I and I think I had to go on a sales meeting with the customer. And I just called someone else on my team and said, Hey, can you fly out there and do this for me? They said, Yeah, no problem. And we spent three days like I said, at Children's Hospital here.

Scott Benner 8:13
So what's the advice you get? Now, since you have sort of a backdoor through your through your brother in law? What's the like? I don't know what Leo uses right now. Does he have a pump?

Daniel 8:23
He's on an omni pod into Dexcom.

Scott Benner 8:25
Okay. And so what gets you to that? Like, how do you get to that? Is it something you see something you find online, something your brother in law says to you how does that work, though?

Daniel 8:34
I mean, my brother in law is a great pediatrician, but he really has nothing to do with the diabetes care, because that's just you know, he's just a pediatrician. So, he, he, he, I think he came to children's hospital that night with us and kind of just dropped us off and dealt with that just to meet the people that he knew. And then there was a fantastic nutritionist at Children's Hospital who was just Dexcom Dexcom Dexcom. All she would talk about is how great the next comment is. And what I've learned to see through the T Wendy community is that like, there's so many like connections involved, you know, I feel like 90% of the nurses or the or the, or the nutritionist at Children's Hospital, either had diabetes, or had a kid who had diabetes or grew up with a sibling had diabetes, they're all just so connected to it. So this this nutritionist was just talking about Dexcom you know, all she could like she just kept talking about it. So we didn't really talk with the doctors about it then but then I came home we came home on 13th I think and I just asked my brother in law I said can you call this into Kroger and he called it into Kroger and we we put it on the first time blindly without any any lessons and that was probably the easiest that went on for the first two months and then we struck out about 100 times the next couple times he tried to do it. But Kroger the funniest part about it was Kroger kept calling me asking me Are you sure you want this? Are you sure you want this? it's gonna cost this much money and I was like Fill the prescription. I'll be there now to pick it up. You know, like,

Scott Benner 10:03
and so what? So that's interesting. So did you. Do you have insurance? That? Yeah, yeah. And so it's they're talking about your, your portion of it. Yeah. And yet they tried to make they try to try to talk you out of it. Yeah,

Daniel 10:18
they basically were like, I mean, it was January 13. So we have, we're on a high deductible plan. And we were paying everything out of pocket until we hit that deductible, you know, which was hit on I think, January 17. But that's okay. So, you know, they kept just they called, they called Melissa my life saying, you know, is this is this accurate? And she's like, fill it and they called me, I was like, fill it. And, you know, we obviously I would love to use Kroger, but we switched to mail order.

Scott Benner 10:44
Yeah. Interesting, though, isn't it funny that I mean, it's because that happens to us too. It's, you know, you have the the calendar flips, you need to make your deductible. And inevitably, it's time to buy some stuff and re decide instead of getting hit $100 here and $100. There, you're all of a sudden, like, Okay, this is just one big thousands of dollars bill comes you're like, Okay,

Daniel 11:05
I just I've been joking with with my wife recently. I was like, I wish I knew at first I could just write you know, your health care check. Here you go. Just because we're, we don't we have since the 14th. We paid like zero like absolutely nothing. Right. Right. Yeah. So all the equipment comes my pumps come this time that comment? It's like, here you go. Okay. All right.

Scott Benner 11:25
So you had a Dexcom before an insulin pump? We did. Okay, and what did what did that? So that's interesting. So what, what did you what feedback were you getting from your CGM that told you that my next step is an insulin pump.

Daniel 11:40
I think I mean, this is gonna sound really funny, but like Leo is an eater and kind of like a grazer. And we would have to go, you know, that route that says, like, like, you know, you can have it, but then you need a shot, and like, we would begin to feel bad about it. And so we went around and started talking to children about when we can get a pump, when we did all the pump classes, and it was just kind of made sense. You know, like, it is honestly made our life much easier minus that email I sent you the other day, which we can talk about later. But like, just the fact that like, you know, we walked through Costco and he wants to have a sample. And instead of having to say, we'll take it home, he did I just say do do, and he can eat whatever it is. I think that like my wife, and I got a pretty good grasp of diabetes, right from the start, like, we just kind of looked at it and said, You know, this is what we need to do, and we're going to do it and we're going to get it done, you know, and for the first couple of months, probably like, five, six months, we tried to like control it as much as we could. And as soon as we realized that we can't really have all that control that we can do the best that we can, right. You know, that's when things became a little easier for us until we started. We started Omni pod in.

Scott Benner 12:45
Okay, Major. Okay, so that's really quick, which I like, I like hearing that people got to things like that, like quickly, like without having to, you know, struggle, or I just just saw I mean, it's 2017, almost into 2017. I saw a person this morning online, say, I asked my kids PDF are my kids, endo, we want to Dexcom? And they said, No, we're not ready for that yet. I was like, what does that mean? Exactly. And so you're a person who took it. You didn't speak to anyone about it, you know, slapped it on, he

Daniel 13:19
started going, and I'm pretty sure that Children's Hospital here was like, I remember I called in to say, we have a deck calm. Can you put that in our file? And can you can you go Can you call the center prescription into opt in or whatever the heck fills it now? And they said you have a lot and I said we have a dexcom and they're like, Where did you get it? And I was like my brother in law's pediatrician. He wrote the prescription for me, like, that's just me, you know, it was a weekend and we wanted it, you know, like, I think that we wanted our goal for Leo is to make sure that his life is not any different. You know, we want to make sure that he went with us, he was diagnosed on the 10th I think it was maybe a Wednesday, he was back to school on Monday or preschool on Monday. Like we wanted to make sure that he could go back to school. He goes to a small Montessori School, and you know, they don't have a nurse. So we wanted to be able to track it wherever he was, and know that we needed to do something. And so it was just like a no brainer for us.

Scott Benner 14:11
Yeah, yeah, that's really excellent. Actually, it just, it I think what it shows more than anything, is that that kind of old paradigm idea of you should have diabetes for months and years. Once you really understand how to, you know, once you really understand how to build a fire with sticks and hay in the sun and a broken piece of glass after you get that will give you a lighter, right and you know, maybe, you know, well why don't we just skip ahead? A little bit at least like there's no reason. I can't fathom a reason why you wouldn't let allow somebody to try a CGM.

Daniel 14:48
I mean, I think that like there could be a little bit of a data overload but I like it. You know, I like to be able to look at it. I like to be able to track it. I think I was joking with my wife this morning because like, I went in, he was like, What 143 at like, 5am, and I was like, ooh, got a crack that, you know, like, maybe they never CGM, I sleep a little better. But, you know, I don't know that it's worth it.

Scott Benner 15:12
It's an interesting concept to the idea that, you know, so you just said something that I just made me think of just an odd analogy. But if I had a fire alarm going off in a far reach of my house, but the house wasn't burning down, I don't know, if I'd be like, I would just write one I wander down in the basement, find out why that thing's beeping. And, and, and maybe I get down there, and it's beeping, because the battery's dead. And maybe I get down there, and it's beeping, because, you know, my, my heater is making a little smell or something I don't exactly know, but at least I know what's happening now. Right? Right. It's an interesting concept, with a health issue, an interesting concept to think that there's, there's something happening, but because it's not killing me, right, this second, just gonna ignore it. And that's just an oddity to me, like I get it is,

Daniel 16:03
I mean, we obviously follow groups and read things and some of the things I read where I'm just like, and obviously, we're nine months, I know, whatever that is, and I you know, I think we're doing a pretty good job. But I look at it and I'm like, well, I'll just let him eat it. And I'll correct it when the time. Yeah. Like, really? That's, yeah, that's

Unknown Speaker 16:23
good. Yeah.

Daniel 16:24
And I understand that not and I've heard you talk about it before, you know, you could meet smart CEOs who just can't get a grasp of diabetes and couldn't understand it, you know, like, but, you know, some things I feel like you should be able

Scott Benner 16:36
to think that's, I think, in that specific, you know, situation, I think it's fear to like, I think it's the idea that the, you know, I really for, because think about it, if you think hey, there's going to be food here, in what you've only been with diabetes for nine months, if you ever seen food not need insulin? No, right? Because that would be not having diabetes. So right, you can say, well, maybe I had a bolus longer ago, and maybe it was too much. And you know, there might be some insulin leftover you can maybe yourself to death. But that's fear. That's the idea of I don't have the unknown not wanting to breach the unknown, where and so in a strange way, getting a high blood sugar that you can later correct down is at least an understood quantity. You're right. And so if you're if you are operating from a fearful position, I almost get that I get the idea of why don't we Why don't we just let them get high? Because I know how to take care of that. And that doesn't seem like it's going to cause them to have a seizure. Right, essentially. So you know, but I'm, I'm the opposite. I'm, you know, I didn't had some pretty Arden had some fairly spectacular lows this summer. And they were overnight. And they required a lot of intervention and a lot, a lot of effort and not a lot of sleeping at some points. Right. But it never occurred to me to let her blood sugar be 200 when she went to bed to know that that it never I never considered that. So

Daniel 18:09
yeah, I mean, I think we we try to, you know, play, not play but use insulin as much as possible and take care of it. And there's always a juice box, or, you know, if I gave Leo juice box, he's so little, he would just skyrocket so there's always a quarter of a juice box or something like that, that can take care of it. And I think at the start, we tried to deal with it more like healthy, you know, here's an Africa here's this, you know, and now we're like, here's a Skittle here's an area, you know, they work much quicker and you don't bite me for him. So

Scott Benner 18:38
put your head back while I put the sugar shaker in your face. Seriously, listen, if it makes you feel better, I did something last night that I I hardly ever do and wouldn't really recommend because it is not good for your teeth. But our didn't hit this blood sugar. And last night I don't know if it was one o'clock in the morning maybe and she just kind of went to a spot and I was like you've got to be kidding me. And I and there was no insulin happening. So I thought I know what we'll do. I know what's gonna take her right back to 90 and leave her there. So in her she's, she's asleep. And I whispered to her, Hey, I'm really sorry, I need you to eat these fruits next. And so her mouth like she lays back and I just take two fruit snacks at a time bump them on her lip. she opens her mouth she chews them up when I'm sure she's done. I must have given her I don't seven of them. And then I had her drink a little water and rinse your mouth out a little bit. And and then she went back to sleep this morning. This by the way worked perfect for the budget. Right and and this morning, she comes into my room and she it's dark. You know it's early. Right as dad did I have fruit snacks in my sleep last night. And I said Yeah, why? And she goes there's one stuck in my hair.

Daniel 19:53
I'm amazed with with Leo like he'll he doesn't wake up for a thing like I'll grab it. His hand and he'll stick a finger out. All you know, if he's just falling asleep, it's hard to get him to take like a we were we were shying away from glucose tabs, but they're just so easy that we're now just like, here you go use them. So he'll like you just put it to his left, he puts it any choose, it doesn't remember a thing like it's fantastic. Yeah,

Scott Benner 20:19
I think some people have a question in their mind about how much information is too much information, and how much involvement is too much involvement. When they're talking about their type one diabetes, you're trying to make life easier, not more complicated. And I think sometimes if you don't completely understand what on the pot and Dexcom bring to your life with these devices bring it can sound like they're bringing you work more, I want you to try to imagine that that's completely opposite of the truth. When you get this data back, you can see I put a bullet in here, and this is what happened. I cut off my bazel here for half an hour. And this is what happened. When you get that information back, you start making these decisions that are so kind of precise and intuitive, that the alarms don't happen anymore, your involvement with diabetes actually goes down. The more you understand up front, the less you have to do later. So I'm giving you a combination ad today, this is for Dexcom. And on the pot, because I want to talk about them both. I don't think this is what they paid me for. And they might be mad if they heard it. But darn it, this is the right way to talk about this today. If your Dexcom tells you your blood sugar's 120, and it's starting to creep up, you can give yourself a tiny little bolus and fix that if your blood sugar sitting at 80. And you're worried that it's going to get lower, but it doesn't seem to quite be moving, you can take your Omnipod and just shut your bazel off for a little while. And then that'll allow your blood sugar to drift back up. shutting off your Basal is not going to stop a crashing low. But it could make that little bump and that little bump could be the difference between just bringing in an ad back to a 90 or feeding an ad and then having it be 200 this is a really important aspect of type one diabetes management once you start understanding these concepts, everything just gets so much easier. And when things get easier. alarms happened last. Arden stacks calm. She's at school now it's like 12 o'clock in the afternoon hasn't been once all day. Not once. So Arden's blood sugar has been between 70 and 120 since she's been at school, the last thing I said to her on the way out the door was, hey, we're going to do a little bit of insulin here. I think we both like a point seven for a blood sugar that was 120 diagonal up but she was leaving. It came right back down. She was 110 before lunch. With all this knowledge in this data, I was able to bolus Arden's insulin 15 minutes before she even left her class to go to lunch. So now she has a healthy Pre-Bolus going for a really fun kid meal. I don't know what you're sending to your kids for lunch. But today Arden had a bagel and cupcakes and cheese. It's and I don't know what else up a bunch of stuff. Stuff You don't normally think about being able to give a kid with diabetes and keeping their blood sugar at 110. But again, it's the data it's the information that comes back from the Omni pod and the dex comm This is where this is where the genius lies. Once you have a few experiences, and you can believe that what these devices are telling you is true, the whole world opens up for you. So I want you to go to my omnipod.com Ford slash juice box and ask for a demo pod today they are free and they have no obligation. I'll take you two minutes to get one. And then I want you to go to dexcom.com forward slash juice box and start learning about the Dexcom continuous glucose monitor. These are important steps and ads in the future I'll do more the way the companies want me to do them. But for today, you guys really need to understand this is how I do what you hear me talking about. If you're listening to this podcast and you want to get these things accomplished. I do them with Omnipod and Dexcom I think you could tell right I'm never not amazed by the waking up in the morning and her walking downstairs with a banana peel in her hand going bananas Yeah, all the data in your sleep

Unknown Speaker 24:13
I got

Scott Benner 24:15
no no no I was just gonna say it's fascinating I can't imagine if I walked up to my wife tomorrow night while she was sleeping and I don't know a handful of food my hand and I was like hey here eat this that she would that in the morning she wouldn't look at me and go Are you out of your mind did

Unknown Speaker 24:30
you want to know

Scott Benner 24:33
you know or whatever it ends up being but but I it's just I don't know I don't even know how to explain it to be perfectly honest. It's

Daniel 24:39
faster Yeah, I just think it's it's truly like I just don't know how he doesn't. Did I wake up last night did I do this? Did I do that? And now we've mixed in the whole thing where I told him he was no longer worrying pull up so I waking him up at midnight to pee doesn't remember that either. Like I got I just don't get it.

Scott Benner 24:55
I'll tell you that sounds fantastic to be perfectly because I remember every time I paid last night, yeah, exactly, exactly. Wandering to the bathroom, just being like, I can't believe I got older.

Daniel 25:09
I'll walk into Leo's room and do the quietest thing. And he doesn't move. And we have a 14 or 15 month old, who is the room next door? I opened the door and that guy's crying like, it's ridiculous.

Scott Benner 25:21
Well, so anyway, Daniel, how did we end up together on the podcast? I know, we're pretty much 25 minutes into this and I forget why you're coming on, tell

Daniel 25:30
me. I sent an email and I said, I love your podcast. And if you're looking to talk to a, you know, a newly diagnosed Father, I guess I'm not gonna be diagnosed that my son was newly diagnosed. I said, you know, I'd love to chat. You know, there's questions I may have. There's questions you may want to know about my thoughts and ask some of those, you know, and I think one of the ones that I'm more shocked about that I, like I said, emailed you today was more crazy about is that we went in so confidently to his last visit. And then he went, he was up. Yeah. And that was just crazy to me. Yeah, there's

Scott Benner 26:00
this there's this thing that I don't know if I've ever I don't think I've never said it willfully. or not, but it's, it so falls into the, into the auspice of advice that I guess it's just not something I say a lot. And I have no way to quantify it. It's something I it's something I heard on the internet that I that I tried and work. Yeah, and and so Danny will say here that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. But if you are using an omni pod PDM as your meter, and you're using the freestyle test strips that are coded as 16. On the test strips, there are people who might tell you that you should set the code on the PDM at 18. Some people use 17, I use 18. When I did that, it helped my daughters they want to go down. So you can absolutely take that for whatever you want to take it for I'm not even making any assertions about it. What I will say is that device manufacturers are in an interesting situation where they go to the FDA, they make a claim about this device that they've created, the FDA verifies that claim, and then they are allowed to sell it to you. If they want to change that claim, they have to go back to the FDA, it takes a very long time and invalidates their device. So a lot of companies can't do that. It just doesn't work. reasons that I don't understand in any way, shape, or form, technically or otherwise, when I have ardens PDM when I tell ardens PDM that her test strips are code 18. When they're really code 16, we get much better, more accurate. Blood Sugar checks that more closely agree with her Dexcom. And I'm assuming because of that, we're able to make decisions like so basically, if you're in a situation where you're like, hey, my blood sugar is 110 I'm happy with that. But it's actually I don't know, 140 then your a one c may come back higher than you expect. And it's harder to deal. Like when I'm trying to deal in a world where I want a blood sugar to be at. I need to know it's really 80 I can't write you know what I mean? It can't be it can't be higher or lower because I'm I'm working with small tolerances. So anyway, if you have a on the pod PDM maybe give it a try. Maybe don't I'm certainly not telling you what to do. But Dan here had an issue with Leo where he has a one seat was higher than his blood test indicated it might be. And that was the that was the sage like wisdom that I passed to him that had been passed to me years and years and years ago by some nice person on the internet. So So what happened that you went in and you thought we're gonna be at what what do you want see where you like, this is what we thought we were going to be in the low sixes right?

Daniel 28:58
So he wasn't that he was 771 diagnosed, he wasn't that high. Okay, we immediately dropped to six something, I think six seven then six, six. And we thought we were trending in the lower lower sixes and it came back in the lower lower sevens and we were like what, and endocrinologist couldn't speak to it and was giving us round about answers and none of it made sense. And you know, I think that if you were sitting in the room as a fly on the wall, you could see how frustrated I was with it. And then you know, we fell down that Google rabbit hole like he talked about and we looked and then we we saw it the only variable in the two was he started a pump in May which was two weeks after after last one see. So we went to a totally different meter. So um, since then we are testing on three different meters now but only using only using one cu update.com obviously,

Scott Benner 30:01
you could probably stop doing that, but I get it. But I want to congratulate you on being serious. you're checking, I want to congratulate you for being so rational about it and looking and saying what's different in our lives? Because you went to something that most common sense would tell you well, getting a pump would have helped not right. And in getting the pump didn't hurt. It was this one specific tiny aspect of it. You you I think you knew when you asked me to be perfectly honest,

Unknown Speaker 30:28
right? Yeah, right. Yeah.

Daniel 30:30
I mean, yeah, I read all over the internet, but I just, you know, wanted to hear it from other people. And it's some of it I even called Omni pod. And they're like, no, ours is perfect. And Omni pod is great. Don't get me wrong.

Scott Benner 30:40
No, but they're there listen to listen on, the pod is on the pod is stuck doing what the FDA has told them. They're allowed to say about their products. Right? I listen, I privately have conversations with people at Dexcom a number of times a year where I say to them, hey, you give people this, I always put it like this. I'm like you give people a bazooka, then you teach them how to kill a fly with it. I said, right. Like, why don't we Why don't we learn how to blow up a tank with it? You know, like, right, I think that's what it's for. except they're not legally allowed to say certain things about what their product does. Because it's because if they spent that much time going after all that from the FDA, if they, they never would have got the product on the market, right. But they proved out everything they wanted to prove out like here's one look, I'll say this. Absolutely. Without a doubt. The lower you put your higher threshold on your Dexcom CGM, the lower you make that line when it tells you Hey, your blood sugar's on the way up, the lower you put that the lower your a one C is going to be I can absolutely unequivocably tell you that that is true Dexcom would be happy to tell you that's true. Except they weren't able to ask that of the FDA before they got the thing thing. So they can't actually come out and say it like, right.

Daniel 31:53
I mean, I think one of the other crazy parts of us was is that we were showing we like I literally like had all this data printed out obviously. I showed the doctor I was like we came in at our last checkup and he was averaging a 144 on Dexcom, which is fantastic where this many months in and there's a one C was like, perfectly spot on match to that. And now we're three months later, he's averaging a 130 something. And Aria once he's way off, like what's going on, he's like, well, the a one c score and the blood glucose aren't the same. And I was like, you're grasping at straws here, man, like I understand you don't have the answer.

Scott Benner 32:26
But stop saying random things. Right? Right. Exactly. You have to when you go back down, you have to stop yourself from just looking at him going. You don't know what you're saying. I thought about going on

Daniel 32:38
like the patient portal and being like, we did some research. And here we are. We'll talk in three months and see what happens. You know,

Scott Benner 32:45
let me say this at Arden's last Arden's last. A one C was a couple weeks ago. So her last point was a couple weeks ago. And there's something going on with Arden that I don't not really ready to talk about yet because I don't completely understand that. And, and but but I'm in there asking questions, right? The answers I'm getting back, it's the same thing. It's it's like, you know, you ask the question, you felt like the answer. They were like, have you considered that? It's because the sky is blue? I'm like, No, I hadn't considered. It doesn't make any sense. And you know, so they're just, well, what about this? What about this? And then it comes to they're like, well, let's just wait. And I went home and I was talking to my wife and I'm like, I'm not comfortable waiting, like, why are we waiting? This doesn't make any sense. And we we pressed the doctor and said, No, we're not gonna wait. We didn't wait and it's a week later and I think we found the answer now it takes I can't just start coming on the podcast and telling you stuff like that yet because I don't I don't know for sure. And I don't want to put information out that's not that's not accurate. But but that's exactly what happened was like, why am I waiting? You just I just sat in front of a person for 45 minutes who said nothing to me. They spoke a lot of words didn't say anything. I left going well, this was a waste of an hour. And and on top of that Arden's a one c went up. So I was already bummed out, it was six, which I'm not complaining about, but right she had so many lows in the past three months that we were just, you know, it ended up not it wasn't as stable and when it's not as stable then it's harder to hold lower numbers because the variabilities you know, right. I'm not literally not complaining a sixes phenomenon, right? But we were 5.6 the time before and so you can you can see the difference. It's just a tiny bit of variability caused the half a point move imagine what happens when you're at 150 all the time, or you know, that's how you get two points higher. Anyway,

Daniel 34:36
yeah, and I kept like a cleaner wife. I was like, No, we have really good control like you can see we have good control of it but our numbers not right, like so. I mean, I was I was expecting him like I was complaining enough that I thought he was gonna say let's rerun the test and he did not do that. And I ordered home a one T one test a one t test on Amazon, but I didn't use them. If I do You don't work because I

Scott Benner 35:01
it's something I wouldn't occur to me to do, because it just seems like it wouldn't work. But

Daniel 35:05
um, yeah, I mean, they have them. And I was like, I'm willing to try it just to see if I get the same. And then once we thought about it more logically and realize, you know, here's the variable. I'm like, okay, I don't need to spend the $50. And I returned them.

Scott Benner 35:15
Right? Good for you. So I just had this whole picture in my head where you're explaining to your wife, no, you don't understand we have the numbers. This isn't right. And just in my mind, the thought bubbles over her head, or I, my mom was right, I should have married this guy babbling about numbers. And he's clearly he's clearly wrong. And I'm gonna have to start cheating soon.

Unknown Speaker 35:38
Like I just said the whole thing rolling through her head. But

Daniel 35:41
he was almost he was just as upset as I was. We were just like, I just don't understand. I mean, we do a really good job of like, sharing the responsibilities. And I traveled for work. So she's, she's on top of it a ton of the time as well. But like, we were both just like, what are we going to do? And I think she from the start, she was more like, we need to get that number lower. We need to get that number lower. And I was like, I wasn't there with her yet. I was like, let's just get this under control. You know, it's new to us. And now I'm like, No, get like give them into Lenny's do I

Scott Benner 36:11
140 What are we doing? Yeah, national tragedy in your home. Yeah. look sad lays down doesn't get up for an hour's like how the boys at? Leo went to 141. Yeah, exactly. We covered all the windows are sitting. But listen, I think that's By the way, do you find that easier? I find it easier to keep blood sugar's lower than I do to chase them around when I'm chasing them around. I get I'm exasperated all the time.

Daniel 36:40
I think I definitely I mean, I think you said it last week, you'd rather flat up or down last week, obviously a long time ago now. But you said you'd rather battle a 67 than a 267 or something like that. I'm 100. We both are 100%. in that in that campus thought, you know, we want to battle not that low. Obviously. I think it's really hard to have that. What am I trying to say? The Children's Hospital does not agree. I think the tech is way behind, or the hospital's way behind where the tech is. And obviously, I think that the hospital and the doctors have to deal with, with the average, not with the people that understand it, or the people that can afford cgms and whatnot. You know, like, every time I'm in there, they're like, you know, this is rad. I'm like, it was 75 you know, like, when he turns when he turns five, you're gonna tell me a 70s. Okay, right. So why are we even talking about it? And I always say to him, I said, I have to imagine that. With with people having seen cgms the the risk of extreme lows has to go down. So we need to talk more about that, you know, like, obviously, we were going to lunch the other day, and he was 71 and straight across. And I was like, Okay, I think I can Pre-Bolus. And before we get there, so I Pre-Bolus them. And then literally we pulled out of the garage and he went double arrows at like 68 I was like, Oh, this is going to be bad news. So we pull into Starbucks, where we're going anyways, just down the street for the fabulous lunch that it is. And I order his peanut butter and jelly. And then I pricked his finger, and he was a 30. And that's the lowest I've ever seen him, right. And I like went up to the counter, I was like, I'm gonna pay for this juice. And the second and like, you know, like, obviously, you can deal with it. And I don't want that to happen all the time. But at least I knew it was coming. You know, like, I feel like at that CGM would have said 38 that he would have been, you know, at 28 or 20. And that would have been a different story. You know, so having the technology there. And I just feel like sometimes the doctors don't understand that we're monitoring it. You know, I don't want to be like I'm helicopter parenting, but we're monitoring it 24 hours a day. Like I always know what's happening.

Scott Benner 38:33
Dan, you just warmed my heart so much. It was already swollen with pride, and then it's grown more. I want everyone to hear that even though it didn't go well can Pre-Bolus a 71 he's a madman. It's fantastic. I will tell you the this so far, this new school year is only a week or so old. But you can Arden is she more mature now. So there's a lot of that anxiety about school starting is gone away. So we didn't get the highs that we usually been getting years before in the first week or so. And she's been coming in coming into our Pre-Bolus at lunch a little lower than she did last year. So I'm seeing a lot of like 80s and 75 like when we're trying to Pre-Bolus all I did all I've been doing is been Pre-Bolus thing with more of an extended bazel. So not that not the correct I'm not correcting you, but that's 71 if you would have done I get you're trying to get some insulin moving and you're gonna be there in a couple minutes. And you can believe that that insulin is not even gonna start working before you're sitting down and you you experienced the low off of something that happened prior. But right it sounds like to me, but I but what I've been doing in school lately is like you know, it's if it's an eight unit bolus for 10 unit bolus for lunch, it's here's 20% now and then the other over a half hour or an hour and that that way it's happening it's moving her blood sugar's going in the right direction when she starts the but I haven't done A ton of insulin Endor when she's a little she's to loading right.

Daniel 40:05
And that's the one of the other funny things you mentioned. The other thing that hospitals really not on top of is like they're like he's for don't people. And I'm like, No, thank you. If you know if he doesn't want to finish this pancake, then I'll you know, he'll eat in Africa, and we'll be okay with it. Like, I got to be in the right place for that.

Scott Benner 40:23
Yeah, it's, um, it is really, I mean, you get the idea. Like everybody hearing it, it's just thought the same thing. I just thought like, it's sometimes a four year old might just look up at you and be like, I'm not eating that. And then you are gonna be in a situation where you curse under your breath for a second. And then you're like, Okay, how do I make up for the all the insulin I just gave him, he's not gonna eat this pancake or whatever. But if that happens every once in a while, isn't that way better than the alternative of your kids blood sugar being 250 all the time. Like,

Daniel 40:53
I mean, not common sense. We have barely gone over a two we barely go over 200 now on spikes, and we are much happier and a house because of it. We can see that he is happier. He had a soccer game last weekend. He was really high going into it. And it was miserable to watch and to be a parent of like, I just wanted to pull him out of there because he did not want to be bothered to get participating. And then we had another one this weekend. And he was like he went in at 150. And it was perfect.

Scott Benner 41:20
Yeah. Well, last last night, Arden had a we had a an insulin pump site. Go ahead sooner than I expected it to. So she gets this now for me. She's She's has these stubborn highs that I can affect. And when I tell you that if I told you we were battling stubborn highs yesterday, How high do you think I'm talking about?

Daniel 41:38
I mean, listening to you, I know you probably like 190 Yeah, it was 150.

Scott Benner 41:41
I was like this mess. Yeah, everything is upside down. This isn't working, right. So I tried, I pushed and pushed as she was in the afternoon school, she came home. The first thing I said to her was, I'm going to Bolus this one more time. And I said, if it doesn't respond the way I expect it to, if there's not some sort of outside influence going on, that I can understand that's maybe more psychological with her or like, you know, physiological that I can't write, you know, one more bowl is this doesn't work. We're bailing on this thing. And so we did bail on it. But I was on a phone call. And so I did it later than I wanted to. And I realized that as I was handing her dinner, I was like, this is probably not gonna go well, you know. And so I bullish really heavily with the new pod. And it took a while for it to actually work. So her blood sugar hit, it went way up last night, it went to like 364 an hour. And so it was just one of those things where she ate a meal with basically, not nearly enough insulin, and I got it back down pretty quickly. But when it popped up in that hour, I heard she's doing her homework, she came over, she looked tired when she shouldn't have looked tired. And then she said to me, Hey, can you rub my ankle, my ankles are starting to hurt and like, you know, all this stuff that you don't realize is from the high blood sugar.

Daniel 42:56
Right? And it's I mean, she's she's older, so at least you can like, tell you what the issue is. I mean, try having a four year old try to tell you what his problem is, you know, and a lot of times he'll just tell us he's low because he thinks he's gonna get sugar snacks, you know? The cookie? Yeah, yes, exactly. That's what comes

Scott Benner 43:12
out. You people are like train seals. I hear you. So tell me something. So you, you're not that far into it. You've you've really embraced that you've had a low blood sugar. That's scary, and it didn't dissuade you? Can you tell me? Is that just who you are? Do you think? Did you learn something that helped you with this? Did you hear something, see something, do something? What puts you in this mindset quickly? Because it is my goal that everybody feels like you as soon as possible. So how does that happen?

Daniel 43:44
I mean, I think I mean, not to toot your horn too much. I we listened religiously, Melissa started listening first. And I started listening as well. And now I'm way more into it than she is. And I think

Scott Benner 43:55
I've just two things. What's wrong with her? Why is she not isn't?

Daniel 43:59
No, because she's definitely into it. But what happens is I'm like, all drive to school, or I'll be at the airport drive to the school, or I'll be at the airport, so I can listen to it. And I'll be ahead of her. And I'm like, did you hear this today? Actually not yet. And I'm like, Okay, so,

Scott Benner 44:11
so I did not ask this question to hear about how great my podcast is. But please go on and tell me how great,

Daniel 44:16
it's fantastic. So I just think that we've always we've come to I mean, like you can see, what am I trying to say? There's always influenced and there's always carbs. Like they're not we're not all of a sudden going to be out of one or the other. So we can always correct whatever, whatever harm we've caused, and not that it's really armed. And, and for us, you know, like, I'd much rather have that low than the high because, you know, I mean, obviously I don't think Leo is gonna lose a limb or an eyeball, like in five years. But like, there's, you know, there's long term effects that are, you know, just as great If not, you know, greater than short term effects. And I think that having a CGM on him has enabled us to not have to really worry that he's going to go too low. You know, like, my phone beeps in my room all night long. You know, that night. When it goes up above a certain number a low and I, and we don't miss it. So I think that there's a, we just come to realize that we're not going to kill him, you know, we're we're just trying to make life better, we're trying to make it you know, we've we've seen that when he's in that range, and we try to keep him between 80 and 150, but obviously a little bit lower, that he's a happier person, and it makes the household happier. I love that somebody

Scott Benner 45:27
just came on the podcast and said, 150, like, it was really high. You were like, embarrassed, like, you know, it's been 80 and 150. But that 150 I tried Scott, I promise, we try not to go there. I just, it's such a well, no, it's just it's such a seed, then you don't know, because you're nine months into it. But I'm, I'm 12 years into it. People did not speak about this, like this, even in the in the in the last few years. It's only happening and, and I'm gonna say that I was talking to someone last night. And we're gonna do I'm gonna do a joint podcast with somebody which will probably come out prior to this. And when you hear that, she'll be like, I heard that that was months ago. But it was. And so we were talking about what we're going to talk about while we're on there. And I just said, Look, I said, my goal with this podcast is, is to just get rid of the old norms to tell people how important the technology is, if you can afford the technology, if you can afford the technology, you don't have it, in my opinion, you should, that it's that simple. I mean, like, I know, there's personal preference. I understand all that I get that some people don't want the beeping. I trust me any argument you're making in your head right now yelling in your car, or whatever you're doing. I understand. I think you still should.

Daniel 46:36
I mean, you know,

Scott Benner 46:38
yeah. And because I want because you should because it's a bigger conversation. It's how you feel who you are, how your brain works. It's it's you know, is your ankles are sore while you're doing your homework. It's the story I told months and months ago about the woman who contacted me after I helped her with her with a very young child and said that her sister child's on the ground playing the way I remembered her. So she what she was saying was that for a protracted amount of time, her kid just wasn't the same person. Right. And and so, you know, it goes back to to Lynn harbor and talking about her son and saying, Yes, my son passed away, and he had type one diabetes, but I'd rather him have had 20, some amazing years than 40 years, or 50, or 60, or 80. Like, do you really want to live this long, painful, unpleasant life. And and your point, which you're making really well is that if you're careful when you have this technology, and you're reasonable, and you test when you're not sure, and all the things that go along with being safe, you're probably not going to have a problem. And having said that, you probably are too, but so is everyone else with diabetes, if you leave your blood sugar crazy high for safety sake, you're still going to have the same 38 low that everybody else has. It's not, it's not the people who keep their blood sugar at 80 or 90 or 100 that have all these lows. When you understand how to keep your blood sugar 90, you have less lows. It's the it's it's when you're up at 300. And you've gotten to the point where you're like, I don't know what to do. Here's all the insulin in the house. That's how you get low later. Right. You know, I mean, I just got done telling you over the last hour my daughter was low last night and she was really high last night. Now it was a it was a breakdown of the technology that that caused the high. But as soon as she was high I had to over Bolus and it created a low later when she's when she's 130. I don't over Bolus i'd nudge bump little little bits of insulin here and there. I yeah, I can't do it anymore. That's it. Just let's just listen to me. I get no I'm just kidding. Like there's, there's so much common sense in that. And then people most people don't listen to most and most people with type one diabetes, don't hear this podcast, they hear their doctors, and they hear it's okay, it's 180. It's 200. Don't worry, it'll come down. They're young, it won't hurt them long. All the excuses that trust me, they don't know if they're true or not. If a doctor told you it's okay for your five year olds blood sugar to be 250. Because long term, they have data that says that doesn't hurt. I I'm going to tell you right now, you don't want to be the one to find out. That's not true.

Daniel 49:11
So get a new doctor.

Scott Benner 49:13
Because when you find out that's not true. It is too late and irreversible at that point.

Daniel 49:18
So I mean, I just think that just having a dexcom alone makes a difference. You know, some people prefer shot, some don't whatnot, but even just having the CGM I think has made our life easier from the start because we knew and then once we got better control, we could try to keep it down and we're trying to do it and you know, the pump just makes it easier. I think the pump makes his life easier. Yeah. And he really hated hated having lantis. So

Scott Benner 49:41
Dexcom Dexcom is the speedometer on your car. Like let's say that if you went over the speed limit or under the speed limit too far, you are going to die? What would the most important thing be in your life then your speedometer? Right, right? Like it really would be if this was speed and we run a bus and there's a reference no one's gonna get Seriously, that's worse than the matrix. No one's getting the speed. No. But the point is, I'm on your bus on your bus and you can't act. What are you gonna do?

Unknown Speaker 50:13
By the way? By the way, No, I

Scott Benner 50:15
know. I just realized I say matrix all the time, because I really do feel that way. And then I just said speed. And these are both canon Reeves movies. And they are both a huge camera. Reeves fan. I don't know how this has happened. Although those john wick films are fun, but that's not the point. The point is, the point is this damn damn it is that you can't have a disease. That is basically the fluctuation of your blood sugar. If it goes too high, you're going to have long term horrible health effects. likely if it goes too low, you're going to drop that today. That can't be the narrative. And then you tell me, hey, there's this thing that tells me where my blood sugar is. But I don't need it. Like that. What?

Daniel 51:00
Yeah, I mean, I'm with you, Melissa. jokes that like, you know, if all of a sudden we hit the lottery, our foundation, we like providing Dexcom to people that can't afford it. You know, because x comes away all the time. That's how I dream. Yeah. And there's like, no way to do it. Like, I mean, like, I can just find a kid and hand him a dexcom. But like, you know, you can give insulin to infant for life. But I can't give like Dexcom for like, yeah, like, Listen, I

Scott Benner 51:22
mean, there's a barrier for money, obviously. And that is the other side of it. There are a lot of people listening right now. Like, look, I would love one Shut up. I can't afford it.

Unknown Speaker 51:30
Right, right. I

Scott Benner 51:31
get that I really do. But here's what I'll tell you. If I think about this, like this, I was watching. I was on the Facebook yesterday. And apparently, they're these glasses that help people who are colorblind to see colors. And I've now seen two videos of grown men in their 50s 60s who have lived their whole life not seeing colors put on these glasses. Now, apparently, I get from these videos that these glasses must be very expensive, okay. But if you saw these guys put these glasses on, your heart would break, you'd go out, you'd find somebody was colorblind, you'd buy a pair of these glasses, if you had to sell your car to do it, you'd hand it to them. Because it's, it's genuinely beautiful to see somebody have that experience. I think I think this is the same situation. I'm not saying everybody can just dig up 3000 $4,000 if you're paying out of pocket, I'm not saying that. But I am saying that if there's any way for you to accomplish it. It is really, really worth your time. And I did not I listen, I do not mean, I do want to say to people, I don't mean for the podcast to sound like a one hour advertisement for the people who were buying ads, the podcast. But you really do need to trust me and think of it this way. I'm taking the ads from these two companies. Because I'd be saying this with or without them. The reason you don't hear other companies come in leaving ads. And by the way, other people do want to put ads on the podcast. But because you don't hear that is because I cannot speak this passionately about their products. And this podcast is not about making money. For me this podcast is about getting this information to you. So if you ever hear me Take another ad from a different company. You must be like Scott loves that. because trust me you don't make enough money with a podcast to sell out one human being it just isn't. It isn't like that.

Daniel 53:17
Now, we should expect to see an ad for the next Keanu Reeves movie.

Scott Benner 53:21
Well, at the very least that john wick. But yeah, that I would show for I gotta be honest, if you ever hear me start doing movie reviews. Don't for the money at that point. Like, I'll tell you what cars 15 is fantastic. They have not lost the franchise at all. And then we spoke for a whole hour but nothing.

Daniel 53:42
We if I don't if I don't ask you a question my wife will act will kill me. I don't because

Scott Benner 53:47
fundamentalists a couple of times. Yeah, I don't want her to be upset. Go ahead.

Daniel 53:50
We can't we cannot figure out fatty foods for the life of us pizza. We just fight us all the time. Extended boluses I feel like a horrible item. How do we how do we do that?

Scott Benner 54:00
So everyone's different than we know this to be true. So what are you telling me that the boy has pizza, your Pre-Bolus and you're still getting high afterwards?

Daniel 54:10
I'd say we get like high like an hour and a half later.

Scott Benner 54:14
Okay, and then does he get low after you correct it? Maybe not totally. So what does this tell you?

Daniel 54:23
That we're just not giving them enough insulin out front and covering it for longer periods of time

Scott Benner 54:27
more insulin and you needed a covered and the coverage?

Daniel 54:30
So the question at that timing and amount. He He's on such a little amount of influence, right. And so I feel like when I do an extended bill if let's say he eats 50 card, two slices of pizza or whatever that is, you know, so 50 cars will give him maybe maybe two and a half minutes if I can remember off the top of my head. If I extend that two and a half units for four hours. It's not gonna work. Like I feel like I or three at whatever it is. I feel like I need to triple the amount that amount of influence to extended.

Scott Benner 55:00
So you might need more because we listen, there are times when you do an extended bonus, I just had this conversation with Joan, who was on like one of the episodes in the in the first year, we were talking about extended bonuses on the phone yesterday, about about her son, and similar ages. And so when I when I said to her, and what I'll say to you is, if you're going to extend the bolus out, you may need more insulin. So if this theoretical 50 carbs needs two units, two and a half units for you, but you're going to extend it that might end up meaning it needs three units, or three and a half. But if I was you, I would do some bazel adjusting in there as well. So if I if I had pizza, and I saw that I was getting high an hour and a half later. But I mean, How high are we talking about?

Daniel 55:44
I mean, I think he gets he can break 250? You know, 300? Maybe? Not not ridiculous? I mean, right? So we're not breaking the Dexcom.

Scott Benner 55:54
So what you need it like so if I was gonna have pizza in that situation? What's his basal rate point for How old is he,

Daniel 56:01
he's he's I mean, he's got a bunch of different ones, I think the highest one he has is point 357. At night, he tends to drift up at night so

Scott Benner 56:08
that I would double his basal rate, or 100, you know, as much as I could for probably two or two and a half, maybe two hours, right. But I would start it I'd started about a half an hour before the pizza for maybe two or two and a half hours. That way, we've got a nice wall of basal insulin coming, that's going to help with the pizza. And then you need the bolus enough to stop an initial spike. But then stretch the rest of it out over an hour, not three hours or four hours, but just over an hour. So there's still a heavy amount of your Bolus still exists in that time, just prior to the spike. So if you're seeing a spike in an hour, but if you Bolus all of it up front and a half hour into the pizza, he starts getting low. And so you need to just there's that first half hour in there where you sort of need to take half of the bolus and move it to a half an hour later. And then let it and then let it hit him again. Because what's happening is he's eating it, you're keeping the initial spike down, then it's getting into a stomach is starting to digest and it continues to digest and continues to digest and keeps pushing and pushing and pushing his blood sugar up. You have to have enough insulin there to fight it. I think a combination of of a doubled bazel rate and a slightly extended bolus but not a crazy extended bolus is the way to go. Because there's two there's two windows here there's this first window of of spike. And then there's the long than you're seeing long a tail on it. If you control that first hour and a half better than I think the tails not as drastic, and you could probably adjust it pretty well with just a little more insulin. And make sense. That's all that's okay. That's it. That was Did that make any sense? I don't know what I'm talking what I'm saying. No, I

Daniel 57:47
mean, it made sense. And we'll try it but you know, we'll try everything one let me boil it down

Scott Benner 57:51
in a simplistic, very simplistic. Your issue is timing and amount of insulin. Now, good luck figuring out how to fix that, but right but but there is a there is an answer. It just it's not evident to you yet. So keep trying. Keep trying keep moving. Well,

Daniel 58:12
he's a four year old kid he wants to eat pizza.

Scott Benner 58:14
Yeah. Pizza now. Although First things first Today's the 19th of September. I should probably not tell people how far in the future some of these are recorded because it probably sounds weird. But I'm just excited to download the new operating system on my iPhone today.

Unknown Speaker 58:30
Aren't you nervous about your Dexcom though?

Unknown Speaker 58:32
Never nervous. I

Daniel 58:33
was thinking about it. I've never nervous.

Scott Benner 58:36
I don't think enough to be nervous. And that's my that's my superpower my ignorance.

Daniel 58:42
Because I actually it should be it's coming soon. Um, I was thinking about it last night. And I was like, Well, you know, it's gonna they're gonna say that Dexcom is not ready, and I'm going to do it anyways. And then I'm going to get some funky beats and somebody no names mentioned will tell me you should have updated yet. You know, listen,

Scott Benner 58:57
before the podcast. Here's what I will tell you. I happen to know how they do it at Dexcom. And they are going to I would bet I would bet anything and I know nothing. No one's told me anything. But if you upgrade today, that message about hey, this app's not compatible with this operating system. I bet you don't see it two days later, because that's a live thing. That's a live thing they're doing. They have Pete there are people out there right now in California sitting at their desk cracking their fingers waiting. And they're gonna.

Daniel 59:32
Yeah, on a completely side note, the people at Dexcom are the nicest ever. We went to San Diego for vacation this summer. And I just sent a random email saying hey, my four year old T one D blah, blah, blah. Bring him in. We'll give him a tour. Yeah, it's beautiful. They showed us all around the manufacturing and everything was fantastically cool.

Scott Benner 59:49
I've never seen it. I've heard it's really interesting.

Daniel 59:51
It looks like I mean, it looks like you're in like a science movie. Like there's just a bunch of people and like lab coats and there's like hand washing stations before they go on to like this. Free rooms. And you know, it's just a pretty San Diego chill atmosphere. And then you throw in a big science lab. And it's crazy.

Unknown Speaker 1:00:07
No kidding.

Daniel 1:00:08
I emailed them as well asking about the watch. And they somebody called me yesterday, and we had a long conversation about it. And he basically said, in theory, and he used that in theory very loosely, because I'm sure it's gonna happen rather quickly. Once the once they get it ready, you wouldn't even need to carry your phone anymore.

Scott Benner 1:00:24
Yeah, if you had the new Apple watch with cellular, right, that the Apple Watch three or whatever it is. Mm hmm. Yep. You shouldn't, you shouldn't need a receiver anymore to see your data. Yep. And they can even that now think about that, like you're calling it a watch, right? It could be anything like that the watch is an inch square, you could have something in your pocket, that's an inch square that has your array,

Daniel 1:00:44
right? Like Dexcom could just say, Hey, we're gonna put an LTE LTE receiver or something like that on the on the center of the transmitter.

Scott Benner 1:00:52
I think the point is, it's limitless at this point now, right? Right. They've just opened up their API to developers. Now Now if I'm a developer, I can make the tiniest I can make the thing the size of a credit card if I want that picks up that signal or, you know, geez, you could have an app on your computer now like there's all kinds of stuff that can happen so lots of good stuff coming.

Daniel 1:01:14
I joke that I want like a like a stock picker above my TV in my bedroom that just flashes his current blog because I don't have to roll over and see your phone.

Scott Benner 1:01:23
I will say this and I've had this thought about twice while we were talking that as time goes on this all sort of lessons all that like the involvement lessons because you don't need it as much because you're, you'll know, a steadier world like listen, I'm gonna pull up I haven't looked at Arden's a blood sugar all morning, right? I just I've not been once looked at it. So I can go back now five o'clock. Now it's 1115 now Arden's blood sugar's been between 120 and 67 for the past five hours. And if that's not something that I could have said a couple of years ago, and and they'll be an but the bigger lessons, I think for you is that I haven't looked at Arden left the house this morning at 740. I haven't looked at her CGM, since she's been gone. It's 1120. Now, so that will happen for you at some point, you will get it so just kind of it'll be so easy at some point. You won't have to think about it constantly. And then you will look up one day and see that little stock ticker above your television saying I don't need this. It's making my hair gray.

Daniel 1:02:31
I got it. I gotta be done with it. I checked probably three times over here on the phone.

Scott Benner 1:02:37
So I have I'm gonna give you a couple more minutes here. So what what is Leo's blood sugar by the way that Leo's names got to go in the title because that's a great name. But what what is Leo's

Daniel 1:02:48
key is currently 112 and straight across and what

Scott Benner 1:02:51
is he been since we've been on the phone?

Daniel 1:02:53
Uh, it's kind of hard to sometimes it's hard to tell. Could you get that green line up top but his three hour? I'd say he's been in 100 the entire time like the low one hundreds of 112. Since we've been on the phone, right before we got on he had he had gone up, but I think he had snack at school and they don't Pre-Bolus. So he hit 150. right then. And then just started coming down right away.

Scott Benner 1:03:18
The ones where you guys, you guys have a good handle on it. You really do. Yeah, if you're snacking, not Pre-Bolus and going to 150 and back to 112 You're You're doing a great job, but good for you and good. And by the way, try and I've not talked to you for an hour, obviously Melissa deserves some sort of a metal Dan, you're not easy to get along with. Really, it's your spectacular you make I'm gonna feel good all day, about about about this conversation because

Daniel 1:03:45
you can do the next one with her and get her perspective. Yeah.

Scott Benner 1:03:49
Of course. That's not my goal to get to break up families. And so listen, people are like, why is your wife not on the podcast? Like, please do that the other day? What I'm doing wrong, and then I'll feel compelled to stick up for myself and 45 minutes into that you'll be like, I think I just heard two people kill each other on a podcast.

Unknown Speaker 1:04:09
Anyway,

Scott Benner 1:04:10
it has been an hour, I gotta say goodbye. But thank you so much for coming on. I really genuinely appreciate it. Thanks so much, Dan for coming on and telling his story. Leo story and his wife story who we may be made fun of a couple of times, unnecessarily. We apologize about that. Thank you very much dex comment on the pod for sponsoring the show, you can always go to dexcom.com forward slash juice box or my omnipod.com forward slash juice box for more information. And there are always links that are clickable in your show notes right there in your podcast player. Just click right. They're not going to bore you at the end here. Thanks very much for listening to Juicebox Podcast. We'll be back next week and every week in 2018. With a brand new episode coming up. We have a bunch of stuff going on. But one of the things I'm working on is on the pod has a few announcements, and I'm going to try to get somebody back on from the company to talk about that. I've been wondering a lot about Dexcom. Lately, I'm hearing stuff. So I'm gonna reach out to somebody over there and see if we can do a couple of technology shows coming up really soon. All right, guys, have a good week. I'll see you soon.

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#145 Is Your Insulin Compromised?

Cold supply chain management is important...

Alan Carter is the author of the study, "Insulin Concentration in Vials Randomly Purchased in Pharmacies in the United States: Considerable Loss in the Cold Supply Chain" and he's on the Juicebox Podcast to explain what all of those words mean.

You can also listen to the Juicebox Podcast on: Apple Podcasts/iOS - google play/android - iheart radio -  or your favorite podcast app. Now on Spotify.

+ Click for EPISODE TRANSCRIPT

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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, welcome to Episode 145 of the Juicebox Podcast. Today's episode is sponsored by Dexcom. And on the pod, we'll be talking a little more about both later in the show. And there are also links in your show notes. But at anytime day or night that you get the feeling like you want to just know more, you can go to dexcom.com Ford slash juice box, or my Omni pod.com forward slash juice box. In the beginning of 2018, a study came out that said that they found that insulin can degrade during the shipping process. And it went out in the public and everybody got very upset about I got a lot of notes from you guys. A lot of notes saying hey, can you please find the person who wrote this this study and find out more? And so you know what I did? I found this episode is with Alan Carter, Alan is the lead on the study. The study is called insulin concentration and vials randomly purchased in pharmacies in the United States considerable loss in the cold supply chain. Okay, listen, a couple of things. First of all, nothing you hear on the Juicebox Podcast should be considered advice medical otherwise. But second, don't let that kind of boring title to Alan's paper throw you off here. This is a really good conversation. Alan has done a lot of work for people with type one diabetes over the years, he works for a nonprofit. And he's insanely good at describing this process. without it being let's just say as boring as the title of Alan's paper, which is very good. Even at the end, we'll offer an email address. If you want to read the entire paper, all you have to do is email him he'll send it to you. I mean, come on. What a good guy. All right. You guys ready? This is Alan Carter. I don't know what to call this episode. Because I don't think I can call it insulin concentration of vials randomly purchased in pharmacies in the United States considerable loss in the cold supply chain, going to have to think of something else.

Alan Carter 1:52
I'm Alan Carter, and I'm a farm D pharmacist with 40 years experience working with patients with all kinds of diseases, including diabetes, and I've done some work in monitoring, helping people monitor their diabetes outcomes, using alternative tests such as fructosamine. Besides just blood glucose, I took an interest in why biosimilar insulins might be problematic and they apply in enough patients have had issues with their control that they couldn't determine anything else other than maybe the insulin wasn't quite as potent as they were expecting it to be. And I thought this would be a good idea to compare two different insulins to see how much difference we could find

Scott Benner 2:40
interesting. So on you, and I'm assuming there's other authors on your paper. Are you the lead? Or how does that work?

Alan Carter 2:47
I was the lead as the guy had the bright idea to try and do this and then convinced MRI global to write a grant to look into it further. Just to see what kind of differences might be there since we do analytical work for a lot of government and private clients in drug development and stability testing and various other activities involving toxicology and pharmacology. And I've been doing so for over 40 years here in Kansas City.

Scott Benner 3:23
Wow. Okay, well, so this paper, the title of this paper is insulin concentration vials randomly purchased in pharmacies in the United States, considerable loss in the cold supply chain. And when your paper published, and it made its way around the diabetes community online, I think it really was alarming to people the idea that it's so can you explain just how you started, but it's such a simple concept, but you guys went into a pharmacy and what do you do?

Alan Carter 3:52
Well, I, we have a pharmacy here at Kansas City that I'm the manager of and we support clinical trials throughout the world for National Cancer Institute. And through that I could acquire insulin directly from our wholesaler. And having been a pharmacist in community pharmacy for many years. I also know that there's different wholesalers around sugar yet and I thought well, this would be a good opportunity to watch a variety of launch to see if we could get any detect any changes between lots a lot and different manufacturers to compare to to see if the insulin concentrations would be what would be expected and any other breakdown products that might be there from shipping and handling. Just as a what if type idea and in order to get a variety of lots in a fairly short period of time. I am from different wholesalers I know of other pharmacies here in Kansas City for my years of working with different people. And I arranged to pick up and have purchased some insulin from them and mph and regular our over the counter type insulins. You don't have to have a prescription for them, I could go buy them as a consumer and I which store is bought from different wholesalers. So I managed to collect over a period of time, the different lots and stored them in our refrigerator in the pharmacy till we got ready to move them to the laboratory for analytical work. And our refrigeration systems here are based under what they call Good Manufacturing Practices standards. And we have, which is better than most pharmacies have. We're monitoring our refrigeration and freezer temperatures 24 seven, so that we can tell whether it gets too hot or too cold to last a little better than average pharmacy as most pharmacies just check it twice a day with a thermometer and refrigerator, which should be good enough that we were trying to ensure that we didn't expose it to any unusual handling, once we had it in our hands,

Scott Benner 5:51
right. And when we stopped them think about this idea that this insolence manufactured somewhere that manufacturer keeps it cold, they ship it somewhere, that person has to keep it cold has to stay cold during the transportation process, it probably gets shipped again and again before it hits a pharmacy. Or maybe you have a mail order pharmacy that you get your your insulin farmer maybe you know, whatever, there's just there's so many leaps from the moment, it's manufactured to the moment you get at home in your refrigerator, which, you know, none of our refrigerators are probably even as close to being you know, perfect as, as you would hope, you know, as the pharmacy might be. But there's just a bunch of opportunities for it to get warmer, or to be stored at a temperature that's not optimal. Can you tell me when that happens? What happens to the insulin when it's not kept at the right temperature?

Alan Carter 6:45
Well, as it gets warmer, it breaks down on a fairly linear rate, which Lily in 2003 provided a comment showing it degrades at about 1% a day, if it's at room temperature 77.1% a month, which at room temperature is 77 degrees, but it's linear, the higher the temperature, the faster the degradation rate is, but it'll still have some activity to keep in refrigerator, it loses point 1% of activity per month. So refrigeration would be preferred. But the problem of insulin too is you keep it in refrigerator and it gets frozen. And then that's just as bad as being too hot. I'd even be worse in some cases, like in the NPH. If it freezes, it actually falls out of its suspension and becomes totally unpredictable. And a lot of activity would be and it won't look quite right when you try and mix it after it's been frozen. And I've had patients have their insulin is frozen, because it couldn't afford to buy more continue to use the insulin, sometimes for several months, and have their control just go completely out of whack. Because their insulin is only getting a small portion of his activity because it's been frozen first. So that's that may be more of a problem, a cheat.

Scott Benner 8:02
So there's this concentration of activity that the the insulin has. And as it breaks down, it loses its effectiveness. And and it's funny because I was just thinking about it getting warmer, but now you're talking about if it gets too cold, if it freezes, you have a similar if not worse issue. And so what did you because you and I spoke previously to this because we didn't know each other. And I reached out I told you that I really would like to shed more light on what you did and at the same time. My my my overarching concern is I believe that when people are managing their type one diabetes, sometimes the biggest mistake they make is they they sit around looking for reasons like something doesn't go exactly right. And they'll stare at a blood sugar of 250 for three hours trying to figure out like did I miss count the carbs that you know, what did I do wrong? And you know, part of what they think is maybe it's the insulin and by the time you go through this incredible checklist of things in the waiting, it's always sort of my idea like just more insulin, like if you're higher, just use more, you know, maybe the reasons important and we can figure it out down the road. But in the moment, I get scared that in the moment, people will get frozen with the fear of there's so many variables that they can't figure out what happened and they end up not doing anything. And so as much as I want to shed light on this, I don't want to scare people into thinking that this is one more thing for them to in their day to day moment to moment to be overwhelmed with and so I really do want to understand clearly what you guys learned so can you can you help me a little bit understand that what the what the paper is telling us because I'm not nearly smart enough to read it and make sense of it well, and

Alan Carter 9:41
and it's it is one of those things where you give yourself a dose of insulin and you expect a certain response and you start a new vile, good to monitor your sugars carefully for the first dose or two to make sure that it's Your body's responding to this particular lot the same way it did on a previous slide. And as insulin is in your care and in your pump and getting to body temperature, it may be slightly less effective over time as it's been for three days in the reservoir, before you change it out, so there may be a little bit there. But as long as it's losing potency, if you're using a pump system and continuous monitoring, you'll be able to increase your dose of insulin enough to offset the high blood sugar or alter your diet. And it's just when you use that first dose out of a new vial, it may be more potent than the one you just had for a variety of reasons are being handled. So again, most diabetes patients know that just by experience. And so to not panic, just if but that the other side of the coin is if you're doing everything, the way you've been prescribed, and you're following a same routine, and you get a number that doesn't make sense, and you don't know what you're sick. It's possible insulin is not as potent, as is what you expected it to be.

Scott Benner 11:09
Right. And that's something that we all assume and guess and everything but but what you guys did sort of proved it out, which is so so what did you learn that when you when you bought these different lots from the different distributors. But what came to what came to light,

Alan Carter 11:26
I learned that it looks like the insulin is handled very similar, but from promise you the next that that the supply chain may affect may affect the concentration of insulin that's active in the vial throughout the region, I mean, this is just a snapshot in the Midwest, you may have a completely different outcome and the east or west coast, north or south, it could vary from season as well. So but the average insulin, if it's a little lower and his potency, on average, your systems can adapt for that and you can increase the insulin dose, and you'll do just fine. It's just when you get a new vial, it's significantly more potent than the previous one you've been using. And that can be because you've used the vial too long, you've kept it around. For too many months after you opened it, you're going to potentially have a low blood sugar reading if you give yourself the same dose as you gave on a previous vial. And that's and there is no recognized method or an analytical lab to pull it out of the vial and check and see once in a while just to spot check to see how the supply chain has affected the concentration based on what it was when I left the manufacturer. There is no recognized method for that. And I think that needs to be standardized and agreed upon amongst everybody

Scott Benner 12:52
because you you know the retail side of it and what happens. And so all these steps plus it hits retail. And what ends up happening is you put this insulin in so many different people's hands. And when you leave it to their their best intention, it's their idea of what the best thing to do is and you're saying that that there needs to be rules in place that they have to follow. And this will keep the not only the standard level, but hopefully the quality of the insulin higher and more slow. And I

Alan Carter 13:21
would I would postulate that it's a good idea or the system to have a way of this spot checking product at the pharmacy level, at the end of the supply chain just before it reaches the patient just to make sure any drug is meeting his standard, the minimum amount the FDA says are supposed to have in the label. And his quality is assured because what we're running into is a global supply chain. And the global supply chain introduces even far more risky transportation factors potentially than what we currently face. And now that we're thinking of Amazon getting into distribution of drugs, and insulin could be one of those medications as they distribute cheaply and people need to afford their medication absolutely have to afford it. Well, they reach for the lowest cost possible, you have to make sure that you're the delivery of the drug product to the patient is beating the quality it should meet based on original FDA approved release standards.

Scott Benner 14:21
Yeah. And if you test along increments, so you're saying just you randomly pull a vial from a shipment and it gets tested on site. And if it reaches you at your step and it's not good, then maybe you know, the last step was the issue or whatever but it but at least it doesn't reach people. It's such an odd idea, right that this well intended medication leaves the manufacturer and that along the way, the idea is sort of hands thrown up in the air like well, if it gets to you good, it gets to good and if it doesn't, what are we going to do about it?

Alan Carter 14:49
And that's the that's the concern I've had because I've seen other medications that have what they call a narrow therapeutic range and was Human Being example. It brand name was work great. And we had people switch to the generic and they had issues with bleeding. And nobody could figure out why when I finally analyzed the generic version, and it was 101%, of what it labeled said, You're allowed, plus or minus 5% of that hundred percent labeling, so it was supposed to have 100 milligrams in it, you can have 105, or as little as 95 milligrams is still be considered to be accurately representing what's on the label. Oh, I had 101. And consistently a lot a lot, they did a great job of manufacturing, the brand name that 97 98% level on that little difference was enough to make people have a bleeding issue. So it can be that that close in that narrow and nobody's doing anything wrong. But if you throw in something that's, you know, affected by the supply chain, such as insulin and biologic products, then then we probably need to keep a little closer eye on on what the supply chain impact is to that particular medication because it can be detrimental. Yeah, that makes sense.

Scott Benner 16:08
No, it absolutely does. And it's there. You know, different people are with insulin trying to make different accomplishments like my daughter's blood sugar is she doesn't feel well, right now, she's got a head cold. And her blood, her blood sugar, I can see is 130. And in my heart that's high, and I'm trying to do something about it. But when you get down to these kind of low tolerances, where you're just talking about a couple of points one way or the other, it is very important for the insulin to react the way you're expecting it to. Especially if you're not trying to, you know, you don't want to cause a low. And at the same time, people who are less comfortable being you know, aggressive with the insulin, they're also in a space where the efficacy of the medication could be the difference between 50 and 100 points in these higher ranges. And then, you know, it's even more frightening to make these large boluses. at a higher range. When you can't expect you already, you know, you're already more insulin resistant when your blood sugar is higher to begin with. And now if you can, at least, at least hope that the insulins going to do somewhat near what you expect it to do. And right. I mean, I'll tell you this, that, you know, my daughter doesn't use, you know, we have, she uses an ami pod. So every three days, her reservoir gets changed out. And we fill the pot up to its capacity, which is 200 units. So when I open a new vial of insulin, my house is kept pretty standardly, right? between 68 and 70 degrees, it doesn't get much hotter, doesn't get much colder. Once we open a new vial of insulin, we don't actually ever put it back in the refrigerator. But it's probably gone in, you know, a couple of weeks. And I don't know that we've ever had an issue. I've never think about the insulin as being like an issue. But what do you think of that? Do you think I should be putting it back in the refrigerator? On the pot is, in my opinion, the very best insulin pump on the market. Arden has been using it for almost a decade now it feels like I don't know she was four years old. She's 13. Now that's almost a decade right? And we could not be happier. My daughter's a one C has been between 5.6 and 6.2 for four years. A huge part of that is the technology that we talk about here on the show the dexcom the Omni pod but all of the great adjustments that I make with Omni pod, all the ability I have to give her insulin in situations when other people's pumps have to be disconnected. None of that exists with Omni pod. We can keep Arden's insulin delivery where we want it. And that is how we stay in control of her blood sugar keeping it manageable. You don't I mean not out of control and those spikes and craziness I mean it happens sometimes it happens everybody but I'm talking about for the most part. The freedom that the Omni pod gives us is it's unmatched I don't see anybody else that can do it. I want you to go to my omnipod.com forward slash juice box gonna throw out a tiny bit of information when you do on the pod is going to send you out a free no obligation demo pod. You can try it on and see for yourself now there's there's nothing better than that. It's free that absolutely no obligation like I said nothing no reason not to there's no strings attached. No strings attached the tubes attached. I mean, you see what i'm saying right now? Give it a try. There's nothing to lose it doesn't cost you anything. And I think you might agree with me once you get it you say it. My omnipod.com forward slash juicebox manage your blood sugar the way RP does.

Do you think I should be putting it back in the refrigerator?

Alan Carter 19:47
No. Big Bill man you're also using an insolent analog and we did not use look at the insulin analogs and that should be the next step we look at to the the regular mph or the arm originally. Developed in the 80s analogs have been even when we don't have great information on what its stability is once opened, other than the manufacturer says it should be thrown away within 28 days. So there's some question there, maybe they are more stable. And then when you put it in a reservoir, your body temperature is 98.6, if you don't have a fever, and that could affect how they believe something is over three days, but doesn't appear to be an issue based on everybody's experience. So that that part of it, if you're doing it, that way, you're fine. The only thing I would, you know, anytime you open up a new vial, that's from a different law that you've had before, there is a slight chance that it will have either more or less potency, but if it's a little under it, or a little over, it should be fine. You're not going to have it crash. But if you're running really, really tight control there's some people want to do, then that change maybe enough to trigger a lower low than what you anticipate or a higher higher than what you anticipate based on your dose, because there may be some variance between those files.

Scott Benner 21:07
So it's definitely I'm sorry, okay, okay.

Alan Carter 21:09
But I just was thinking outside the box, if you had some way of testing that vial at home, to make sure that it is, you know, got intact. So there's some had some way of doing a test strip on it that might be helpful in making sure that you're assured that your insulin has not been frozen, or or been too hot at some point in time.

Scott Benner 21:29
Well, that's interesting. So you know, how you when you got the the regular mph in the lab, you know, what testing you did? Do you think a test trip is, is a is a feasible idea.

Alan Carter 21:40
It's, it's a interesting thought and idea, and we have some really cool technologies now, and I have a few friends and colleagues that have fought that might not be a bad approach to think about. So I believe there is some interest in at least the academic world to do you think I mean, so it's a challenge to see if you could find some way of creating a a home testing kit that will let you check once in a while your, your insulin concentration, just to make sure because if you get it in the mail, it could have been exposed to extremely high heat, or it could have been frozen. And you would know that if it had reached a room temperature or refrigeration temperature when you got it somewhere along the line, it might have been damaged. And you would know it nobody would know this wood vials are enclosed in cardboard boxes, and you don't see them until you open the box. Right.

Scott Benner 22:37
You know what I was just thinking? And maybe what you just said made me think is is the answer possibly that there's something in with the shipment, that is an indicator if you've left a range, I don't know if that would that would be if it's a if it's a monitorable. You know,

Alan Carter 22:54
there are temp track devices that we use when we ship products to various trials and things and are used when you have a temperature vertical product, and you can put it in the center of the box, and it will or near the center, and will give you the average temperature that that box has been exposed has inside of it over a period of time until you pull it out and and stop the the tracking. And you can download it onto a computer and see the graph on a Adobe Reader. It's very easy to do, they're not terribly cheap. And they tend to do it on large shipments. But it measures just like the monitors that we use in our refrigeration or anybody's refrigerator. It's the sensor is in one spot and it's giving you the average temperature for the whole refrigerator. Doesn't mean that one corner doesn't get below the temperature or above the temperature you want to set it for. Have you ever put anything in refrigerator and thinking Oh, it's it's fine. Go back a few days later and pull out is frozen,

Scott Benner 23:50
right? But not everything else refrigerators for us. But

Alan Carter 23:52
not everything's frozen refrigerator. So that happens and it could happen in a shipment too. If you've got a shipment of insulin is sitting too close to the cold pack and that cold pack happens to be too cold or the outside temperature is cold and older than anticipated during shipment, it's possible that that vial or that pin that's closest to the cold pack might partially freeze. Now the agitation of shipping and stuff like that should keep it somewhat mixed, but it may not. So this possible that a portion of it might get too cold or too hot, and the rest of the shipment temperature track would show that it stayed within the expected ranges that you need to keep it so those things could happen it'd be just a simple luck of the draw and it could be that our results on what we found were happened to just be vials that got excursions beyond the temperatures they should have been. And if we went back and tested the same did the same kind of test later on a different shipment. They may be just fine. You know

Scott Benner 24:54
what I'm realizing here is the the penguins have already answered our question. You just have to find a way To mechanically duplicated, have you ever seen penguins keep warm and they create that kind of that circle where we're the one in the middle and they walk in and out? Yeah, they keep. That's like Joe Allen, just go figure that out.

Alan Carter 25:14
Okay, yeah, so it's, uh, yeah, we don't want to put any kind of panic into anybody. It's just an awareness, people need to be aware of what might be going on. And I've had patients complain that the insulin that they got from the pharmacy just didn't give them the results that they got from the previous dispensing, and they get a new vial or a new box of pens, and their control shows back up. I've had two patients in the last 15 years that can actually show me their diaries that included their food intake and exercise that I haven't changed anything except I changed, I got the new insulin. And my control started to slide out of control on I was having to use more insulin or are it wasn't uniform and how I was seeing and I didn't change anything else. We think it was useful, and I'm playing well, and you must have been sick, or you mentioned the medication you try any herbal supplements. Did you have any alcohol to drink? Did you know I didn't change anything except my insulin. But we as clinicians, tend to think well, that there's too many variables here. And it could never be the insulin, well, that may be the insulin. And we don't just need to discard that information when it's reported, and the patient may be telling the truth. So they didn't do anything different. And maybe it is the insulin. So we'd like to have some way of uniformly determining whether it was the insulin or not, because I hate just guessing. I don't like to guess I'd like to know,

Scott Benner 26:41
it's worth knowing. And it's worth, it's worth trying to understand that that's for certain Do you think do you think that from the pharmaceutical? And do you think that that is just the cost of doing business? Once in a while you're going to get a vial? It's not as good as the other ones? And do you think that there's just nothing they can do about? How would you like to be able to see your child's blood sugar 24 hours a day whenever you want to? Sounds good. When they're at school at a friend's house it asleep over in the backyard playing baseball, playing football? How does that sound? Do you have an iPhone or an Android phone? Because it works with both? Hmm?

Unknown Speaker 27:15
You like that?

Scott Benner 27:16
I know you do. How about this? forget to share for a second, how would you like to know that your child's blood sugar is starting to creep up or beginning to fall? Or oh my gosh, falling really quickly or rising really fast. You thought you did the right Pre-Bolus at lunch, but all of a sudden bang, it's your blood sugar's flying up, you would know that without an Dexcom. If you're just testing, there'd be no way to see that Dexcom is going to tell you right away, hey, you've told me to let you know when you've gone above this blood sugar. And you are and by the way, it's happening quickly. So here's a an alert that tells you not only are you going up, but you're going up fast. This gives you an opportunity to jump right back into the game and make an adjustment. You take a spike that was gonna go to 300. And you stop it. It's amazing. This is information you have to have. This is the kind of information I use constantly all day when you hear me talking about the things that I talked about Pre-Bolus garden for lunch, eating carb, heavy meals, all that stuff is made possible with on the pod index calm. To find out more, please go to dexcom.com forward slash juice box, or hit the link in your show notes and get started today. If you're not using a CGM, I can't I can't stress enough that I think you should be. Alright, listen, let's finish up here with Alan. And then let's get you back to your life. All right. But don't forget that comment on the pod this week, use the links find out more.

Alan Carter 28:49
I think the manufacturers are concerned because what they want to ensure that you get product is good. I mean that that's how they make their living. They can't be bad at it. Because it threatens their entire business model, you have to depend on them to be correct. And they expect to be correct all the time. But they also have to realize and they do realize that they can't control the shipping systems very well as to beyond their capability. And, and understandably so. And so and again, the cost of making insulin is not cheap. And cost of shipping. Insulin is not necessarily cheap. And if we try to make it more complicated, it becomes more expensive, which is not great for anybody. So how do we how do we practice not without causing a lot of problems. But I think the information should be at least somehow available to the public that they need to think about that Be careful how they keep their insulin and also the shippers and manufacturers need to be careful how their instrument is shipped and handled. But we need some uniform. The biggest challenge we have is trying to find a recognized method to test it and there isn't any And manufacturers haven't shared that information because that's considered proprietary information. They don't want to give that away. But how do we how do we verify this? How do we double check and make sure that's true? That's what I'd like to see come out of this is that we all agree on all this method for a spot check is going to be replicable, every repeatable every time and we can get the results that we can depend on being this is what actually measurement is at this point. And then we can do a spot check once in a while to make sure and fine tune the delivery systems so that maybe we keep the insulin under better control and possibly it is rotating your, your package. So many times during shipment how we do that, I'm not sure. Or maybe by insulating the container a little differently with the cold packs. So maybe we don't get a cold spot in it. Maybe that's something we need to look at. But we need to be able to track the temperature from the moment the manufacturer puts it into while until the pharmacy dispenses it to the patient. And then the patient then can, hopefully, ideally would be able to continue to monitor that vitals temperature changes while they have it. Because things happen when in life happens. You go to on a trip and you use a refrigerator in a hotel and it raises your insulin, oh my gosh, what do I do, I always got to buy some more insulin somewhere. Because you don't know what his activity is. Or you go take a trip and you forget and leave your your thing in the car for 100 degrees outside or some reason that cars temperature gets to 180 inside, which is not unusual in certain parts of the country. Did I destroy the insulin I have on reserve in the car? Those things happen all the time every day? How do we help you determine whether you got to run out and find another bottle insulin and don't have to buy a $500 box of insulin wrenches or pins to replace the one that just got inadvertently damaged? Because accident happened?

Scott Benner 32:00
I always think that I've had this this thought out loud a couple of times. And I've actually spoken to somebody in the pharma company once and said this. I don't know why they don't just and maybe there's a million business reasons why this idea is terrible. I have no idea. But you know, people get mailed or insulin nowadays, why doesn't the manufacturer just get in the business of being that the middleman and moving the insulin directly from manufacturer to the home?

Alan Carter 32:26
I mean, you know, or manufactured likely to the pharmacy so the patient can pick it up. Right. Right. Right. And and I guess in Europe, that's the way it's done. But the interesting, one of the interesting comments has come out of this whole thing was is diabetes management experts are thinking, you know, this just can't be right. And I understand why they would think that way. But I've had response from people that have used insulin. And in Europe, they use a method where it's a pool purchase across Europe, and it's called parallel purchasing. And yes, they get it from the pharmacy. But that supply may have routed through the Eastern Bloc countries where it was originally sent to at a much lower price. And labeled in that language, then they'll re label it in English or Spanish or Italian and ship it into those countries or their citizens use. And it's picked up at the pharmacy sold the insulin has been shipped to one country as a low price, because that country is a hasn't got an economy, they can afford inexpensive insulin. And they turn around and then repackage it and ship it into other countries in Europe as a parallel purchase, though that that country also enjoys a little overpriced. And there's been one report to me that by an individual saying I couldn't get control of my insulin or my diabetes. When this started happening, as a manufacturer to check the stuff I said, well looks like it's within spec. But I was still without control. The government program allowed me to directly get it from the manufacturer, to my pharmacy or to me, and my control returned. But it already had some damage done neuropathies have started to show up because it took a couple years to figure out what was going on. And so that person suspects that that particular delivery supply chain is bad for the quality of insurance that they've got, and they had some adverse outcomes because of that. So there's that's just one anecdotal report, but that's some of the feedback we're getting patients is that the supply chain just seemed to impact the quality of the insulin and it needs to be improved. Taking care of your diabetes is already it's already hard enough like by the variable,

Scott Benner 34:47
but they're big, but the thing to go through that entire process and the insulin you're using isn't effective is just by that is it makes it feel like the The whole thing's just a waste of time and a disaster,

Alan Carter 35:02
you know, and you don't want to do that, right. But at the same time, it's always, I grew up in Missouri, and I work in Missouri, Missouri is what's called the show me state. You can tell me everything's good. But you got to show me once in a while, that it'd be every time but at least I want definitive proof that, that I'm getting what I'm getting, and what's being discussed is true. And so that's kind of what I feel here is this, we just need to check once in a while and have some mechanism which everybody agrees on is a good way of doing it. And and look at the insolent quality periodically, doesn't have to be every lot or every day, but just once in a while check in and then come up with a better way of delivering it so that we can help ensure that it's staying consistent. When it reaches the individual trying to use it. Now, once the individual gets it, it'd be nice if you could monitor it to from home and our ways to do that as well. But because that adds another wrinkle, and but not everybody can afford to do that. Diabetes is expensive. disease to manage. And it's a lifetime. Lifetime lifestyle. And a lot of people can't afford it. To do it properly. That's why we're seeing some people revert back to the mph and regulars because you can buy mph and regular at Walmart or Sam's Club for $25. a vial. That's pretty cheap. And we used to manage people successfully using mph and regular before the analogs came out. It's not the best method day. But if that's all you can afford, that's what you get to go with. Yeah,

Scott Benner 36:34
right. Well, so the said what you've done so far with, you know, tracking the mph in the regular, do you have any plans to do it with the analogs with the Nova Nova logs,

Alan Carter 36:44
and we'd love to get a group of people together to determine the best method to do this and an a and a usable, workable protocol to follow that mimics real world situations, which is what we tried to do with the way we collected the vials, we tried to mimic what you would do if you're a patient about in the pharmacy, or we've got to dispense to you and you got a 90 day supply, and you've kept it in your refrigerator at home. And so in a variety of different lots that you might get over a period of time we tried to duplicate that. But to take that type of concept that we're using a real world snapshot periodically to look at it and using a an agreed upon analytical method to determine how much insulin is in the pan or the while and as much as the intact insolence. How much is the breakdown products probably would be necessary to do a a test to see what the impact is in a person through controlled trial of what to call insulin clamp studies using that same lot to see how well it up what effect it might be on raising or lowering your blood sugar. To do a comprehensive look, at least on occasion, just as an insurance policy I like to think of it is just we got speed limits on highways. Does everybody follow the speed limit? Because there's nobody watching by looking to see if you know the sheriff's two miles down the road and running the radar trap going to slow down well maybe that's what we need to just once in a while check an FB everything this so that the supply chain is being least monitored a little bit. Right now there is no monitoring of the supply chain that I'm aware of.

Scott Benner 38:30
Right. And and in the supply chain if you're if you're one of these steps along the way. And like you said, no one's watching, there's no real onus on you if you want to cheap out if you want to be less safe with it, because once it gets that it's kick the can once it's that far down the road, it's off your shoulders, nobody can prove it was you so

Alan Carter 38:49
and that's why the manufacturers are concerned too is because if it's if it's not quality, and they have to take it back then it's a loss. It's kind of like a counterfeit $20 bill. If if you're caught with a counterfeit $20 bill, you eat the loss, it's it's your problem. There's nobody to pass it back to and manufacturers I think are concerned that they would be forced to take stuff back that they have no control over. It's not their fault that it got exposed to bad temperature. So sort of a What I don't know is, is good for me. If I know too much, then it might be bad for me. And it's not just the manufacturers, whoever happens to have possession of the insulin.

Scott Benner 39:24
It's interesting when you really stop and break it down like this and think about it. There's no it's easy to be upset. Like when you hear something like this, I think people's minds go right to the pharma company, right. Like that's their fault, but it's his fault is is spread out all over the place and maybe not even, it might not even be fault. There could be there could be a link in your supply chain that feels like they're doing everything right and they're not and they don't even know and that's slim, right?

Alan Carter 39:53
It's correct and it is and I we definitely do not blame pharma for this. I mean, it's possible Really remotely possible with somebody who's running really poor quality control? But that's, that's just impossible to believe or even think. But the reality is the supply chain is really the the weakest link in the chain is the supply chain itself, and how do we look at that and address it and correct anything to reduce the risk, you're not gonna eliminate the risk just to reduce the risk that the insulin arrives in your hands as a patient in the concentration that you expect it to be. So that you can use it and rely on its activity. And understanding that there's going to be absorption differences, day to day based on your site of injection, there's going to be differences in your activity and your caloric burn or day to day, our our there are variances in diabetes that you just cannot address. But if we know the insulin is within a certain range of potency, when you get it and you know how to take care of it when you're at home. And you're monitoring that too, then you've eliminated just

Scott Benner 41:03
one last factor. No, yeah, you will, you know, I mean, if we're being fair sitting here talking like that, the pharmaceutical companies have the power, they're the ones paying the shippers, they can they could put constraints on them and say, Look, you have to do this, this and this, or you don't work for us anymore. And I'm assuming that's a fairly large account that these people would not want to lose. And so I you would think you could strong arm the shippers to do the right thing? Because that is once you do that you raise the cost. Yes. And are already complaining about the cost now,

Alan Carter 41:38
right? Oh, that's the other side of the coin is is to do it right? On a cost more money? Mm hmm.

Scott Benner 41:45
Yes. So we're stuck in a perpetual circle of well of what was good enough and at what price?

Alan Carter 41:52
Right. And that's what we like to dis determine what's good enough. And right now it doesn't look like based on art data, it may not be good enough, can we improve that without making it ridiculously expensive. That's the goal. And could be used now with technology we could get. They could put a temperature tracking device that would work either on every box, or in every shrink wrap group of insulin because they usually come in a package 10 vials in a shrink wrapped package. If you buy enough of them. That's all it'll show up for you to help in shipping and packing. And have a monitor at least in that level. And how big a level Do you keep keep that monitor and monitor it from A to Z point A to point z. And ideally, if you could move that monitoring capability to to the patients, and then it would help them keep track of their insulin temperatures during everyday life.

Scott Benner 42:53
So what did you do when you when you finished the paper? Did you pass it on to industry? or What was your you assume he know that it exists? When

Alan Carter 43:01
we ran this, we were trying to see what other differences we could find is one we weren't looking for a concentration insulin specifically, we want to see how much different the two biosimilar products because they're not technically while similars. But in reality, that's what they are they NPH and regular been made for years by two different companies. And they're made different ways. But they're supposed to be human insulin at 100 units per milliliter concentration. So we thought, okay, it's human insulin. And there may be slight differences in what else we might find in the vials. Let's look but the very first step is to identify the insulin, because we have a USB standard to do that with and we can make up a USB value of 100 units per mil solution treat it the same way we do the insulin withdrawal from the vials for injecting in a machine LCMS device to measure it, or we should have a known standard and then measure the house against it. And we got the data is like what happened here doesn't match what we expected except one wild came really close to what we thought our target should be 94.2 that's, that's within a sneeze of being exactly what it says is supposed to be on the vial. So we were trying to figure out what we might have done wrong. And as we tried to dig into that data, we found it there is no documented way to look at insulin in a vial to check its true concentration that we can find manufacturers have it but they don't want to share that information. And then we tried to figure out who would be interested in looking at this information to see what it might be. And really it was kind of like a hot potato. Nobody wanted to touch it. And I understand I mean, it's so controversial. You don't want to blow things up without some kind of way of determining it. But since there is no documented way that we know of to cross check all this stuff. It's just original data. And we'd like to see it move forward with additional testing, using methods that people agree on is the best way of doing it. And checking the analogs, probably next, but we need to make sure we're all on the same page before we start down that path. And finding somebody to fund that has been a challenge. And as it is a hot potato, nobody really wants to own this.

Scott Benner 45:23
Yeah, who wants to prove that that might not that that might be true, also, that it's, it doesn't benefit anybody, anybody who you can get money from to do the study? That's for certain. Yeah. Well, Alan, I appreciate you coming on and explaining this to me, because I saw, I saw your paper, it came across my feet a couple of times. And I looked at it and I thought, Oh, that is really interesting. But then I actually started getting notes one day from a bunch of people who were like, Can you find out more about this? And I said, Well, I can try. So I appreciate you responding so quickly. And getting on so quick. We're actually going to put this up next week so that people can can listen to it and try to understand better, is there a place I can point them to get the full paper that they can read? Or is it available online as a full text, it's

Alan Carter 46:09
available as an abstract online, it does journal diabetes, science and technology. And that requires a subscription. For individuals who want to see it, I can release it on a person to person basis, which is kind of how I got started out in the general public. And I just can't release it in general, because that violates the journals agreement. So I would be willing to release it to individuals if they want to read the entire paper, which is the idea that this further use their personal use not for general release to everybody. And you could reach me at my email addresses on that contact information. Sure, I'll put it in the show notes show

Scott Benner 46:55
anybody who is anybody who really wants to dig into the into the text, there'll be a link in the show notes, you can contact Alan, he'll, he'll send it out for you. And, and as long as

Alan Carter 47:04
you don't share it in public, it'll be up. I see this as an issue that's going to take all of us to solve. It's, it's not, it's not something that one person can solve, we just need to find the best way.

Scott Benner 47:16
So at the end consumer, if they want to voice their concern, who do you think they pointed at?

Alan Carter 47:23
And well, my guess would be the FDA would be the first official group to point their concerns to and ask them if there is a way of, of doing a better check of the supply chain to ensure that the product received at the pharmacies are good, and then periodically at the dispensing point of the patient to making sure that what the pharmacies because we got no way in the pharmacy level to figure out whether it's good. We just have to assume it is just like everybody else.

Scott Benner 47:55
whole conversation and yeah, discretion. Yeah, this whole conversation just makes me think over and over again about the insulin that we're sending to third world countries that help like what, what shape is that showing up in?

Alan Carter 48:08
Well, and the other concern is, is when you get to reimportation drugs. And that's a big issue, a Canadian Canadian drug supply. And we can you can do that. But the FDA says that's not safe. This is why it's not safe as it can go to a third world country. And this has happened before, and it gets rerouted back into the general supply and then sent back into the United States or into Europe or into Australia that was never intended to reach here and who knows where it went and how much sat there. And that's what you get into with a global supply chain. You need some way to monitor the quality of that product when it reaches the end consumer.

Scott Benner 48:42
Okay. All right. So well, I wish you luck, getting funding to do it. To continue the work, I think it's really important. And I wanted to thank you very much for shining a light on it. It's obviously something we've always all this always a thought, but it's very interesting to see somebody to prove it out in the real world. So thank you very much.

Alan Carter 49:03
I thank you for inviting me to be on your program. And if there's anything I can do to help you or anyone in the diabetes community, please feel free to reach out.

Scott Benner 49:13
Thanks so much, Alan. Thank you. Dexcom Thank you, Omni pod. Thank you t you the listener appreciate every one of you. I really do. Congratulations to Amy and Jennifer for winning my last giveaway. It was a big grab bag full of bold with insulin stuff t shirts and stickers and magnets and everything. Congratulations guys. Your gifts are coming soon. Also, stay tuned. There's a lot of new news a lot of new news coming from Omni pod and we're gonna have some people on for Omni pod to talk about it in the coming weeks. We have a ton of great interviews coming up and there's always you know timely stuff like today with Alan which will slip in you guys. If you're not subscribed, please subscribe in your podcast catcher app, whichever app you're using, hit subscribe. That way you don't have to count on you know me putting it on social media and it is actually one My dream is where you guys all subscribe and I no longer have to put anything on social media which would be a wonderful, wonderful respite for me. So if you want to do something nice for me just subscribe, you make less work for me on the other side. Again, the show continues to grow. It's doing fantastic. And it does that because you guys are sharing. So thank you very much and please continue to let other people know about the Juicebox Podcast. I'll see you guys next week.

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