Scott Benner 9/13/21 Scott Benner 9/13/21

#541 Dr. Saleh Adi

Dr. Saleh Adi is a pediatric endocrinologist and the Co-Founder and Chief Medical Advisor at Tidepool.org. Dr. Adi speaks with Scott about insulin delivering algorithms and type 1 diabetes Management ideas.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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 friends, and welcome to Episode 541 of the Juicebox Podcast.

For this episode, I'd like to give credit where credit is due. Steven is a listener who sent me an email. And at the very end of it, it said, Hey, I have a guest suggestion for you. You should have Dr. salia. d on. I did a little research and I found out that the good doctor is a pediatric endocrinologist who is also the co founder of tide pool and their chief medical adviser. So I was like, all right, that sounds like a good idea. But what happened next was nothing short of absolutely inspiring. This conversation is one of my favorites that I've ever had about the management of diabetes, and I hope you enjoy it. Please remember, while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before you make any changes to your health care plan. or become bold with insulin. This conversation is going to break right down the middle almost the first half, we're going to talk a lot about algorithms and the future of them with Type One Diabetes. And in the second half, we're going to talk about Basal insulin, and ideas around management just listen to the whole thing. It's a Master's class.

This show is sponsored today by the glucagon that my daughter carries g vo hypo Penn. Find out more at G Vogue glucagon.com forward slash juice box. The episode is also sponsored by the Dexcom g six continuous glucose monitor, you can get started or Find out more at Dexcom comm forward slash juicebox. There are links to all the advertisers in the show notes of your podcast player. We're at Juicebox podcast.com.

Dr. Saleh Adi 2:02
My name is Saleh Adi and I am a pediatric endocrinologist I spent most of my career taking care of children with diabetes, until very recently, a couple of years ago when I decided that it was time for me to retire. And I left my position at UCSF and I have been just hanging out having fun and volunteer into a number of organizations that I've always done before, mostly related to diabetes in children. And here I am so happy to be involved and continue to be in the community this lovely, wonderful community to be part of.

Scott Benner 2:41
It's excellent. How long did you practice?

Dr. Saleh Adi 2:45
I graduated from UCSF program back in 1997. So that's really when I finished training. And first, I was mostly in the lab doing basic science research until about 2003. That's when I returned to San Francisco and focused my career, refocused my career on clinical work with children with diabetes. And I left the basic science world.

Scott Benner 3:15
What What made you What made you switch.

Dr. Saleh Adi 3:20
I had to make a decision. It's either basic science research or clinical work. And I couldn't do both at the same time, I loved my basic science research area. It was it was wonderful. It was a lot of fun, because I thought that this was something that I wanted to do for a living. But I always miss seeing patients and taking care of patients and interacting with human beings. And I realized after trying for a few years that it's really impossible to do both at the same time, you kind of have to choose either 120% research or 120% clinical, otherwise, you can't really get it done doing 50% here 50% there or a combination. And I had to make a decision and I gave up my lab and decided to be a clinician.

Scott Benner 4:08
Well, there's at least one person who's really glad that you did and it's a person who wrote to me and said you have to have salad on the on the program just to talk about basil insulin and I was like, very specifically was such a specific email. So I said big and I went back and forth with the person they said I'm telling you just have him on and I said okay, I'm gonna believe you. Now you're involved with tide pools still, is that right?

Dr. Saleh Adi 4:39
Correct. Correct. I'm still on the board the tide pool and and Chief Medical advisor. And I know just about everyone who works at tide pool and it's been it's been a lovely and fun journey since we established dipole seven, eight years ago.

Scott Benner 4:55
Well, well, you know, maybe I'll dig into it like this. Maybe. Do you remember The moment when tide pool said, we're going to try to bring an algorithm to market through the FDA.

Dr. Saleh Adi 5:07
Ah, yes, yes, I remember that very vividly. It was a board meeting when we discussed it for the very first time, and everyone was so excited about the idea, such a novel idea, and it was very timely. You know, the loop project has been around as a DIY loop people, you know, download the software and the hardware together and make it work. And it had been for such a long time. So controversial. Is it a good thing? Is it a bad thing? It works clearly works for the patients. But how do we make it official? How do we make it safe? And how do we get the stamp of approval from the authorities? I think there was at that time, it was highly controversial. And the FDA was sort of like, we really like this thing, but we can't allow it to just continue to go on like this. It's so non official, and in the hands of people who don't know what they're doing, it can be not so safe. I don't want to say dangerous, because it's probably okay. But the FDA eventually sort of decided to, well, let's take a different route. And I think in combination between the FDA, and jdrf, and the Helmsley Charitable Trust, they decided that, well, DIY loop is a nonprofit, open source project for the good of the community. title is an nonprofit, open source project for the good of the community. That sounds like maybe we can do something together. And they basically approach tight balls and said, Would you work on this project, to make it more formal and get the official approval, and do all the things that we need to do to make sure that it's safe and efficient and effective, and get it done with an FDA approval? And it was like an aha moment, like, of course, this is what we do. So let's pivot and change direction and make sure that we're going to be able to do this right. And that was a moment when it all started.

Scott Benner 7:20
I have a question. And this will I hope, it doesn't sound like I'm I don't even know the word here. How it I don't mean that if it sounds bit poor, I just don't understand this one aspect of it. How do you take something that's floating around on the internet? And take it and say, we're going to package this up and move it through the FDA? Like? Well, I guess the question is, why is that? Okay? It's just because it's it's open source? Is that the idea?

Dr. Saleh Adi 7:49
Well, because it's open source, that means it's available for anyone to take it, we don't have to pay for our task, a tight pool was to actually look at it, look at the software itself, and make sure that there are no bugs, make sure that it's rigorously tested, both technically, as well as clinically. Now, doing it clinically is a monumental task, like the traditional route would be? Well, let's take the software. And let's go and design a randomized control trial, where patients can get enrolled in the project and get this DIY loop software or patients and others randomly chosen to not get the software or that they would get another different software, and do the comparisons, you know, do the study, obviously, collecting all of the data, and then do the comparisons looking at the data back and see. Was this safe? Was it as safe as the other projects out there the other closed loop systems? Was it as effective as other closed loop systems? Or was it better or was it worse? And and doing it in a in a randomized control trial in a very efficient in a very official way? That would have taken a long, long time. And the the way we have chosen to do with that title is there are a lot of people who are using it and officially out there on their own. So why don't we end and they've been using it for years. So we have a ton of data collected on them already. It's just not done in a randomized control manner. But there's a lot of data out there that has been generated for years in real people living their real life. So why don't we just go and look at their data if we can, and enroll them in the study and continue to look at the data moving forward for those who are going to start on this system and then see what we get. We know how to look at data We know how to collect data and see whether there's any evidence of that the system is unsafe, or if there's any evidence that it's harmful. Or if there's any evidence that it's actually really good. And we can show the data. And that's kind of where it all started. And we collected the data, the observational study, and we crunched all the numbers. And I shouldn't say we, I think type poll, I really don't take much credit for it, they've done that tremendous job, and submitted it to the FDA and see if the FDA will be happy with all with this sort of non traditional pathway of looking at the safety of a project of a product. And if the if it's acceptable enough to demonstrate safety and efficacy, because at the end of the day, that's what the FDA wants to see. Is that Is it safe, that if we give it to the people to whom it was intended for, that it's going to be safe, if they use it the way it is right now. And is it effective? Does it really do what people claim it does? When we are clearly looking at data and not based on just anecdotal experiences? I see. And we'll wait to see what the FDA thinks about

Scott Benner 11:21
it's an amazing idea to just say to them, Look, I know, this is usually how it goes. But we have all this data, why don't you let us look at it and send it to you and see if you can't be okay with it. And exactly, it really is a fascinatingly simple, you know, you just don't hear too many people approach things in a common sense way, usually. So it's exciting to hear someone look at something and say, here's, here's the common sense of this here. Why don't we do this, I'll have to tell you that my daughter is 17. She's been using loop for maybe a year and a half or two years now. And I mean, she was doing incredibly well, prior, my daughter's a onesies been between five, two and six to for like eight years. But the amount of sleep that we got back exactly. With loop just at all, and we're using an auto Bolus branch. So it's a it's really wonderful. I mean, it's, it's, I haven't seen all of them, obviously. And on the pod fives not out yet. But this is the best one I've seen so far is is is this exact thing that we're using right now. Also, the idea that you that you kind of came to an agreement with on the pod, I mean, the idea that one day on the pod five can either run its algorithm, or yours is brilliant as well, in offering choice to people. I just think there's a lot of open mindedness going on that, that I like saying,

Dr. Saleh Adi 12:50
I like that term, I think the open mindedness, which would be if we were to coin an official term would be interoperability, if you will. So that was something that typos. And I get the credit to Howard and Brandon, the leaders in title of COVID, adopting that concept from the very beginning, from the very early days, it's just like, we have to open up the space of diabetes and, and get rid of all these silos of every company using only their devices and their software. It has to be open so that people can have a choice, which prompted they want to use which CGM do they want to use which software do they want to use, and put an end, put a combinations together, you don't have to buy all of your kitchen equipments from a single manufacturer, with a single brand you like this oven, you like that refrigerator, in that freezer, etc, you can put it together and you can work together. And this is the same concept. And in you know, I'll give the credit to the FDA, who will really was saying, We love the idea as well. And we want to encourage that. So now it's become a very common thing to ask for it just like when you as a manufacturer, when you create a product, how interoperable it is. And it's desirable to be very interoperable and open to other companies and other softwares to work with. And that also was something that jdrf pushed for very, very strongly as well.

Scott Benner 14:26
Yeah, I think that if you're not, if you're not paying attention, you might think of it as I enjoy this pump over this pump. And that's what makes this my choice. But you have to see that moving forward. You're going to want to choose between algorithms like this, the hardware is one thing but the operating system, you're going to want some impact on to so imagine if you really loved Medtronic operating system, but you wanted to wear it on the pot or you know, I mean, I realized it's probably not going to work like that between companies. But this is that idea. Like you get it on the pod because you like it you get on the pod five and you say I really want to try tide pool. And you can like it mean open minus from the FDA from tide pool, I think on the pod to being a privately held company saying, Yeah, well, let's do this like, that's there's a lot of exciting things in here. And I think people with diabetes are going to recognize in the next handful of years and beyond that the algorithms are going to be as valuable as anything else.

Dr. Saleh Adi 15:24
Absolutely. And the algorithm really is the biggest difference, I think that the mechanics of the hardware are more or less for the comfort and the and with what it's like, you know, what I'm comfortable with. And it's the it's the human factor of the hardware that attracts certain populations, certain people, but also the software, I think it's even more important, because software algorithms with all of these closed loop systems are different from each other, they are different enough, that in my opinion, my humble opinion, that that a certain software algorithm isn't going to work for every patient with Type One Diabetes. It depends on how much insulin they take, it depends on how how much beta cell function they have, it depends on how old they are. It depends on their lifestyle, it depends if they are, I think that an algorithm that's going to work really well, for a young adult who eats three times a day very distinct meals, is not may or may not work for a teenager who eats 16 times a day, and eat five grams snack here, and 12 grams snack there, and 128 grams, you know, breakfast, it may or may not work. But and the same thing, if it works for that teenager, who has completely unscheduled bursts of activities and food and behavior may also not be the best algorithm for a two year old infant who has type one diabetes, that's a whole different animal dealing with type one diabetes in a toddler versus an infant versus a young child versus an adolescent versus a young adult, versus even an older person who's like 60 7080 year old with Type One Diabetes, those are very different people. And we really have to approach them differently. And why I think we have to keep that in mind is that not all algorithms for closed loop systems are going to work for every single person with diabetes. Some of them will work better for others, they may work fine and be safe. And I think it may be more, they may be more effective for different populations of people would they be

Scott Benner 17:49
I found that there's a learning curve to I'm going to use the wrong word here. Because I don't mean it to sound like this. But you have to sort of manipulate what the algorithm wants to do sometimes. And sure, and you can make it fit you. If you understand the bigger picture. Surely, no, you definitely have to and for my daughter, you definitely have to Pre-Bolus food. If you miss on the Bolus, you can't lay back and just say, Oh, the algorithm will fix this because maybe six hours later, your blood sugar will come back down again, you have to be willing to go back at it. And then recognize when to let the algorithm start taking basil away again, like there's there's little tricks to do. I think that's where people have to learn on their own how to do it. But I'm saying that away from food, and away from an active Bolus. There's nothing better than an algorithm like this, the ability at a low number is is astonishing the ability to stop a really frightening low, I don't know that my daughter's blood sugar has gone under 50 in two years. Like it, you know, we've had, we've had times where you're like, Oh, I know this happened. But you but you think back to prior to the algorithm, a 50 would have turned into a 30. In a situation like that, then you go back and look at the data and see that for the past 90 minutes, this thing has been trying to stop this low. And I for people who have not lived long with diabetes, you might not know it, you know, for people who weren't born 20 years ago, you might not know it, but everybody needs to understand that in my opinion, this is the way to go. But settings are still King, no matter what like if your settings aren't right. You might as well be doing it blindfolded with a with an old rusty needle like it you have to have your settings right.

Dr. Saleh Adi 19:36
Yeah, good. I agree with you more. And I would add a couple of things. One is you know, Scott, I think you know, I totally agree with what you said is that you need to understand how the algorithm works. And not to the details over over the software engineer can level the you know, understanding but at least know what it's trying to do. The more you know, the more you understand how the software is how the algorithm is thinking, the more effective you can make it by manipulating certain things, not necessarily manipulating the code. Again, that's, you know, let's not go there. But more like, you know, thinking along the same lines that the algorithm is thinking. Just like when you're dealing with a child, you can have just to think, the same way that child is thinking. And you can have a really good relationship if you do that. And the same thing for it for a soccer algorithm, you can make it work much better if you know how it works, and know which buttons you need to turn left to right, to make things better. But also understanding that your manipulations can make can make an algorithm work much better. But it can also, in terms interfere with its function to be 100%. Effective? Yes. So you really need to know what what are you doing to make it better? And what are you doing that can potentially make it worse? And that effectiveness of you know, not getting down to 50 for the last two years, if you don't know what you're doing, you might actually prevent it from being that effective.

Scott Benner 21:22
Yeah, it's 100%. True, as as easily as you can assist it, you can fight against it. And exactly when you start fighting against it, it's making decisions based off of things you've told it, and then you're changing the game, but it's still doing what you told it like you can't, you can't just randomly throw in a couple of units of insulin and not somehow explain to the algorithm that this is because of I mismatched my carbs. It's one of the things that that makes loop, I think really great is the little stuff, like being able to go back to a Bolus from 90 minutes ago and say, You know what, I told that thing, it was 45. But it turns out, this is 52 carbs. Like that kind of stuff is huge. We have got it's brilliant. Yeah, we have a series of episodes in the podcast called Fox in the loop house that I think you might really enjoy. Where we talk about how to, you know how to be Dr. Frankenstein a little bit with with the algorithm I am. I have to say I'm super excited to see on the pod five. I know it's gonna work differently than loop. But I do want to understand it. And I want to try to get to the point where I'm a good tactician with that as well. But can I can I ask you a question before we move forward a little bit and talk about stuff? If you don't? If you don't know, you don't know. But I keep thinking. You said something earlier in the like when you almost came on, like the FDA said they couldn't let this thing go on. Meaning like an algorithm that just lives out in the in the world that's giving people insulin, do you think they're going to come after the DIY DIY loop at some point and try to try to scuttle it somehow?

Dr. Saleh Adi 23:05
I think that, you know, again, I think that if they wanted to do that they would have done that years ago. And the fact that they're working together with jdrf and Helmsley and title and the community to make it safe is like they don't want to go after anybody. They want this to actually work and be safe, so that everyone can have it. That's good, not just not just the, you know, the elite software engineers and mathematicians who want to, you know, grab this and, and put things together. They want everyone to benefit from it. Otherwise, we wouldn't be doing it.

Scott Benner 23:43
Right now. It's it's an interesting topic, because I know a lot of people use it, you know, when you consider that it's just something that exists out in the ether. But, you know, when you pull that up against how many people are using insulin, really, statistically, no one's using loop. You can compare it to how many people need insulin. So if you can get it into hands that way, I mean, I know very little about type two diabetes, but it seems to me if you're insulin dependent type two, an algorithm would be genius for you. And

Dr. Saleh Adi 24:16
yes, yes. But I have to say, Scott. It's it's not a bad thing. That loop is not so widely used currently, as it as it is in its current form. Because I do think that it's not for everyone. Like you hinted at, which is like, you really need to know what you're doing. Yeah. You need to put the pieces together. You need to do it right. And then you need to have an understanding of how the algorithm works. Because because you really you do need to make sure that you're not interfering with You're not going to interfere with its performance because you can, because by design loop was designed to allow for a lot of things that the patients can the user can manipulate. And for a good reason, it was a clever design. But there's so many things you can manipulate that if you don't know what you're doing, you're actually going to make it not effective and even unsafe, if you go far enough. So I think it's a it's a good thing. And that's what I'm excited about his title is trying to make sure that there are some, some guardrails in there, that are put together so that you don't end up manipulating stuff that you shouldn't be manipulating.

Scott Benner 25:43
Now, I agree, I think that if you if you could take a macro view of this, that the idea that this happened, and that there were this kind of small band of people who were so fervently, you know, developing the algorithm, and at the same time supporting people, and they even put up barriers for people to get to it. I mean, it's not easy to figure out how to do this. And so it's sort of that it sounds crazy. But I do the same thing with the podcast, like, I don't make it easy to be a guest on the podcast. And because of that, what if you're there, when I turn on the machine, when you say you're going to be there, I know, you really wanted to be on the podcast, and that, believe it or not, weeds out a lot of good next. So because there are people who flake and bail and, and you know, and I can't wait three months to be on or something like that. And I think the same thing about about loopy has to make it a little hard, you can't just hand it out like candy. because like you said, you could you could really not know what you're doing. But these people then help other people, they saw people brought them into the fold, explained it to him kind of created a little user base of it. And it expanded slowly. It's beautiful, really, like you'll look back on this in 20 years and think

Dr. Saleh Adi 26:58
Oh, absolutely, yeah, that's the revolution. You know, yeah, it really started start a revolution, the way we think about the whole field and about the approach of FDA approval in building software. And, and I think it also drove, you know, pushed the world of ABS into this interoperability concept even further. Because it's it's a product that stands on its own. It's just an algorithm data. Loop doesn't doesn't make a pump doesn't make a CGM. It's just a software. So you know, we don't have to build a pump. We don't have to build our own CGM. It's a software that should be able to be used by by anybody who uses either pump, or either CGM.

Scott Benner 27:46
Is tide pool involved in development, or are they? Are they quite simply just taking this specific algorithm and trying to move it through the process? Or do you think you guys will at some point, say, well, let's get some developers in here, and we'll get an auto Bolus, like version of this and things like that?

Dr. Saleh Adi 28:04
You know, I think absolutely right. It's, it's not just, let's take it, take what we have and get it approved, I think it's, you know, obviously, once it's approved, once that virgin one is approved, we're already working on version two. And it's going to have different features, and it's going to have, but we need to get the approval for the first one need to go out there and actually be used. But no title will eventually continue to be involved in the development and, and optimization of loop as a software.

Scott Benner 28:41
That's really I have to say, That's terrific to hear. Because as much as I enjoyed loop, it didn't really it didn't really live up to its promise for us until the auto Bolus branch came. And that that was a that was a step up. And and I'll tell you to, if for anybody listening, as much as I've learned about diabetes over the years and kind of put it into words that people can understand, I've learned a lot from the algorithm as well like seeing it. Take away basil or or up basil or to see like a bad site. Like you can see a bad site because Luke keeps bolusing you're stuck at 120. And Luke just keeps like the auto Bolus branch just keeps Bolus and Bolus and Bolus and I'm like, Oh, this thing doesn't think it's gonna break this. This this line right now like this 120 is sticking and then you learn to see bad sides because of that. You learn. You know how you could have attacked these things differently without the algorithm. I've learned more about using insulin from loop in the last two years, maybe than I have from using it.

Dr. Saleh Adi 29:50
And yeah, yeah, yeah. Yeah, because this is forcing you to think it's not just take an injection or take a Bolus and go away. There. Because there's not much else you can do, you have to wait for the effect of the insulin. I think because of the intelligence of the software, it's now doing all kinds of things. And if you're really into it, you can start looking at the data. You're looking at that CGM tracing and seeing like, where is it moving from here? Why is it not moving? How can it move too far it was this wasn't the intended action. And it makes you think, and the more you think about it, the more you understand it, and the more you understand it, the better operator you become,

Scott Benner 30:33
it almost becomes second nature. itself. Yes, it takes.

Dr. Saleh Adi 30:38
And it takes a while, it takes a while. And, and there are people who can learn something to themselves. And they can really make it work so well, if they're doing it themselves. But they can't teach it to somebody else. Just like, I don't know how I'm doing this. I just know how to do it. But there are also people who are really good about learning something and also teaching it to someone else. So I think that's where the role of the clinicians come. They have to really understand the algorithms, and figure out how to teach people at different levels of ability to understand these technicalities. And I'm not really good at that. I don't I still don't know how, you know, functions. 100% there's so many things that I don't know about. And I go back to my friends and colleagues and dipole. And I say, Can you tell me why did it do this? Why did it Why didn't do this. And then I learned one more thing about how it thinks and how it operates.

Scott Benner 31:46
I think that one of the biggest leap that we're all going to have to make is exactly what you just said, which is finding a way for clinicians to simply explain this to someone. I don't know that that's doable. Honestly, like, I think it almost is going to have to be one of those slow matriculation things. We're a generation of doctors lives with it like I did, and stares at it and sees it work, until you can just sort of talk about it in a colloquial way, without it seeming overwhelming.

Dr. Saleh Adi 32:18
Yeah, I think I agree with you, I don't think that it's possible for every clinician to be so immersed in the technology of diabetes, that they're going to understand every single device and every single algorithm, I think there are, you know, a handful of us who really, this is what they do for a living. And it's just best to look at data and look at numbers. And they just love that and they want to understand it. But not everyone's going to have that the ability and the luxury to spend that much time and do all of that. So I think the clinicians have have two different roles in this in this field. One is to know all of the algorithms and the hardware is and what they can and cannot do, and help the patient make the choice. And I stress the word help you cheat, the patient still has to make the choice on their own. Not as a challenge, but more like this, you know, what works for you and what doesn't work for you. But also, but the convention needs to be there for advice. And for sort of direction, I think this one might work better for you. I know you like you know, product B but I think product A might be better for you because of so and so based on experience based on just knowledge from the past and seeing other patients similar to you. So that's one and then the other is, is continuing the education started with simple and then come back, look at the data and say, Okay, how can we make this even better? I really think that closed loop systems should not be accepted to achieve time and range of 70 some percent on the I think they can do a lot more than 75 and 76%. If we if we learn how to operate them, right if we learn how to manipulate them, right. And if we obviously I'm talking like if you Bolus for everything you eat, of course, I mean that's like the essential thing. If you don't do that, then forget it. It's just not gonna achieve 80 90% in time and range. So besides doing that, I think that there's a lot to be done gradually for teaching patients and families and how to use the systems to make it work effectively more effectively. But I also go back to one thing you said earlier, which I think I totally agree with in believing, which is the settings the settings are absolutely key to making any system work effective. If you don't have your setting sites, I mean different systems work differently, obviously. And some will take whatever settings you have and manipulated and increase it and decrease it. And some will just ignore completely what your settings are and just think on their own. But I think for at least for the systems that are based on settings that we put into the pump, then I think that the settings need to be optimized as much as possible. If you don't have settings correct, then the system is just fighting too much, and not being super effective.

Scott Benner 35:35
So I think that leads us pretty well into into the next part of our conversation. I'm very pleased to bring this podcast to people because I think it does the thing. You know, part of what it does is it does the it does the job that manufacturers are not allowed to do because the FDA doesn't allow them to do it. And I say this here so that people understand that a pump company is not allowed to tell you how to Bolus for food. Like they're they're quite literally not allowed to, they can tell you that this is the pump. This is how the pump works. You know, functionally, this is what an extended Bolus is. But I can't tell you when to use an extended Bolus, besides, you know, beyond the example of if you have pizza, they're not allowed to talk about how to use insulin. And that's

Dr. Saleh Adi 36:24
not they're not clinicians, that's the clinicians job 100%. And

Scott Benner 36:27
so a lot of people get frustrated because they get on a pump and they think oh, the thing doesn't work, but they don't know how to use insulin. So at the basis of how I talk about insulin, whether you're using an algorithm or you're not in my mind in this order, it is get your basil correct. Learn how to Pre-Bolus understand the different impacts of different foods and then stay flexible. To me those are the four steps to stability and making decent boluses How do you think about that?

Just briefly before the ad start, let me let you know that that noise you were just hearing in the audio is a person down the street from where I record grinding up the trunk of a tree and that does not last for very long during the episode but I am sorry about it. It was far from here and sounded like it was happening right next to the microphone. Anyway, g vo Kibo pen has no visible needle. And it's the first pre mixed autoinjector of glucagon for very low blood sugar and adults and kids with diabetes ages two and above. Not only is chivo hypo pen simple to administer, but it's simple to learn more about. All you have to do is go to G Vogue glucagon.com forward slash juicebox. g Vogue shouldn't be used in patients with insulin, Noma or pheochromocytoma. Visit g Vogue glucagon.com slash risk. So far, there's been a lot of talk in this episode about algorithms, right an algorithm is a program that will live in the in the case of the Omnipod five, it'll live right in the circuit board of your pod. In the case of tide pool when it comes out. It'll live on your cell phone, if you're using a tandem pump. I think it lives right on the pump. I'm not 100% certain but it no matter which one of those you're using unless it's Medtronic. The one thing that all three of them are going to have in common is that they're getting their data so they can make those decisions that they're going to make from the Dexcom CGM. So maybe now is the perfect time for you to find out about the Dexcom g six continuous glucose monitor. Dexcom is a device that you wear, and it reports your blood sugar back to you in real time. Now for Dexcom users that could mean on the receiver that they'll give you or write back to your Android or iPhone, if that's what you want to do. Users of the Dexcom can have followers up to 10. Actually, people just like me or your mom or dad or brother or sister or school nurse people you trust, who can watch your blood sugar in real time on their phone if you like. or you don't have to share it with anybody. It's up to you. But the option is there. Now what is the Dexcom going to show you it's going to show you the speed and direction of your blood sugar. It's also going to show you what your blood sugar is. You're saying I'm saying the number, say your blood sugar's 124. This speed is it moving at all up or down. And if so how quickly two points per minute, three, four more. It'll tell you that too, with directional hours. So now the arrow is gonna point in the direction if your blood sugar's dropping, let's say and tell you how fast it's dropping so is my 124 dropping it four points per minute to one etc etc. This information is super valuable extremely extremely helpful, and at the core of not only how I make decisions about my daughter, but it's also the way that these algorithms are going to know what to do with your insulin. So just like seeing Arden's blood sugar tells me, I think we need a Temp Basal increase here, we should Bolus a little bit or maybe take away some insulin, whatever it tells us, whatever algorithm you choose, is going to also get that information. Please trust me, if you can afford this stuff, if you have insurance coverage, look into it. dexcom.com, forward slash juicebox, the future is here already. Go find links to the tchibo hypo pen Dexcom. And all the sponsors are available at Juicebox Podcast comm or they're right there in the show notes of your podcast player.

Dr. Saleh Adi 41:05
I love your elements, the four elements. And I think you're absolutely right. First, I would start with a Basal. You know, besides understanding how insulin works, and how long it takes for it to actually start working, and how long does it take to be to peak its action, and how long does it last before it finally gone and has no effect anymore. And different insulins have different dynamics. And understanding how food affects the blood sugar and how the dynamics of digestion and absorption different foods are slower and, and and faster than others. And and and they're different in each person. And they're different in the same person. If you eat something in the morning versus you eat it in the evening, the dynamics of absorption are completely different. So learning all of that all of those individual parameters about that particular patient, then we're we're talking about the algorithms and the software and the hardware, I think, you know, setting the basil correctly is number one, and then figuring out what the right ratios are the incident the current ratio, and the correction ratio, and the insulin duration timing, to factoring all of that into the thought process, not just the mechanics, but also the thought process. And that's really hard. You know, it's it's hard to ask everyone to do this every single time they eat something. So we have to simplify it in the beginning, and then get more sophisticated as time goes by. And it's like you said it's it, it then becomes second nature. It's hard to deal with in the beginning. So I think it's upon us actually the clinicians to make it simple to make it intuitive. And to start with smaller baby steps, and then keep going. And in order to do that, you can't just come to the clinic every three months, and do this lifetime of education about certain things, that the the interactions between the patients, the clinicians and the and the patients needs to be continuous all the time. You grab a teaching moment and you say, Okay, let's talk about this. Let's learn one thing today. And that cannot be again, like every three months, when you come to the clinic, there has to be a channel of communication that's open. And I think this is this is this was one thing that titebond really insisted on from the beginning, from the very early days is just like, we have to make the data visible in an intuitive and simple way, and an actionable way. So that we can collect the data. And we can visualize it very simply that everyone can understand it. Because it's key. You can't you can you can come up with all kinds of ideas and and interventions and trials and say, well, let's do this and see how it works. If you don't collect the CGM data and go back and look at it, you have no idea how your experiment worked or didn't work, or what worked and what didn't work.

Scott Benner 44:15
I've been considering for the future of the podcast. I have a friend of mine comes on the show sometimes Her name is Jenny. She's had Type One Diabetes for over 30 years. She works at integrated diabetes. So she is she spends her day talking people virtually through their blood sugar's and she's just really terrific. And one of my ideas for the future is to do a series for clinicians about how to talk to people about their stuff. And it's cool. Yeah, I think that one of the ideas I've had in the past that I don't know why hospitals don't do instead of seeing people 15 and 20 minutes at a time. What can't you do in a large group setting where you can put together a few hours. So you know, see, see 20 3040 people Time and give their give them a larger instruction, which will, by bringing them all together gives you more time to talk to them.

Dr. Saleh Adi 45:06
Like I think that it means certain things can be done in a group and certain things can only be done in one on one person. Sure. So I agree with you that we can be a lot more efficient if we, if we knew what to teach as a group, and, and the idea of doing classes. But now with the technology that everything can be done remotely via zoom and other platforms, then I think I think we need to take advantage of that. And we're not actually doing that very well. Would it?

Scott Benner 45:39
Would it surprise you to know that literally every day, I get between six and 15 messages from people who are experiencing stability, and a one sees in the fives or sixes who just previously three, four or five months earlier, we're on a roller coaster and had no idea what they're doing just from listening to a podcast?

Dr. Saleh Adi 46:03
Yes, that would that would surprise me. But pleasantly surprised to hear that that within a few months, you can actually get that kind of comfort and stability and feel good about it. It can be as you well know, I don't have to tell you this. But it can be extremely frustrating when you're trying to do something, and it just doesn't work. And I really think that, you know, for a lot of my my own personal experience that I have seen, a lot of people get really frustrated, simply because they've tried everything. And the reason that their experiments are not working is because their settings are not correct. And again, if you don't have your insulin to carb ratio, if you don't have your ISF, if you don't have your Basal rate settings correctly, you can go crazy doing all kinds of things. And this just doesn't make sense, right?

Scott Benner 46:58
You can work as hard as you want to dig a hole. But if you're using a screwdriver, it's not going to go well. And right this is this is what happens over and over. So how do you talk to people about the setting their Basal insulin, because the way I talk about it is so incredibly simplified that I wonder how you would talk about it.

Dr. Saleh Adi 47:19
Basal rate is one of my favorite topics to talk about. Because I believe that the base rate is the key to achieving good results. And it's the most important parameter to look at. Because if you don't get anything else, right, you can get the nighttime when there is no food and no activity, which is the which is the product of nothing else. But basically, there's nothing else going on at night. And if you can figure that out correctly, you get yourself eight to 10 hours of straight line of CGM that is going from left to right. And maybe just maybe changing a little bit or fluctuating, but it's still staying within the target range of 70 to 180, or even 70 to 140. So it's worth studying there. And if you get that right, if you get the base rate right at night, then I think it actually gets you in a very good spot during the day. You don't have to do basil testing during the day, you don't have to go for a whole day without carbs to figure out what your basil rate is. I truly believe that if you get the basil rate correct at night, it gives you a pretty darn good idea what the base rate should be during the day. That's number one. And number two is figuring out the basil rate pattern. There is a pattern of basil of basil insulin requirement throughout the day, but particularly at night. And that pattern is not just a flat one single base rate all night long. What the patient what that is the kids that I dealt with all my career is like when the child with Type One Diabetes requires, you know, point four units of insulin, it doesn't, it's not going to work if you do point four units of insulin the whole night. There's definitely a variability a tremendous variability. And it could be point four in one hour and can be point six or seven in one out and then come back two hours later, and it has dropped down to point two or point three units an hour. And knowing that pattern and following that pattern can really put you in a good spot. And then you can achieve a very good flatline of CGM during the night and it can be extremely satisfying. Not only that you had a very good night but also that when you get up in the morning, you're starting in a good spot to begin with. If you get up in the morning with a blood sugar of 300 it's really hard to get that that fixed For the for the rest of the day, if you start out with a blood sugar around 100, then I think it's going to be a much easier job to actually get it and stay in range for the rest of the day. So Basal rate is the key. Basal rate is the first thing I look at. and nighttime Basal rate is the is where we start. And once we get that, right, we know the basic rate for the day. And then we start working on the incident, the conversation and the eyes.

Scott Benner 50:26
So you have no way of knowing this because you don't listen to the podcast. But when other people listen to this, they're going to be able to feel me smiling while you were speaking. Because you would love this podcast. That's the first thing I can tell you. And you and I are like we are absolutely kindred spirits. You You really did just speak words that I have spoken almost in the exact same order. You used a couple of different ones. But you said exactly the same thing that I've been telling people for years. I'm so glad to know, I'm so thrilled you you said what you did? Because I agree. I mean, everything like I don't think you need to basil tests, like when I tell people when they ask like, Well, how do you figure out what your basil is? I tell them, I think of it as like an old stereo. I turn it up until my mom yells and then I turn it back down just a little bit. And that's good. And you you always do it overnight, right? Like because overnight, all the a lot of the impacts are gone. Unless they're children and they're growing, you know, but overnight, you get overnight, right? And then the daytime is going to be pretty close to the overnight. Some people need a little more overnight, a little less. But for the most part, if you can figure it out overnight, you can figure out during the day and then that just leads into the rest of it, then you can check on your meal insulin is my meal insulin right? Am I Pre-Bolus Singh enough in and then from there, it's just understanding the different impacts of foods and not getting caught up and saying, well, this is 10 carbs. And my ratio is one to 10. I don't know why this one not like what I tell people is I don't care why it goes up. If If meatloaf and green beans mashed potatoes, you know, comes down to 55 carbs, but you always end up correcting later with two more units. We'll then dammit move the two units into the bullet. Because Exactly. It's what that meal needs like just be done. Stop fighting.

Dr. Saleh Adi 52:18
Right, right. It's it's not it's not let's blame the manufacturer who printed the information incorrectly on the box and says if it says 18 grams, but clearly in your experience, it's 24 just counted as 24 next time doesn't matter what the box says. Yeah,

Scott Benner 52:34
no, this has been terrific because you just made me feel like a genius. I really am thrilled. Well, you are you are. No you didn't need to say that. But it just was so free. You know for your edification. Like, I've just been a stay at home dad for decades. My daughter was diagnosed when she was two. I was just like everybody else. I didn't know what I was doing. I didn't understand how the insulin worked. I felt like I was killing her constantly. And honestly, it was before CGM. I probably was. She had a she had had a couple of seizures from low blood sugars. And I just one day I was like, I gotta figure this out, or she's not going to be okay. And back then I had a blog, and I wrote on it a lot. And writing on the blog helped me figure out things. And then one day, I just said to my wife, I'm like, I have a system. I was like, there's a system here and it works. And I don't think it would just work for Arden. I think it would work for everybody. And I just realized that like one of the more damaging things that we say to people with diabetes is like, Oh, that's diabetes. You can't do anything about that. Yeah, yeah. Yeah. Or I'm brittle. You know, you're, you're brittle, because your settings are probably all wrong. Like Like, like, like your jump, I understand your blood sugar flies all over the place. But now I see people all the time. You know, when they come into the podcast, who look quote, unquote brittle from 20 years ago, but their Basal is just wrong, where they let me ask you this. How often do you find that people mistakenly treat Lowe's by taking away basil instead of increasing basil so that they can make better meal boluses does that Oh, it

Dr. Saleh Adi 54:16
it happens. It used to happen more often than it does now. And it all comes back to miss understanding the dynamics of insulin. Cutting off your basil is not going to treat your low, you're gonna be low for the next hour or so you need to do something else. You can prevent the low by cutting up basil, or by stopping the basil or together an hour before or an hour and a half before. But you can't treat a low by doing that.

Scott Benner 54:47
Yeah, let me let me dig deeper and tell you what I've seen from talking to people. So just let's be accepting of an idea that there's a person in front of you who needs a unit of insulin per hour as basil bye For some reason, they're using point seven. And then they end up having to make super aggressive boluses. At meals, they don't Pre-Bolus usually they fly up, then they crash down. And then they go back to their doctor and say, Look what's happening. And the doctor says, oh, you're having a lot of lows, we should take away your Basal insulin. Now they're point seven ends up point five. And all that does is make them be even more aggressive at meals next time creating more lows. Do you see that? Have you ever seen that?

Dr. Saleh Adi 55:28
Oh, more often than I would like to. And I think that even a lot of people also on their own start adjusting their basil incorrectly. I, I encourage people to look at their data and make small changes. But the first thing that they always think about is it's the base rate that needs to be changed. And sometimes it's it because I think it's really hard to figure out whether the insulin to carb ratio is working or not working. I think it's harder to look at it, I don't think it's really hard. I think it's just harder to assess it. Versus it's the Basal that's too much, or it's the Basal is too little this increase that and all of a sudden there's this imbalance between the basil and the Bolus is. And I think that's also an important thing is to understand for each age group, what should the basil present be compared to the total daily dose of insulin? And that can be an extremely helpful guidance towards where should I be looking? First, there's a big discrepancy. I know that, for example, a 14 year old with Type One Diabetes should have about 40 to 45% base rate. And all of a sudden, I see someone who is 14 year old and only getting getting like 65%, in Basal were clear and 35% in bonuses. And the carb ratio is only, you know, one year for 20 grams, then clearly, there's an imbalance there and I can direct I can straight go to that Basal retinas sake, that's too high, 65% Basal for a 14 year old or for anyone age, that's just too much. I think we need to cut back your Basal. And let's either wait and see what happens to your blood sugars, or we can blindly increase your insulin to carb ratio, because it clearly too low and adequate need to read. We rebalance things a little bit. So it's a very helpful first look to say, where are we in the ballpark of Basal rate? Is it the right percent? Is this something that we need to just generally increase or decrease? Or is it more like it's in the right ballpark? I just need to fine tune it a little.

Scott Benner 57:47
I sometimes believe that that's a holdover from old MDI, clinicians who just pushed up basil to Yes, yes. To ask other problems. Yes, yes. Oh, what was I just gonna say do basil. Oh, I, I have this theory. If this is anecdotal, completely, but I do end up talking to a lot of people, I think a good place to start with children who are pre pubescent, like, you know, no, but nobody's into, you know, any other. Any other real growth yet? point one per hour per 10 pounds. That's where I start in my head. It's not all of it for basil, basil. So if you're 50 pounds, you're around point five. If you're 40 pounds, you're around point four. It's a starting point. It's not always 100%. Correct. But yeah, but when you're, but I find myself frequently put in a position where I'm talking to a person privately, who I don't really know. And I don't know how to like, I mean, they want to they're, they're lost. They're, I mean, try to imagine so that you've, you're, you're a parent of a child, or you're a grown up with diabetes, and you're reaching out to a person on the internet for help, like, imagine how lost you are in that moment, because that's not a good idea. And so then I get a message from somebody. And I say, Well, look, let's just get your basil straight first, then I think everything else will start making sense. Well, where do I start? And then you look, and they have 7000 basil rates, all because they've been chasing ghosts for weeks, you know, trying to, you know, things around. And I'm like, like, let's just start here. And I usually say, if it's a 50 pound kid, and I see for instance, they're at point two, five, they're at point three, five, but they're always in 200. So I'm always like, well, I would maybe move that 2.4, let it sit for a number of hours, see what happens. And then we can move it from there. That's just a jumping in point for me. But

Dr. Saleh Adi 59:39
I never thought of it that way. But it, it may be perfectly reasonable to then I will have to do the math. And if I were to approach it from the way I think about it, I would say you know, a pre pubescent child, let's say an eight year old For example, or a seven year old, would require a total daily insulin of somewhere around point five units per hour. For everything total daily, so a seven year old, let's say if it's a I'm sorry, what did they say? point point five unit per kilo per day? Sorry. I misspoke. point five units per kilo per day. So how many kilogram is that child, let's just say if it's a 20 kilos, that means the total daily insulin should be about 10 units, 10 units for that child who was a seven or eight year old, about 40% of that, or less 35 to 40% of their GDP base rate. So that's about three and a half to four units a day of base rate. Does this jive with your calculation? You don't have to do the math? No, no,

Scott Benner 1:00:55
it's pretty close. It's and like I said, it's not a perfect thing. It's not like you just say to somebody, what's your way? This is it? It's a starting point. It's an exactly, you know, exactly. And that's what they lack. That's what I've learned when you're speaking to people's what they lack is, they're like, I don't know, up, down left, right. I've got seven basil programs. My doctor keeps you know, every time I say, Look, he's, you know, no one says my kid's blood sugar's high at 11 o'clock every night. No doctor says, Do you eat a high fat meal in evenings? Like no one ever says that? They say, oh, we'll turn your basil up an hour before it goes up usually.

Dr. Saleh Adi 1:01:29
Right. Right, right. And the other thing I see a lot is, you know, it's in, you know, if you're, you get up in the morning, your blood sugar is 200. And then immediately jumped was like, well, your base rate is not enough. We need to increase your Basal at night. And I think that that happens a lot. And sometimes it's correct. But oftentimes, it's not. Because what was your blood sugar at bedtime? And what was it at two in the morning, if you went to bed at 202, in the morning, it was 200. When you woke up in the morning at 200. That means your Basal rate is actually pretty darn good. It kept your blood sugar exactly where it was the beginning. And for the whole night, you're a 200, ss flatline. 200 that means your base rate is perfect. You don't need to increase your base out what you need to do is to increase your insulin to carb ratio for dinner, or increase your base or before midnight. So that way, you actually hit the night, hit the bed and hit the night with a good blood sugar and it stays that way. And you wake up.

Scott Benner 1:02:29
Yes, yes, yes. That's the way I think about insulin gwit. When I tell people, I say look, insulin you use now is for later. But more importantly, more importantly, the way to think of it. If you're if you're in the middle of managing in the moment, you have to think of it this way. Insulin from before, is for now. That's it right? Right. Right, right. Same thing, but it's a different way of considering what's happening to me now is from before, like that, that helps you in the moment make a decision. Not you know, if you say well, what I'm doing now is for later, people chase they just keep chasing the insulin. It's it's just it's like a time travel movie. And they're in the wrong timeline. You know, II mean, like they're fighting the dragon, the dragon. The dragon was here three hours ago. You don't find it now, you know, get and I always tell people get low, get steady start over. Like don't because they'll chase for days and weeks. And in it. Yeah. And that's the thing that gets. I think that's where the psychological impact comes in that feeling of I'm working so hard and nothing's going right like and and I want to trace back to something you said earlier, I do completely understand that when people are newly diagnosed, that you want to spoon feed them a little bit and bring them along slowly. But I think the one sentence that never gets spoken to people that they need is this is what we're doing now. But this is going to keep changing. Because exactly they get stuck, especially when a honeymoon ends. I don't understand. I don't understand what's happening. Well, there's not enough insulin here has to be this has always worked hasn't and then I think has no one told you that this was going to increase or how is it he didn't think that you gained 10 pounds. And now you need more insulin, or you know, like little things that just you get you get so you get so micro and you're so close to it. You just kind of can't see the forest for the trees after a while. And if someone doesn't tell you that you have to step back every once in a while. You'll never think to do it.

Dr. Saleh Adi 1:04:29
It's Yeah, no, I agree. Scott, I think this is you know, in pediatrics training, this is drilled in our head, which is the anticipatory guidance, which is to tell the parents what to expect next year, what to expect six months from now, so that they're not all of a sudden, oh my god, what's happening to my child. So it's that anticipatory guidance and then telling them what's going to happen from now. And don't be surprised, and I've always taught people and I can't believe that I get the same response every time just like when they hit puberty, they're going to be on 1.2 units an hour, they're going to be on a current ratio of one to five grams of carbohydrates. Don't be surprised when that happens. And all of a sudden, they just their eyes wide open, just like what they're going to require that much insulin, it's gonna come in just like, no, that's what they need. And we just have to keep increasing it with time. And then the other thing is, no matter what we do, we get the settings right, we get we work really hard at that base rate to get to be just perfect for the whole night. And guess what? It works great for about two weeks, and then two weeks later, just have to start over again.

Scott Benner 1:05:41
Well, I think something you just said really, really sticks with me because I have a number of episodes on how much is enough. And I preach to people that the amount of insulin you need is the right amount of insulin. Not because they ascribe a number to it, or a percentage jump freaks them out. That's another thing that happens to people I get dumped. They love to say it double That can't be right. Well, it appears to be right. And but people get stuck. And when that drags into adulthood. Suddenly, I've interviewed a lot of adults with type one diabetes, they start getting psychological impairments that are difficult to shake. And one of them one of them is a shame about how much insulin they use. Yeah, that's fascinating, isn't it? Yeah, no. So I I've done my best to, to make sure people understand you know, that you just need what you need. Oh, so my daughter 17. She weighs maybe 130 pounds. She is as fit and healthy as you know, a person could be and her her ratios. Her her carb ratio is like one to four and a half. Wow. And that's just how we have our that's what works for her. Now Could I dump a bunch of basil on her and just make sure she eats you know, three times a day and has a snack before she goes to bed? I could. But my daughter also got up this morning. went to high school has not eaten yet. It's 130. Here. I just got a text from her. When are you done? I want to have lunch. Okay, so that okay, and I'm going back on her CGM. I'm going to go back 12 hours, turn my phone landscape and tell you that at 145 in the morning, she was 118 down to 109. I'm now at three o'clock. She's 90 480-893-8591. It's six o'clock. She said school. She's 92. That's it. She's been between 90 and 85. For the last 12 hours. She has not eaten a morsel in that time. Yeah, and that's good. Basil. Right.

Dr. Saleh Adi 1:07:51
That's what but that's that's both the basil way as well as loop and the algorithm. Right. So so but I think it's, I think you also described something which is very key, it's not looking at what her blood sugar is right now is also what it had been over the last hour or two. Because it's a different it. It's when I tell people is with CGM. It's not a blood sugar of 92 anymore. There are five different 90 two's, there's 92 and two arrows up, there's 92 and one arrow up, there's 92 and straight to the right, and two down. So there are five different 90 twos. And each one of them you think about it very differently. And your decision making is going to be different if you have a 92 up versus down.

Scott Benner 1:08:40
Yeah, no, it's just great. Listen, you're allowed to come back on the podcast whenever you Thank you. It every February if you ever like find yourself sitting around the house, you haven't worked in a while and you're like, people need to know about this, you send me an email, get your right on here. Because right, because I really, I can't tell you how much I appreciate your input and your knowledge, especially over all this time. And and for the people listening to I have to imagine it brings them some sort of solace to have you come on with you know, you got quite a quite a long list of bone a few days in front of you. And you really did just say what I say on this podcast for a while and I hope that helps people feel comfortable because I think that you have to dispense with your fear of insulin first. You know, and there are about 1000 other things to understand. And to your point, you can't get them in a doctor's visit. You know you can't bring people together. I think this delivery system for information is great for people because it's at their pace and on their time. And I honestly think if you if you were diagnosed today, and I've seen it a million times already, and you just listened to this podcast. I think you have an A one C in the sixes ease And I, I swear I don't want to do it on here because it'll seem self serving. But I could show you just endless, endless messages about the same thing, people who are diagnosed and find the podcast in the hospital on day one, and will report to me six months later that they don't even understand what. Like when they hear people having all this trouble. They're like, I don't I don't even understand how they could have this trouble. And I was like, Well, yeah, but you you started listening on day one.

Dr. Saleh Adi 1:10:29
Yeah, it's not easy. It takes it takes knowledge, managing type one diabetes, it takes a lot of knowledge. And, and it's acquired the gradually and slowly over time, because it's biochemistry, its biology, its physiology, its food, science, its activity and exercise, physiology and all of those things. And then and then pharmacology when it comes to insulin. And then now we're throwing, you know, software, stuff over, you know, on top of things. So it takes a lot. And it can be overwhelming if you think of it that way. But just take it one step at a time. And look at the data. You have the data, you have tons of data, everyone has CGM data, everyone has pumped you and Bolus isn't insulin, just download those devices take half an hour to just take a look at it and see what makes sense. And if something makes sense. And if it's something doesn't make sense, ask your child, they actually didn't have significant input and insights into it as well.

Scott Benner 1:11:33
I just realized just looking at my at my daughter's data and talking to you. I saw by what the algorithm was doing that her basil could have been a little stronger today because it was taking it away and then Bolus thing and taking it away and Bolus thing for those 12 hours. So if the basil was maybe a tiny bit higher, it might have been able to get away with takeaway and not Bolus, but in the end, it's working exactly the way I want it to. So Right, right. I can't thank you enough. I I invite you if you're interested. Beyond the hundreds of conversations that are in here with people with type one diabetes of all ages, I have a series called defining diabetes that goes through all the tools and in a short way explains what they are. There's a pro tip series that walks you through how to manage yourself. We just launched a variable series. You know, I think the last episode of the variable series was video games. Because, you know, the adrenaline from playing video games for some kids makes your blood sugar go up. I have a great afterdark series with people who have all different kinds of like real world life problems that people who are bipolar, you know, have serious complications there. You know, all this stuff, people that type one talk about it, I swear to you, you listen to this podcast, you're gonna think I ripped you off. So I can't thank you enough for doing this. I mean, this is really wonderful of you to

Dr. Saleh Adi 1:12:58
know I very much enjoyed and Scott, thank you for having me.

Scott Benner 1:13:01
Yeah, and I'm gonna thank the person who sent me your name, even though I don't remember who that was. So if you're listening, you did this. And thank you very much.

A huge thank you to one of today's sponsors, je Vogue glucagon, find out more about chivo hypo pen at G Vogue glucagon.com Ford slash juicebox. you spell that GVOKEGL Uc ag o n.com. forward slash juicebox. I'd also like to thank Dr. Adi for coming on the show. And I mean it sir. If you're listening, come back whenever you like this is fantastic. Lastly, thank you Dexcom for being a generous sponsor of the Juicebox Podcast if you want to learn more about the Dexcom g six continuous glucose monitor. That's at Dexcom comm forward slash juice box. If you enjoy the Juicebox Podcast, please share it by telling a friend that really is the best way to help the show to grow, sustain. And to continue on. Just tell someone, listen to the Juicebox Podcast, show him how to open up a podcast app if you have to show him where the subscribe button is. That kind of stuff is a huge help. Hey, and if you like the show, you might really love the Juicebox Podcast Facebook page. It's a private group with almost 15,000 people in it now, all talking about stuff like we talked about today. Juicebox Podcast Type One Diabetes on Facebook is the least Facebook place on Facebook. I think you know what I mean by that. And if you're still listening, I'm going to assume you're a real big fan of the show and ask you have you gone to T one d exchange.org forward slash juice box yet and filled out the survey. If you haven't, and you're a US resident who lives with type one or a US resident who is the caregiver of someone with type one. Please do that right now. It'll literally take you less than 10 minutes. There'll be a huge help for people living with Type One Diabetes and you'll be supporting the podcast at the same time. T one d exchange.org. forward slash juicebox. That's it for me. Thanks so much for listening. I'll be back very soon with another episode of the Juicebox Podcast.

#540 Diabetes Variables: Stress

Diabetes Variables: Stress

Scott and Jenny Smith, CDE share insights on type 1 diabetes care

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to Episode 540 of the Juicebox Podcast.

Jenny's here today to do another diabetes variable with me. And today's topic is stress. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan for becoming bold with insulin, know this as well. Jenny does this for a living. If you want to check her out. Go to integrated diabetes comm you can hire her. Hey guys, please don't forget to go to T one d exchange.org. forward slash juice box and fill out the survey you'll be helping people with type one diabetes and supporting the show. If you do that, it really does just take a few minutes. It's HIPAA compliant. Absolutely anonymous, you do need to be a US resident who has type one, or is the caregiver of someone with type one. But otherwise, if you haven't done it already, please go fill out the survey just takes a few moments.

This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter. Head over to Contour Next one.com Ford slash juicebox. To find out more links to Contour Next One comm forward slash juicebox as well as all the sponsors are right there in the show notes of your podcast player. We're at Juicebox podcast.com. When you support the sponsors, you're supporting the show, so allow me to thank you right now if you've used any of those links, or if you're considering using any of them. Alright, let's get to Jenni. How does stress impact blood sugar's?

Jennifer Smith, CDE 2:12
Do you want to talk or should I?

Scott Benner 2:14
Well, I mean, it seems it seems obvious, but it's not because I've spoken to people who get stressed out and their blood sugar's go down. So I'm wondering what you've seen from people on both sides of this.

Jennifer Smith, CDE 2:30
I've seen more people who have an impact of stress with a rise in blood sugar or an increase in their insulin need. It isn't to say though, and a good friend of mine, her level of stress, just like her level of like adrenaline rush causes her to need less insulin. Okay, like race morning, she is cutting her insulin down while the rest of us are like rage bolusing

Unknown Speaker 3:02
blood sugar.

Jennifer Smith, CDE 3:03
She's like, what do you guys all doing? Like you're sitting at like 82 like going down? down this high. Right? But yeah, I mean stress the same thing. For the most part stress will cause a rise in blood sugar relative to that like mental strain. It's kind of putting I mean, and then you have to determine the type of stress right? Is it a mental stress? Is it something that you're really working through? Is it a lengthy stress like several days worth of something happening? I mean, one stress I can say personally really increased my insulin needs was when my dad passed away, okay. I mean that week with going to family helping my mom out with a week and a funeral and everything in the process. I was using like a 75% temporary increase in my basil. Okay,

Scott Benner 4:00
well, it was a lot I'm looking here and long term stress can increase depression caused headaches heartburn, insomnia, weakened your immune system. Make your breathing rapid puts you at a risk for a heart attack. It can bring up your blood sugar, your blood pressure, pounding heart fertility problems, stomach aches, low sex drive, erectile dysfunction, miss your periods, tense muscles and high blood sugar. Yes. So when you're under stress, it is not healthy for you know, that's obvious, but it actually can impact your blood sugar. And I don't know if people would consider that or not.

Jennifer Smith, CDE 4:37
Yeah, and you know, in terms of that effect, you also then have to look at the length of time that the stress is going to happen for and if it's already impacted these other health pieces. If you've ever been under significant like work related stress in the past year, then you may have caused injury really too many other pieces. Have your body which until they get healed is likely causing inflammation and inflammation in and of itself also increases blood sugar increases your insulin D input increases resistance to insulin. So stress is bad.

Scott Benner 5:18
And well, I guess what I'm thinking is, like we talked in other variable episodes about, like, you know, I said, My daughter gets into the shower and her blood sugar goes down where a lot of people, you know, would say that might be heat, I kind of think that she's relaxing. Sometimes I think of it that way, like, and can you just chill out? And is that possible in our society, the way the way our days are set up, right? Like this is way more about, you know, your general health than it is about maybe blood sugar health, like sure. stressful moments can make your blood sugar rise, you should be aware of that. I've seen notes from people who have car accidents fender benders, right? And boom, you know, their blood sugar goes up, you think, well, that might be adrenaline, but then it stays like that for hours and hours. And if that's

Jennifer Smith, CDE 6:03
more that fight or flight, that's, that's

Scott Benner 6:05
okay. But yeah, I mean, I realized that this is somebody telling you be generally healthier, and you'll be generally healthier, which is obvious. But it's, um, stress can cause your liver to release extra sugar into your bloodstream, which over time puts you at risk for type two by diabetes. This is telling me here, meaning that if you're a long term stress, you're hurting yourself long term. Right? Wow. So is I have to say I use a breathing app on my phone. It's really helpful. I mean, just got one on my watch. Yeah, yeah, a couple times a day, it, it pings me, and I spend 60 or 90 seconds doing some sort of in and out breathing. It's kind of nice. I mean, I'm sure it would be better if I moved to Wyoming and lived on a hill and a cabin, I'm sure I'd be less stressed. Although I gotta be honest with you. I'd the entire time I'd be like a bear is about to kill me. I'd be incredibly stressed out by that. But you have to find a way to overall lower your stress. But in the moment, so in the moment when it happens. Do we Bolus weren't

Jennifer Smith, CDE 7:13
in the moment for stress is kind of like the adrenaline Bolus consideration, right? Do I Bolus for the stress in terms of like the car accident example. And my blood sugar's now shooting through the moon, you could Bolus at least minor amount. Because obviously, the incident as well as the skyrocketing blood sugar is not going to create anything that's more even flow. It's just gonna keep increasing your anxiety.

Scott Benner 7:45
Let me ask you a question. A personal question before we wrap this one up?

Jennifer Smith, CDE 7:49
Yeah. Do you?

Scott Benner 7:51
Are you so in tuned with yourself? That you always know because it's unfair, like you're here, like this front facing image of you is Jenny, who knows about diabetes, but you're a person to like I actually want to do and I want to interview completely about burnout just one day, like, like, away from all this, like the baby stuff. And but if you're stressed out, if your kids are struggling with something, and your husband's being a jerk, and somebody else is doing a thing, like Do you notice that? And how quickly Are you able to say to yourself, my life is more stressful right? Now I need more basil? Like does that in a real world situation? Does it work?

Jennifer Smith, CDE 8:34
in a real world situation, if you have enough awareness of everything that's happening, it can work to use a temporary increase to basil. I mean, many people I know who are using a pump, you know of whatever kind of pump you're using, have either a basil profile that may be termed stress, or they have a temporary basil kind of setting that's specific to stress increased need. I've got an override that's already programmed for stress. Thankfully, I don't use it very often right now. It has happened. I mean, in terms of like life, things happen, you know, somebody might need some additional help in the family. And beyond that you don't have time to take off of work. So now you're juggling and juggling and sleep, you might get three hours a night instead of your eight hours a night and that can definitely increase you know, but personally, yes, I've, I feel like at this point, I know myself well enough to be able to say my kids spilled the milk all over the table. That's not going to cause my blood sugar to go to 250 I'm just gonna tell him to get a cloth and clean it.

Scott Benner 9:49
I asked because I've become much more in tune with the idea that people have anxiety since I've been doing the podcast because I am a person I get up in the morning. You know what I'm thinking about nothing. I go do the thing I'm supposed to do, I do it as well as I can, if it works out great. If it doesn't, whatever, you know, and I move on, right? But I see my wife get out of bed. And she, you can like, look her in the face. And she's going through a checklist already. She knows what's happening today. And if what's happening today is something she feels like she can't keep up with. It stresses her out. And I've just talked to too many people at this point, who live in that reality. And I just wonder. I mean, it's, it's too simplifying to say to them lower your stress, because they're like, yeah, da, thanks. I can't, you know, so. I don't know. Just

Jennifer Smith, CDE 10:41
I know myself, you know, in terms of like, as you asked me, personally, I know myself enough to also say that I'm kind of like your wife in terms of like the morning time. I'm German. I'm a little bit like, like strategy, figure it out, apply it kind of you know, so in the morning, especially on the weekdays, I know my checklist of things, I have to do this, I've got this many people to talk to, I've got to attack emails, I've got a project, I've got a podcast with you. I've got, I've got this checklist of things. And I keep moving through it through the course of the day. But a stress to me, that would increase like my need for insulin overall would be something major happened to like a family member, and it's blowing all those things on my checklist, like they're now off the list. And like this is an immediate and I'm like, okay, must assess and redo and plan differently. And I

Scott Benner 11:43
only worry about my kids and my wife like that. I don't worry about anybody else. Like when I get in bed at night, I can see Kelly going through that like wind down thing she does. Like I feel terrible. Because all I'm really concerned about what is like are the blankets where I wanted to be and do I have my pillow flip the right way and is my phone on its charger. And once it is on like goodbye. And then I'm just asleep. where she's, you know, trying to decompress and trying not to think about tomorrow. And I feel terrible for anyone who's caught in that because it really is, it really seems like a place he can't get out of

Jennifer Smith, CDE 12:20
you. In terms of like overall stress that's I use that that breathing app like you talked about, I use that because especially in the evening time I really tried to stay away from like, technology itself, right within about 30 minutes of actually like getting in bed and trying to like fall asleep. Because that I found is a big impact for me. I have like one of those mindful adult coloring books.

Unknown Speaker 12:50
adult coloring book, it's just kids,

Scott Benner 12:56
let me clarify for Jenny. They're there. Because my wife actually has these two. They're very intricate, pretty pictures, not naked people having sex. I got your

Jennifer Smith, CDE 13:05
intricate pretty flowers and deer and fish. And yes, there was funny to watch you catch yourself. Anyway, but things like that to kind of do that decompress. And while my brain has an idea of what's coming in the next day, I'm really not too like focused on it until the next day, because I've found that I don't sleep.

Scott Benner 13:27
Here's an interesting question. And I will let this go after that. But say I'm pre diabetic, right? I'm like, type two diabetes is coming for me. And I'm also an incredibly anxious, stressful person. Is there a world where and I'm not pushing medication. But if a doctor prescribed like, like an SSRI or something like that, to take care of the anxiety that as the anxiety went away, and the stress went away, the blood sugar impact would go away as well, to some degree, I mean, could you get some win out of that?

Jennifer Smith, CDE 13:58
You could get some win out of that. I mean, we always try to encourage people in terms of like lifestyle change to actually make a lifestyle change rather than a medication addition. But yes, in all, whatever type of stress reduction you put into play, could have enough impact that that person on the path that they're on whatever stress management strategy they're putting into place could make them turn the road down the path that's going to prevent that now they're going to have to continue whether it's now I start taking a mile walk every morning, because it decompresses me, I think through what's coming for the day, and I'm ready, maybe they choose to start eating broccoli now rather than a handful of potato chips at lunchtime. So there might be other little things that they could do along the way that impact the stress that's on their body helps them to feel better or decreases the chance of type two or any other health condition itself, which in and of itself is a decrease for anxiety as well. Right? If you know you're doing something good to prevent something,

Scott Benner 15:05
even if it bolsters you, I have to say it would be criminal Not to mention in a even in a short conversation about stress, that activity, you know, of any kind is, is really good for your mental health, it just really is. So, okay, well, thank you very much. Friends, if you're enjoying the variable series, I'm going to list all of the available variable episodes in just a moment. But first, I need to tell you actually, I want to tell you about the Contour Next One, blood glucose meter, you know, bare bones, simple cell, it's really, really accurate. And that's incredibly important, especially in a world where sometimes we just get the meter that someone gives us, you can actually make a choice, you can choose an accurate, reliable meter. And the Contour Next One, in my opinion is exactly that. Not only is it easy to carry, easy to read, easy to see at night, but it has Second Chance test strips. So you can go in for some blood, get some but not enough and head back for the rest without impacting the accuracy. We're ruining the test trip. I don't know what else you want in a blood glucose meter. I mean, if you want it to be Bluetooth enabled so that you can launch an app on your phone and see your records. It does that. And it works fine if you don't want to use the app. So there's a lot of flexibility in there for you lets you choose. I mean, really, it's just a great meter. So why don't you check it out, it's super simple to look into Contour Next one.com, forward slash juicebox. He may be eligible for a free meter, there's a test trip savings program that you might find eligibility in. And it's possible that all of this could cost you less in cash than you're paying right now for your current meter through your insurance, I think I'm not sure. But it could work out that way. And if not let your insurance pay for Contour Next one.com forward slash juicebox. If you have to have a blood glucose meter, you might as well get a good one.

First, I want to thank Jenny for lending her expertise to the shell. Don't forget, you can find her an integrated diabetes calm. I want to thank you for listening. And I'd like to remind you that there are others in this variable series. trampolines, temperature travel, exercise, hydration, food quality, leaky sites, or tunneling video games and today's stress. There's one coming every week, this variables list is compiled by listeners just like you, we did it over on the Juicebox Podcast Type One Diabetes private Facebook page, if you're not a member, you should go check it out. We do stuff like this all the time over there. Listeners just like you made a list that is so long that there'll be variables episodes coming for ever I feel like but for now, just once a week, I'm gonna let you go in just a second. But if you're not part of that Facebook group, I wish you are. It's private. And it's full of people just like you. It's a matter of fact, I think this month, September 2021, I'll be celebrating 4 million downloads of the Juicebox Podcast. And I think I'm gonna do it with a like a q&a, I'll probably just jump on Facebook Live, or do it through zoom or something like that. And if you want to know about that, I'll be announcing it there. So I hope you'll become a member. There's you know, it's absolutely free, obviously. I mean, I hope that's obvious Juicebox Podcast, Type One Diabetes to private group, you'll have to answer a couple of questions to prove to the algorithm that you're a human being. And then after that you'll be in and talking to other listeners, just like you. Hey, thanks so much for listening, and for supporting the show. I really appreciate it. I'll be back soon with another episode of the Juicebox Podcast. Please continue to share. Subscribe in a podcast app, tell a friend. Leave great reviews wherever you listen, that kind of stuff is all very supportive and super, I mean helped it. Take the T one D exchange survey. Support the sponsors. All right, that was choppy at the end, but you get the point. I appreciate you. Thank you so much for supporting the show. I'll be back soon.

#539 Diagnosed in Iran

Shaya is the mother of a young child living with type 1 diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, welcome to Episode 539 of the Juicebox Podcast.

On today's show, we're going to be speaking with Chaya. She is the mother of a child with Type One Diabetes. Who was diagnosed while they were on a family trip to Iran. It's a really interesting story that I think you're going to enjoy. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Please always consult a physician before making any changes to your health care plan, or becoming bold with insulin. Have you been looking for a place to talk about diabetes online? Look no farther than the Juicebox Podcast private Facebook page. The page now boasts over 14,000 members 10,000 plus active every day, conversations about all kinds of topics, you're bound to find the one that you're looking for. And if you don't, it's cool. Just start your own conversation. There are plenty of people there just like you. We're excited to chat and see if they can help. It's called Juicebox Podcast type one diabetes, it's on Facebook. It's completely free and private. Check it out.

This show is sponsored today by the glucagon that my daughter carries. g vo hypo Penn Find out more at G Vogue glucagon.com forward slash juicebox. The T one D exchange is looking for type one adults and type one caregivers who are us residents to participate in a quick survey that can be completed in just a few minutes from your phone or your computer. This survey is 100% anonymous, completely HIPAA compliant, and does not require you to ever see a doctor or go to a remote site. Every time someone completes the process using my link, the podcast benefits. So if you've been looking for a way to help Type One Diabetes Research, the podcast are both nothing could be simpler, easier or more beneficial. Just go to T one d exchange.org. forward slash juicebox. When you get there, click on join our registry now. After that, just simply complete the survey and you'll have helped people living with Type One Diabetes.

Shaya 2:31
So my name is Shaya. And my son His name is Suren. He was diagnosed last November, November 2019. And he is five turning six in April. Almost six.

Scott Benner 2:45
How do I pronounce his name? Sudan. Saran? Yeah. All right. I want to make sure I get it right. Alright, shy? Okay. So oldest child only child.

Shaya 2:58
And I have another daughter. She is turning three in March. Okay.

Scott Benner 3:03
So your your first? How about? How about type one diabetes or other endocrine autoimmune issues and your family? Are there any?

Shaya 3:13
Nothing? No. None. He was the first ever and shock was big because we even haven't heard about it at all before.

Scott Benner 3:23
Okay, where do you live right now?

Shaya 3:26
So I live in Canada in Vancouver. But when he was diagnosed, we used to live in Edmonton in Edmonton. So last year, yeah, Albert.

Scott Benner 3:36
Alright, so Canada, gender diagnose, what was the diagnosis? Like how did it arrive?

Shaya 3:44
Yes. Um, so last year, it was in November of last year, not 2019. We had my cousin's wedding in Iran. And we booked the trip a few months before and we wanted to go to the wedding. So what happened? When we were planning the trip, we decided to stay two extra days in Frankfurt, Germany on our way, because that's where my husband grew up. And he always wanted to go back and check the ad where he grew up, right. So we booked this trip. And then about a month before the trip Saran got very sick like sick as he has ever been before after has this rash, fever, a strep throat. He was on antibiotics and everything. And that's when he started. Like being super thirsty, peeing a lot and drinking all the time. And at first we thought about it was the fever and he's thirsty. So he drinks and then he wants to pee, of course. And he got better, but it continued and then the thing was, it was on and off. So he would be peeing a lot one day and one day he was as normal, so we didn't think any of it like anything about it at first. And then I did at Google it like, a week before we went to Iran. And it came like it went to a page that was explaining type one diabetes. I was like, Well, of course, it's not this. So Never mind. And then I went out. And so it just continued to kept getting worse. He was like, his behavior was like, awful. He came back from daycare every day in such a bad mood, he would cry, and like he would scream at her. So he wasn't himself, I thought. And I just thought, well, it's something in daycare, something's happening at the daycare. And he was like, yeah, we're going to Iran, we'll figure it out after so then the day we were going like in the airplane, just imagine we are in the, in an in a flight for 11 hours, the flight to Frankfurt was 11 hours. And he was going to the bathroom every 10 minutes. And I'm like, kid, stop drinking, just don't drink so much water and he was crying, I'm thirsty is good. We were water. And it was like, I don't want to give you more was to stop drinking. It was crazy. It's like taking a kid to the bathroom in in airplanes, hardware itself. Just take him 10 every 10 minutes,

Scott Benner 6:27
six times an hour for 11 hours.

Shaya 6:33
So maybe it was sleep. And then he slept for a few hours in between that was good. And then he woke up crying, and I'm thirsty. I need to go and all that. But anyway, so we got to find four. And he's he was so bad. Like he was crying all the luggage was the worst trip of our life that two days in Frankfurt. And then I started like, I called my aunt there. And my aunt is a doctor in Iran. And she was like, maybe she just us just anxious because of the trees. It can be anxiety causing it. Of course, it can be type one diabetes, but like it can also be anxiety. So don't worry about it. Come here, we'll figure it out. And then I was like, okay, so it might be type one. And then we started worrying. And then we were really worried. So googling and we saw that oh my god, he can go to decay. And we are in Frankfort. We have no access to anything, don't know what to do. And it just like it was bad. So then next day, we went to Iran. And he like the wedding was two days after that. So the night the day before the wedding. He got tested, and his blood sugar was 290. I think it wasn't that high. And he's a one to one. It was 9.8. Wow.

Scott Benner 7:51
So to go back to the beginning, he gets sick. Did they ever diagnose the illness? Or did they just give him an antibiotic all the way back at the beginning.

Shaya 8:01
They didn't diagnose it, but based on his symptoms, I thought it was a scarlet fever. It was very similar, like his tongue and rash and everything. But when I mentioned it to the doctor, he just said, Well, maybe we can never be sure if it's a scarlet fever. But well, he has a structured so they get on to I say,

Scott Benner 8:22
Okay, so the diabetes symptoms and the at least the strep throat that you know about pretty much start hand in hand. Yes, yeah. Okay. And even though you saw the information about type one early on, that probably just seemed ridiculous. Yeah, yeah. Right. Like it can't be this. When you are in Frankfort, and you're now looking again, and you're pretty sure this is diabetes. Do you remember looking the first time in that moment? Do you think oh, I looked at this last month?

Shaya 8:53
Yeah, I was like, I was sure this is gnarly. Like, how can you be? And like, I don't know anybody. And then I kept saying it can be genetic. And I'm like, we don't have anybody in our families. Like I kept asking my husband, are you shorting more do you have anyway? I was like, No, well, you

Scott Benner 9:12
know, you do that thing. We're in the middle of helping my son figure something out. And you know, when you first see a symptom, you go to the most odd, you know, doctors do it as well. What's the most obvious cause of this meaning? What do we see most frequently in most people? And then as you start as you start whittling away the possibilities, and it gets less and less likely that you have this thing, it actually is getting more and more likely that you have it because you've said okay, well it's not this it's not this, it's not this and as you as you eliminate things, you get closer to the answer. But in your brain, you hear like, you know, 1% of the population has this or 10% of the population has this or you know, it's very uncommon less than 200,000 people a year get it you think well it can't be me, but it's got to be somebody ratio.

Shaya 9:58
Yeah. Like about I don't know, a year before this diagnosis, I read an article, another article, something lady wrote in Facebook. And she explained all her daughter's symptoms, and she was like, we didn't know that we should be worried like these ones. She was paying a lot. She was like her. He were she was acting odd and all that. And she was just like, warning other parents to watch out for these symptoms. And then it ended up being type one diabetes. And I was like, Yeah, okay, so it can't happen. And I didn't even remember that. I did not remember it. And when, like, after my son's diagnosis, and after we came back to Canada, it was I was searching in space with type one diabetes, and I saw in like, a post, and I read it. I read this last year, and I didn't even remember. Here it is. Right. So

Scott Benner 10:57
how long ago? is it now? 2019? Yeah, November 2019. Okay, so your, your year and three months ish? Like right around there? Yeah. How are things going?

Shaya 11:10
I'm not bad. I would say it's, we're trying to, like, tighten up the range for him. But I had breakfasts are hard. And the school is really hard, because they have very strict rules at the school. And he's in a provincial plan here. It's called NFS. So they under this provincial plan, we sit with the nurse and set out the plan. And we don't have many choices in the in like, there are some choices for the parent, like, do you want to give five grams of carbs here, or 10 grams. But most of the places not like many choices. So then these plans that are then the nurse goes to the school and teach the EAS that are present in the school to follow that plan. And they are not allowed to do anything outside of that plan. I said, So yes, they're very strict. And then I can I can really play with things. So one, like we try to have him eat the same breakfast every morning, give him the same amount of insulin. But then one day, he goes up to 300. And it stays up there. The next day he dropped flow. I'm like, he was the exact same thing. I don't know what to do.

Scott Benner 12:29
Is he? How's he getting his insulin through a pump? Or through injections? Yeah, he has Omnipod. He is a pump? And do you see maybe differences on different days of the infusion, like the first day maybe works differently than the second day, then the third day, etc.

Shaya 12:45
I shouldn't start dragging. And we just got the pump in November. Okay. So it's been only like two months. But I should have had a good idea. I should track that.

Scott Benner 12:54
It's an interesting, it's interesting to look at also different sites. So different places on the body may affect absorption. And when that happens, then you may need you know, more basil on your leg than you do on your belly, for example, that that kind of an idea or maybe, you know, at the very end of the infusion or the very beginning of it, it might not work as well as it does in the, you know, many hours in between. There's stuff like that he's using the CGM. Yes. Which one with Dexcom Okay, and so that's interesting. His he's eating the same exact thing every day are other meals more difficult than

Shaya 13:34
So, our dinners are. So we eat heavy dinners. It's just our family time. So I cook the main meal for dinner is usually high protein, high fat probably. So he does go high, right, like on two hours after eating dinner. So eat at 730 ish, and then he's his stocks go up at 930. And I notice I just can't exactly predict how much insulin he needs. So I give him like I have an alarm set to give him some insulin at 930 every night. I do it but I am scared to give him too much because I don't want to wake him up and then some nights it's just not enough. So I will be correcting like to 1230 constantly given another half you need another half.

Scott Benner 14:27
Yeah, you you have definitely fallen into the trap of I don't want to do too much so I do too little and then I stay awake until my eyes fall out of my

Shaya 14:39
ears. Not every night. Some nights I'm great. They're like perfect. We just go with a steady till the morning. But I like I give one unit and I'm like great or like attract the food. Like for example. I know. It's someone he needs three units at 930. So I give him three units and it's perfect. But it doesn't always work. we'd all like the same food and I haven't tracked all the food, the ads all. Are your are your meals culturally, like different than an average Canadian meal? or? Yeah,

Scott Benner 15:12
they are. Yeah, so I don't think I've had anyone on to talk about it yet. I should be, because I've had enough conversations privately. But I know that a lot of Indian families struggle with the the meals that they kind of traditionally use. And I was wondering if you were in a similar situation, but

Shaya 15:30
yeah, they probably are very similar to Indian foods or foods. Okay.

Scott Benner 15:35
Yeah, I know, the, there's usually a lot of rice, right? for you. Yeah. And then that becomes interesting. And like you said, then there's the high protein the high cut? Well, at least you know, about the protein and the fat rise that comes a couple of hours later. Did you learn that from the podcast? Yes, yeah. Cool. Well, that's good. I'm excited about that. Have you considered things like, there's ways to manipulate insulin. So if you, if you know, for certain you're gonna see that rise 930, every night, it happens, you could use a heavier basil rate starting at like 830, that maybe runs for an hour and a half or two hours to try to stay ahead of the rise and keep it from happening, you could try and extended Bolus from the meal, where you might take the amount of insulin that you're using for the meal, and then go look at all those corrections usually make, figure out what the least of those corrections usually is. And then you say something like, you know, we're going to, I don't know, I'm just using, like pretend numbers. But let's say it's four units for the meal, and you're correcting with a unit and a half. So maybe you say, we'll push the button here, we'll Pre-Bolus four units, and then we'll tell it to put in two for like, maybe like 70% now, and the last 30%, you can have a drag out over an hour and a half. And you could almost kind of create that wall with that extended part of the Bolus. But you a lot of people make the mistake of trying to. So stopping a late rise with an extended Bolus and extending a Bolus for pizza can be different. Because Yeah, because sometimes people use pizza as an example, because it goes in it doesn't necessarily hit you very hard right away, but then it ramps up and gets you later. So you need less upfront. More in the backend, where with this, you need what you need up front Plus, you need more on the back end as well. So there are a little ways that maybe you'd have to be seeing it every day for certain to do something like that.

Shaya 17:39
Yeah, I have to try those. I tried. Extended Bolus for a little bit. I just didn't like it. It was like I couldn't figure out how much exactly to add. It just was frustrating for me. So I started doing this other one to track each food and see how much corrections I gave for each one. And then but I'm still scared. So like, for example, I know. We eat rice almost every night. So rice with stew. So I say okay, so he had this much meat. And I know that that amount of meat and rice and stew probably needs 1.5 units at 930. But I'm scared to give it because he's sitting at like 80 and he's asleep. And I'm like okay, so he's 80 and I want to give him like 1.5 units. So I'm scared to do is I only do half and then I end up doing another to another one. In the next few hours. Yeah.

Scott Benner 18:45
What about what's his basil rate an hour at that time a night?

Shaya 18:49
It's zero point. 15

Scott Benner 18:52
Oh, it's how much is he weighs he little

Shaya 18:55
he raised about us not to like Oh, he's actually always a bit like and one second. Let me see. I have his way. I wasn't sure

Scott Benner 19:13
if you were looking for his weight or trying to find a way to call him chubby without sounding like you were calling him but I wasn't sure what. I wasn't certain what you were trying to do just so she tried to be polite or she looking for a number you know, what does he weigh?

Shaya 19:27
he's not he's not chubby? Well, he's like borderline I would say based on based on internet instead you're you're you're a little bit like close to being overweight or something but I don't think so. He doesn't look shabby at all. Yeah, so I found his weight he was 23 kilograms. I have to convert that pounds.

Scott Benner 19:49
I can do that too. One second. 5050 pounds. Okay. So now everybody's basil. doesn't follow any strict rules right like, point 154 50 pounds seems low to me.

Shaya 20:10
Duck these doctors said that too. He said maybe he is still like honeymooning. That's why it's slow.

Scott Benner 20:16
Okay. All right. So then that was my next question like is are you possibly getting help from the pancreas once in a while? Or not so so can I ask him? What's his Awan say? It was the last was 6.5 6.5 does? Does he have a lot of lows? Like under 70? No, no. So it does sound like then you're probably getting some help somewhere because I would just like if you made me just guess without you know ever seeing anything? I'd guess that is basil is closer to I mean, at least point three five somewhere up to point five. Oh, right. So that was my other thought is that can you get some of that insulin that you know you're going to need for that 930 rise in a basil rate like instead of the basil being point one five, you know, maybe eight 839 3010 o'clock and that hour and a half? They're like what if you made it more like I don't know, like point four an hour or something like that and then got that insulin You know, you're going to need but you still we're spreading it out a little bit so that if you decide you don't need it, you can just like stop the Temp Basal rate, and then you haven't injected a whole bunch and then you don't need it. Right. Does that make sense? Yeah. Oh, God. Yeah, I think you're just looking for ways to manipulate the insulin to do what you want it to do and be where you need it to be. Yeah. Do you have trouble with other foods like when you like if you go like, do something that's out of the ordinary and food do you do better with a Bolus ng g vo hypo pen has no visible needle, and it's the first premixed auto injector of glucagon for very low blood sugar and adults and kids with diabetes ages two and above. Not only is chivo hypo pen simple to administer, but it's simple to learn more about. All you have to do is go to G evoke glucagon.com forward slash juicebox g vo shouldn't be used in patients with insulin, Noma or pheochromocytoma. Visit g Vogue glucagon.com slash risk. Couple things don't forget the T one D exchange T one d exchange.org forward slash juicebox.

And while I have your attention, I'll remind you that the diabetes pro tip series begins at Episode 210 in your podcast player, and is also available at diabetes pro tip calm and Juicebox Podcast calm. Also at Juicebox Podcast, you'll find the series of how we eat defining diabetes afterdark and more. Check it out Juicebox podcast.com. Looking for support from people like yourself, find the Juicebox Podcast Facebook page. Wow, my lips stuck to each other when I said that. So I'll try again. Find the Juicebox Podcast Facebook page. It's private has over 14,000 members. And those people are just like you and having conversations about things that you're wondering about. Or just need some backup on Juicebox Podcast Type One Diabetes on Facebook, it's a private group, you'll have to answer a couple of questions to prove to the algorithm that you're real. And you'll be right in. Alright, he won the exchange.org forward slash juice box. Diabetes pro tip comm Juicebox Podcast Type One Diabetes on Facebook. Let's get back to share. Do you have trouble with other foods?

Shaya 23:51
So what I do is when when there's something new and I haven't tracked or no idea about it, I do exact exact math. And I put it in and so like I do I do exact math, but I do like put it in I do a little bit more insulin. And then I just watched him. And most of the times it's actually good. Yeah. And sometimes like if I see just going a little bit downward, I just do a Temp Basal minus i know 60 or 100 or something and it's just go Okay, gotcha.

Scott Benner 24:29
Yeah, that sounds like the way I think about it. So, I mean, what I can tell you is that over time, you get better at it in that you've had more experiences with certain meals and it just eventually you'll just, you'll just do it you'll put in the insulin and then you'll like it's been two hours later. I know it needs more and you're just going to do it even though the number makes you feel like they don't you realize you're just Pre-Bolus thing. In that second go round. You're really just Pre-Bolus seeing a rise that you that you know is going to Come but isn't showing on any of your data yet. So yeah, exactly, except for the data of historic knowledge from happening over and over and over again.

Shaya 25:09
So I know what happens every night. Like it's just it's not I haven't had a night doesn't happen.

Scott Benner 25:16
So why are you scared to do something?

Shaya 25:18
I don't know. Honestly, like, I hate that. When I have to give him juice when he is sleep. He turns like he gets so like, he jumps out and usually, like, hit my hand. And then the juice drinks all over it crazy when I want to give him to say, Hey, dude,

Scott Benner 25:40
did you ever you ever put the juice the boy, I'm sure this has happened, everybody, but you put the straw in and it creates some sort of a suction and the juices starts running out of the straw and you can't stop it. Have you ever had that? And it's, it's dark, and it's hitting you in the feet. You're like, You gotta be kidding me. And then you know, like, you get it cleaned up as much as you can. And then I'll like read, I'll say like Arduino you have to have a little juice. And I'll reach over. And if a drop of it should touch her anywhere. She's like, oh, you're spilling it. I'm not spilling it. Gravity is spilling out, leave me alone. But no. So I understand your desire not to give him juice. And I don't want you to either. But what I'm saying is, if it's proved it out this many times. You're just you're just ignoring reality. If you're doing that, like you're literally letting your fear stop you from stopping something you know is going to happen in favor of something that might happen, but that you don't think will happen. And that was not English. But you know what I mean? So go for it one night. It's Friday night tonight. Try it. Just go for it. I mean, what's the worst thing he drinks a little juice and you don't do as much the next time?

Shaya 26:49
Yeah, that's true. And I tell myself every night like last night when it was one of those night, I'm like, I'm giving him half a new unit. I know he needs more. And it's going to cause me so much though. I was up to two last night. I was like, Just give me one minute. We are done with it. But I have to I have this. Are you self

Scott Benner 27:13
flagellating? You're torturing yourself on purpose? Or will you? Listen, if it makes you feel better? You're at a place that I think everyone finds themselves at at some point. And now you just have to make the the more conscious decision to just do it. And so you can see what'll happen if you do it that way. Instead of being afraid you just got to put the fear away a little bit.

Shaya 27:39
Yeah. And I just listened to that Podcast, where you talk about that. And I think that was last week. I listened to it. Like, yeah, I can do it. I am in the process.

Scott Benner 27:52
Yeah, good for you. No, I have to tell you, to me, it sounds like you're doing extraordinarily well. And you're just you know, you're coming up on the speed bumps and climbing over some of them faster than others. That's all. Do you feel like you're doing well?

Shaya 28:07
Well, I think so. I do great with pizza. He loves pizza. And we do have pizza night once a week. And I am great at it. No. Oh, I get like I I'm proud of myself for those small moments of victory. You got a lot of compliments from his doctor on on our last visit was like, You are one of the few patients I have doing this good. You're like 80% in range and like he was happy.

Scott Benner 28:41
I'm glad that it really does sound to me like you're doing well. So I would be thrilled. Are you kidding me? Every time I get something, right? I just like take a half a second in my head to be like, Yeah, I got that. But then once it starts showing it to me over and over again, then you got to just trust that it's gonna happen, I guess. But you'll get that. So I guess I want to I know we're jumping around. But I'd like to know what happened. So was he diagnosed in Iran?

Shaya 29:09
Yes. So that's it. That is his story for itself, like, so yeah, we were in Iran. And so he he's legit. So my aunt is a doctor, I said and my my husband has a lab in Iran. He's also a doctor and he has a lab. So he went to his lab and they gave us the result right away. And my aunt was like, I don't know any endo like trician and endo here in Iran in like our city. So let me call her up and she couldn't find anybody. And she just went online, googled it and found a doctor. And she booked an appointment for us right away. So we went to her office and she was like, rude and she Usually like, you know, like you just got diagnosed, nobody knows anything around you. Like my aunt didn't know mine. She's a gynecologist. And she got in there, and she's like, your son is short. And he's two teen. What's happening to him? He didn't she didn't even look at the results. And I'm like, Can you look at the results, like test results? And she's like, Oh, my God, your son has type one diabetes and like, yes, no, I think so. And she's like, so what do you want from me? Like, I don't know, like, tell us what to do.

Scott Benner 30:38
might be the one to answer that question. Not me. I i right now, I'm working on the word of a gynecologist. So I'm in trouble.

Shaya 30:49
So don't tell me what to do. I have no idea. And I'm not home. And I don't know. So she was like, yeah, you have to, we usually just admit to the hospital for 10 days. And I'm like, we are only in Iran for 10 days. Like, I don't want to spend my 10 days in hospital can do you have any other options? And she's like, No, you have to be admitted. I said, Okay, I want to go back to Canada. How can I go back? And she said, Well, I can give you some insulin, you give it to him two times a day, one unit, just like that. And we'd like breakfast, lunch, and dinner, and go back. So I came home, crying. And like we were crying. My husband and I we just were taking turns, one of us would play with Sudan and the other one cry and the mystery. So we got home to my aunt's house, and my uncle was home, who has the lab. And he was like, Don't even think about going back to Canada, it's a 24 hours trip. You don't know how he will react to the incident, he might be very sensitive to it. So you don't want to risk that just don't even think about it. So I really like it was just, and my grandparents were crying. And everybody was crying in the room. And it was the wedding night, right. So everyone should be happy. And it's amazing. And then we are all crying. And so my aunt called here, her best friend and her best friend is a head of pediatrician Hospital in Iran. So she called her she was like, Okay, what do we do, and she said, Don't bring him here, because we don't have endos full time at the hospital just take him to a general hospital. So in Iran, the hospitals are like general public, for people who can't afford to go to private hospitals. So the the Children's Hospital that we first wanted to go to is a private hospital, which is like really good. It's like the hospitals here. And then the public ones are just like, only people who can afford to go to private, they'll go there and it's not like very good. But you didn't have any choices really. And they said it's just the best option for you because they have full time and those so we got the the admins knows right away and because my aunt call and everything, so it was good. We got we got admitted. But they said we don't have any beds. So we had to stay in the ER for two days. And then they kept saying we can't give him insulin here. He has to be like admitted to the room to give him insulin. I was like the doctor said you would give him he was asleep at like 300 and it was a no we can do it here. He has to be admitted to the room. Then they will start. They gave him one. I have one like one IV at the beginning. But that was it. Yeah. So we were like mad and they were fighting with them. It was just bad. I'm you know, like, you're not home. I didn't even know that he was hungry. You know how they are hungry at the beginning after diagnosis. He was constantly hungry. And he kept saying I want the specific food. He wanted a chicken kebab. And it's 1am and whether you get chicken and have a red one, yeah. So because my mother in law, and we were like, just find the like, Is there a restaurant open? You can buy chicken come up, and then once they started making him she can get

Scott Benner 34:26
somebody to make informed consent. It's lovely that that you got somebody to make it for him. Oh, yeah. I have a question though. Um, so you're in. You're living in Canada, but I'm assuming you at some point lived in Iran. Yeah, about 15 years ago, I was gonna say how long ago was it? So do you feel like when you're there, do you feel like a foreigner at this point?

Shaya 34:53
I feel like a framer, I but I still feel like I have a different Culture, my culture right now it's more can you and anyone, but I still live there for 20 years of my life. Okay,

Scott Benner 35:07
so you're not a complete fish out of water while you're there, you just have a different perspective. Okay, so I was just trying to figure out if you didn't like if you had never known or how to like traverse the system there, or if it will just the system itself doesn't lend itself well to this problem. I actually looked before you came on. And I went all the way back to as far as I can go. And some of my my data like back to 2017. I looked for collectively, and the podcast is way more popular. It lives in Saudi Arabia, Egypt. And in that part of the world, like those are the most popular places. It's downloaded in Iran. It's downloaded in Iraq. It's downloaded in Afghanistan in Pakistan. It's pretty it's really popular in India. moreso than Saudi, but I just I didn't know if it was just like not, is it culturally not common for people to look for help like that? Or is there not even a pathway for them to look is English?

Shaya 36:12
Yeah, English. I was going to say currently, India, they are good with English they I live in in the in India, actually, for three years. I did my bachelor's degree there. Okay. So their English is really good. They are good. But in Iran, most people don't understand. I even introduced your podcast to a few people. And instead, if the English is good, like one of them her daughter is 13, I think and I said is How is her English? and her mom said, yeah, it's really good. She's going to classes and everything. I said, Yeah. Have her listen to this podcast. So I'm introduced to some people, but usually no, yeah,

Scott Benner 36:51
yeah. It's interesting, because the show is also fairly popular in Japan. But I think that's mostly ex Pats. I think that's mostly, you know, transplanted Americans living there. So it's just it's, it's interesting to, to see where it, it just makes so much sense that it's basically around where English is easily understood. But I'm glad I found you and that it helped them. And then it's maybe helping, but I think that that's just sounds extra frightening, because because you really did get I mean, even once you got to the endocrinologist there, they here take some insulin jump back on the plane, I count as bad advice. I Yeah, I agree with the advice. You got to not do that. But I wonder what would have happened if you put him in the hospital for 10? Well, what did you end up doing? Did you I mean, you're in the hospital. Now. How long? Was he there?

Shaya 37:46
Yeah, we were there for like five days. So I kept pushing. I was like, I know, like, I've learned everything, just let us go. And they were like, there was this one doctor, he was actually a resident. And he was, he hated me from the beginning. Like, he would be like, do these classes for us, and I will type whatever he was saying in my phone. And like, you know, like in Iran, they don't do that. They have paper and pen, everybody. But I don't I have my phone and I typed everything in there. And it was like, are you listening to what I'm saying? Do you even care? And you're on the on your phone all the time. Like, I'm just typing what you're saying in my phone. He was pushing back on, like, please release us. Like, I know, I really I've learned kept counting. I learned everything. And just let us go. I was like, No, I still have to quiz you on a few things. And he would ask me questions like, what happens if like he goes low? And I don't know what happened. And then the main doctor, the endo main. And though he was really nice, and then yeah, you're ready to go. So we said like four or five days that then Okay,

Scott Benner 38:59
well, you got up there a little Did you miss the wedding?

Shaya 39:03
So he was the night, the second night at the hospital. So I begged my son I was like, I came all this way to go my cut to get my cousin's wedding. Can I go? Oh, and by the way, so the hospital it's a woman only woman and children. So my husband couldn't go up to a room at all during those five days. And I was like, I'm just going out of my mind. I've been up 24 seven with him for the past few days. And so I asked them if they can temporarily allow my husband to come home and they said no. So my sister in law who was also supposed to go to the wedding, but Well, she was further as she came there and my son like she he didn't even know her like, she has her arms but they never met before like other than that trip, right? So she was like, No, I don't want to stay with her and then she brought her a gift a game and they started playing And then I was like, can I go? And then he said, Okay, go. So I resigned from the hospital to the wedding, I got there late. And then I, my mom had my dress with her and my daughter was there with my mom. And I just put on my dress, like, I didn't even do makeup or my hair or anything. And then in the dressing room of the salon, our family, they just like so many of them came in together, and they just had heard about strength. And then everybody just burst out crying. And then I'm like, I want understanding the laughing like stop crying. It's a wedding. Just leave it just let's think about it tomorrow. Don't

Scott Benner 40:46
well, everyone's already so emotional, probably from the wedding. And then you get this news. And just it's easy to start crying. I I have to ask you men aren't allowed in the hospital. Was that specific to that hospital?

Shaya 40:59
I think it's the only children's hospital or something. They only allow children and women like the moms can go with the children. It was a children's hospital. And the moms can go with the children because then the moms because you know it's a Muslim country, and the moms need to have her job. So for the moms to be comfortable and not needing to wear hijab on men. They I think that's why they put that rule. But it's awful. It's just like off like, how do you expect the mom to be up? We take it 24 seven. Like some of those kids, they were like crying all day all night. And the moms were all like you could just see we're all exhausted. Yeah, just I know that that's coming for a second.

Scott Benner 41:44
It's probably a rule that men jumped up to get some time off when their kids are sick, don't you think? Yeah. Well, we'll say the women have to go in the hospital. That way I could sit at home. Or they're male doctors.

Shaya 41:58
Yeah. But they only come in at certain time. So you know, when they are coming in a shot. They're like doctors are coming in. Everybody knows that men are coming in. Gotcha. And then

Scott Benner 42:09
and then everybody puts a job on.

Shaya 42:12
Yeah. Oh, they don't remove them. Nobody removes. I didn't wear my heels. Java. Nobody cared really. But the people who care they don't remove them. It's just that they are more comfortable. I think I see.

Scott Benner 42:24
Okay, now I just I want to cruise over without getting an explanation because I didn't understand completely.

Shaya 42:30
It's just a totally different culture like, like even when I went to pay for the hospital, the cashier the he was like, it's so the currency there is really high. So it's like it's 3 million. riyals you have to pay. I'm like yeah, I know. Like, do you want to go your call your husband? I'm like, No, just take it from my car is like, does he need to sign like, No, just thinking? Oh, my God, I can pay.

Scott Benner 43:00
Back in Canada. I buy bagels all by myself. Just so that's Yes, sir. Oh, wow. I don't need your husband to sign. Oh, it sounds like 1950s. America, except still worse than that. Yeah. Oh, we won't talk to her. Well, we'll wait till the decision maker shows up.

Shaya 43:21
Exactly. And it's not like that everywhere. But after a while they thought, as I said, it's just a public hospital. And usually people who go there are like that, like they are in poor families who only the husband is the breadwinner, and not even like good money. And it's like that, usually. And so it's the culture of the hospital, I would say not Iran. It's not like that.

Scott Benner 43:49
I see.

Shaya 43:50
That's why I was shocked to because I was like, even in Iran. I didn't expect that. I'm like, why do you want my husband like what's going to have so many women working and I'm so when you when pay for everything? It's not like that.

Scott Benner 44:04
Those people would be amazed that they were in this house because I don't get to decide anything. So they'd be thrown? Hey, how many is 3 million? How does it convert to American money? What did you pay for? I think it came to a $1,000 for five days. That's very reasonable.

Shaya 44:21
Yeah, five days, we didn't have any insurance, nothing. So everything together came to 1000 with the labs and everything because we came back and we claimed it here.

Scott Benner 44:33
Wow. Well, even that's lucky that it worked out that way. And it wasn't some massive amount of money that you couldn't come up with, you know, that would have been even crazier. I don't even know what they would do then.

Shaya 44:45
For sure. That was another reason like I was worried about Germany. I was like, if something happens here, I don't even know like where do we get the money? It's probably so much but in Iran. It's not It's not that

Scott Benner 44:58
neither of yours your euro Canadian said. Right. We are all kidnapped. Yeah. So it's not like it's not like even somebody. Oh, wow. Well, that's terrible. I'm sorry. How was that? How was the trip home? Did you have enough understanding that the plane ride home was reasonable?

Shaya 45:16
Yes, the plane home was reasonable. It was just I saw on our way to here and I lost my phone in Frankfurt Airport. And when I called them, and they said, Okay, come grab it. It's at whatever station. And when I went there, my daughter was sleeping on my husband's shoulders. So I said, Okay, so you sit here with her, and I take student with me to go grab my phone. Now, I didn't know that we have to exit the transit area to do that. And I grabbed through him without anything. So we didn't have Dexcom, of course. So I didn't take his matter, like blood glucose monitor. I didn't take any snags for her. I didn't take my credit card I took took nothing with me just my phone. And that's it. I think the like, in I wasn't experienced enough. So you know, like, you're diagnosed like 10 days ago. And I wasn't experienced enough in the situation to grab that bag or something for him to like, have everything in it. And then we had to work for three hours with, like Sudan and I, we just couldn't find my husband. When we got my phone. We couldn't find him. And we went to so many different places, we could not find him. And then he started crying, saying I'm hungry. So I'm like, okay, his blood sugar is probably no, I can't even test it. And I have been walking for three hours. And then I don't even have my credit card to buy him anything. I went to this the food shop to me, and the guy that was from Iran. And he said, I was like, Okay, so my son is very hungry. And I need to buy him something. And I will try to pay by my phone. Because I have like my credit card on my Apple iPhone. So I'm like, I can pay what with this and it wasn't working. So the guy was really nice. He said, don't worry about it. Just take it out. Let him have he have it. And so like you're lucky Yeah, but it was awful. And then finally, we found each other after three hours of working. But otherwise Other than that, the fact that as I said, like, I feel like I wasn't experienced enough to say whatever wherever you want to go, even if it's five minutes, just grab that bag bag with you to have it's nice to have the matter to have. What do you mean? Yeah, it

Scott Benner 47:44
becomes so second nature. Eventually. I just this morning, I was up here getting ready to talk to you. And Arden came in. She's like, hey, my Dexcom needs to be replaced. And she's like, would you give me a hand with it? And I was like, Yeah, sure. So I get up to walk downstairs. And my phone's just sitting on the desk. And even though now I realized her, her Dexcom is not working at the moment, right? It needs to be replaced. I still felt uncomfortable walking away from my phone as I walked away from I looked back at it and I thought I don't need that. She's not wearing a CGM at the moment. I don't need my phone. But as I walked away from it, it felt very, very unnatural to leave it behind. And yeah, but in the beginning, you're right in the beginning, you have to physically remind yourself, take these things with me when I leave, like like, because it's just not, you know, it feels like you're tied down. But that feeling goes away. But in the beginning, you're like, Oh, I have to have this stuff with us. And it feels like a burden. But it just becomes very natural. And you don't think anything of it. But that makes that makes sense. Why did it take so long to find it just because you didn't know the the area?

Shaya 48:50
No, because they sat where we came out of the plane right when we came out and they said you're not allowed to go back there. So the doors were one away out from there. And I couldn't go back in and he couldn't come out because he had three hand like hand luggage is and then it was sleeping baby

Scott Benner 49:12
with him. So you had to like literally find a way back to where he was.

Shaya 49:16
Exactly. And they said like the doors are one way. And then anywhere I went like they have like mostly it's a very big airport. So I went to a gate to go back in and they would say oh, this gate wouldn't end up where you want to go. And then I kept tracking with Find My iPhone. I keep tracking my husband's location and try to walk toward that that but then at one point I had to turn and then it started getting further away. It was crazy. And then I find this guy and like, just helped me please help me find my husband and then he's like, Okay, and then he walked with me for store and he was like I think I do have to go from this gate. And then I got into that gate and they were like, No, you can go from I'm here because your ticket says gate a and this is gate B. I'm like, but my husband is at the end of me. And they're like, No, you can go, oh my gosh, Hey, you

Scott Benner 50:09
know what all that that that experience? Obviously, you didn't know enough about diabetes to be very worried about it. But if right now you got separated from all of suresnes gear for three hours, would you be panicking? Like now that you understand the diabetes better? Do you think you would have had a different like, reaction? I would be panicking more than whether it was then I would think so. I, you know, I'm thinking about just now, Ardennes changed. I was like, Alright, so we tested, did the CGM change gave her some insulin for the number we had. And I was like in an hour test again, because I want to make sure we're still going in the right direction here and not getting too low or too high. And yeah, I just wonder, I guess you just have to do what you did, though, go off for your feeling, you know, kind of treat hunger maybe as lower blood sugar because it's, you're completely blind. Right? So you have to make some decision, I think you did a really good job with it. Honestly,

Shaya 51:07
I just had no idea. You know, like, at the beginning, they just tell you test every two hours and give this amount of insulin with food and Okay, I'm doing that. So and I didn't expect to be walking for three hours. I didn't even take insulin with me. Right. So I'm like, okay, just like, I guess he's okay. And then his doctor in Iran told me there was this once I was like, do I need to stay awake with him all night to make sure he doesn't drop low? And then she said, No, don't worry about it. He if he drops low at night, he will be so uncomfortable and tossing and turning and crying and stuff that you will know. But I don't trust that like, No, I know. I shouldn't trust that.

Scott Benner 51:51
That's not a very technical answer. Exactly. Exactly. You're coming shy? Don't worry. Great. Thanks. Oh, yeah.

Shaya 52:02
So back then I wasn't worried. I was like, Yeah, he drops? No, I would probably know. Right. So the doctor said so. Right. So I wasn't worried. But now I can't even imagine being three hours without his

Scott Benner 52:14
Yeah, bag. That's interesting. But I mean, it's somewhere in there. There is also a lesson that he was okay. So you don't I mean, like there's a middle ground, you have to find between vigilance, worry, and common sense. But you need time with diabetes to figure out the common sense part of it. Yeah. So it's interesting,

Shaya 52:34
and probably when, like they are older, would be easier for them to know their body and all that you probably know that, like, a younger kid, compared to an older kid would be easier to manage, you could at

Scott Benner 52:49
least ask them more pointed questions, he would think and try to come to a better answer. So is there anything that I haven't brought up that you meant to talk about? I want to I don't want to miss anything?

Shaya 53:01
Oh, um, no, it's just so one thing that I don't know if like, I wanted to, I was thinking I was still thinking about this to bring this up or not. But I know like, so many people in us struggle with paying for insulin. And that's, that's big. But again, Canada, it's very, a lot cheaper with the provincial health plans. But then in Iran, it's crazy. Like I haven't, I met a lot of people in the hospital. When I was there, there was, I think, five more kids, same ages to learn, just got diagnosed, we were like going to classes together and everything. And we had we made a group chat, and I've been in contact with them. And I think probably many countries go through this. But insulin just is so expensive there for them. And then the government announced a few months ago that they they want to stop importing insulin, and they just make insulin inside Iran. But it's the very old insulin called regular I think, what's the call I'm sorry?

Scott Benner 54:26
Regular. Oh, they're gonna take you back to regular and mph.

Shaya 54:30
Yeah, yeah. So in Iran, so they are making that so and they are forcing people to just use that instead of No, we're happy lentils and everything. So it was big. I just got a lot of media attention and people I don't know what happened with small quiet now. But I think it's because of the how much it costs. It's expensive. And they just decided let's do like created inside there on the butt. They only have access to the technology to create that. Okay.

Scott Benner 55:05
Trying to read online looks like it looks like in October, it says us sanctions cause acute insulin shortage in Iran. Millions of Iranians at risk for us sanction. Oh, I see there's no insulin out. Okay. This is a, this is a trade problem. And the way that the country is trying to cover it is by making older insulin probably because it's easier to produce, I would think, yeah. And you don't need Yeah, I would guess that's the idea. I'd have to

Shaya 55:34
and they won't be any access to pens. So they will have to inject with needles and like these kids, it's just, they have no access to palm. So Dexcom, nothing. Dexcom is not even available. Like it's, they can bring some some people can buy them by Dexcom from Turkey or other countries. But it's super expensive. It's like one, one Dexcom costs one month salary for them. And the likes I know someone she said, I'm selling my house, put the money in bank and with the monthly interest I can pay for my son's Dexcom. Wow, that's incredible. So they are struggling today. It's no pomp like I have one person who was able to finally find pomp for her daughter, but then with the sanctions and everything, they stopped having it. So they went back to injections.

Scott Benner 56:35
I wonder if the new administration in America is going to impact this at all? I wonder if it'll change because of that or not? I'm not certain. I mean, I don't know. I can't learn enough just looking at it right now to find out. But that's terrible. She sold her home.

Shaya 56:51
Yeah, yeah. So we were lucky. I feel really lucky and thankful to have access to all the technology and everything. And it's different. It's

Scott Benner 57:05
hugely different life. Yeah. I mean, they're, they're, they're genuinely talking about going back and using insulin that probably hasn't been regularly used in America for I mean, 30 years, maybe even know a long time ago. And and you can't count carbs with that, that now you're just giving yourself those like, inject some in the morning and jack some in the evening, you know, that kind of a plan, which is not much of a plan, especially a given that the that the the meal choices are going to be pretty, you know, hard on the insulin tool, I would think. Yeah. I'm glad you brought it up. I'll see what I can learn about it before I put this up. And I'll put links up with it if I can find something that makes sense. So how did you find the podcast? I like your podcasts in general. Yeah. Not podcasts in general. But mine specifically?

Shaya 58:03
Yeah. Well, I don't listen to any other podcast. I did anyone.

Scott Benner 58:08
Would you say this is the only podcast you listened to? Yeah, perfect. That's what I want to hear.

Shaya 58:16
So I love it. You you. I think you hear this probably so much. I love you. I love your podcasts. I love what you do, I hope. And I hope all the best for you for doing this. And, you know, I don't know, like, you probably don't want to have this on the podcast. But I was listening to one of your episodes. And you were saying like it was at the beginning. You were saying I don't want to run any advertisements or anything because I just love to do this. And I'm like, Why? I love what you do. You should run advertisement.

Scott Benner 58:51
Oh, was it a recent one where I was like, I'm just putting this episode up? I'm not putting any ads on it. That kind of thing. Yeah, yeah. Sometimes, sometimes I just have so much content, I want to get it out. And I you know, I've satisfied the advertisers for the week. And I just was like, well, I just I still want to put this episode up. So I'll just put it out without ads on it. And then yeah, it's just But listen, I appreciate that. I really do. I don't have any trouble. Leave it in the episode. I am. I want to. I mean, I want to put out a good podcast and it takes a lot of time and a lot of effort. And because of that, you know, I did start out not taking ads. I wrote a blog for a very long time where I turned ads down constantly. But this is a this is a podcasting is a time suck that is different than just writing online once in a while. And if I didn't I literally if I didn't take advertisers on the podcast, the podcast wouldn't exist. Because my wife because my wife would be like go get a job. So very quickly, she'd be like, you wouldn't just sitting around making a pie Cast? I don't think so buddy, get moving. But I love that it helps. But where did how did you find it? I mean, if you don't listen to podcasts, how do you find a podcast?

Shaya 1:00:09
So what I like when I was still in Iran, I posted about the Sudan diagnosis and my baby mama, mommy group or like, Facebook group, I don't know what it's called. But then it was a Facebook group for April 2015 babies basically. And I posted about they had gnosis and I was like, I have no idea what I'm doing. I'm just so scared. I don't know what's happening. And someone introduced me to someone else whose kid was diagnosed like a few years ago, and then that someone else introduced me to a Canadian group of parents of type one diabetes. And that's where I found about Juicebox. Podcast,

Scott Benner 1:00:54
marketing scam. I could not plan on purpose. That's for sure. So you're so you're in a Facebook group just for kids born in your like, day, month and year? Yes. Then you meet a person in there who moves you on to another place. And that's where you Wow, that is a that is not a straight line to finding something that's for sure.

Shaya 1:01:14
Yeah, so I found like, the lady was really nice. Like, a few years ago, my daughter was diagnosed, but she was I thinking us maybe. And she said, there is a group for Canadian parents. So just join that would be really helpful. So I joined that. And then I was asking so many questions are like, how do I control this and that, and then someone wrote a column saying, Yeah, just like, join, like, Listen to the sports podcast. It's amazing. And that's how it's, we'll see.

Scott Benner 1:01:41
I'll tell you what, you somebody suggested the podcast to you. It sounds like to me, because you were asking pointed, probably thoughtful questions. And they were like, you know, if you're looking, if you're trying to look that deeply into this, this is probably the place for you to be asking those questions. Yeah, that's Yeah, that's excellent. I'm so happy. I don't know who did that. But that's really lovely.

Shaya 1:02:02
There's a lot of funds in our Canadian group that isn't. So just like, I've seen so many comments like that. It's just goes down. Like everybody says, I've done it to so many people just go listen to podcasts.

Scott Benner 1:02:15
Thank you. I very, I very much appreciate that you can that the show's pretty huge in Canada. I mean, it's obviously, it's obviously the biggest in America. But after that Canada, Australia and the United Kingdom are sort of the next larger download places.

Shaya 1:02:31
You would expect that with the English language new and

Scott Benner 1:02:35
so maybe I have to stop worrying about how to get the podcast to be bigger and just teach people to speak English. That might be the quicker

Shaya 1:02:42
I was going to I was going to suggest the other I was going to say maybe you have to translate or, like have some translate, I don't know, I have

Scott Benner 1:02:50
to tell you, I have thought that through six different ways. And it just never works. Because if I don't know the the language that we're translating it into, then I can't kind of quality check the translation. And then I'm stuck. And I would never want somebody to say something that ended up not being correct. And so that's where I sort of get stuck on that, because I've definitely thought about that for especially Spanish speaking people. I mean, that seems like a big population that's underserved. And I have talked about Listen, the truth is if if, if an advertiser, you know, I'm not even saying one of them that I have now, but if there's an advertiser that would be willing to foot the bill for it, what I've learned is, it's just very expensive, because you have to hire professionals to basically listen to episodes and then translate them out. And it's not cheap. So it's not something I can afford for certain.

Shaya 1:03:44
And you have you have great voice. So I don't know how you find someone to have great voice command.

Scott Benner 1:03:51
I appreciate that. I am I you know, it's funny when I talk privately to people, and they're like, you know, how do I make a podcast? I'm like, Well, the first thing to know is that most podcasts fail. So you know, you can definitely try it. I said, but there are some intangibles that you just can't, you can't manufacture. And I do say sometimes, like I have a nice deep voice. And that's how, you know it's helpful to listen to. I find it my own life when I start talking. People just sort of like get mesmerized a little bit. I just think it's I don't think it's what I'm saying. I just think my voice is deeper. So yeah, a little little heads up there for me a little little extra boost. But I really appreciate you coming on and telling me that whole story. It's fascinating, and I appreciate it again, people won't know this. But you let me move your time at the last minute. I was having trouble. Yes. No, you were very kind. So thank you.

Shaya 1:04:46
No, no draw and I was happy and thank you for having me and talking to me. I'm great points and suggestions. You might help him to manage that nighttime riser. So I'll try those. When you send me a note. Let

Scott Benner 1:04:58
me know Yeah. Oh, for sure. Excellent. I would love to know how it goes. And I'll actually if you if you get back to me the next couple of months, I will put a little addendum on the back of this and let people know what you said. Okay, thank you so much. Have a great weekend. Thank you. Yep, you too. Thanks. Take care. Bye. A huge thank you to one of today's sponsors. Je Vogue glucagon. Find out more about chivo Kibo pen at G Vogue glucagon.com forward slash juice box, you spell that GVOKEGL you see ag o n.com. forward slash juicebox. I also want to thank my guest today. And thank you for listening, supporting the show, sharing it with others and all the other great things that you do. I'll be back soon with another episode of the Juicebox Podcast. Thank you so much for listening.