#1117 Bold Beginnings: Medical Team
Bold Beginnings will answer the questions that most people have after a type 1 diabetes diagnosis.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, and welcome to episode 1117 of the Juicebox Podcast.
It's been quite some time since we've made an addition to the bowl beginning series. But today's episode is in fact, an addition to that series. Today we're going to be talking about your medical team. And it might be a little different conversation than you're expecting. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community, check out Juicebox Podcast type one diabetes on Facebook. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout. That's juice box at checkout to save 40% at cozy earth.com.
This episode of The Juicebox Podcast is sponsored by us med U S med.com/juice box or call 888721151 for us med is where my daughter gets her diabetes supplies from and you could to use the link or number to get your free benefit check and get started today with us met. Hello, Jenny, how are you?
Jennifer Smith, CDE 2:02
I'm awesome. How are you today?
Scott Benner 2:04
I'm awesome, too. Together. We're awesome squared. Yay. Today for the bold beginnings episodes we're going to do your medical team.
Jennifer Smith, CDE 2:16
That's a good topic because it? Yes, I feel I'm curious what and what people have said, Yeah, I am.
Scott Benner 2:26
First one off the bat. First off, find a doctor who listens to you and your worries, not one who tells you it's all in your head and, and are totally not knowing what you're talking and you're totally not knowing what you're talking about. So it's all in your head. Interesting. Your concerns aren't important. Why does that happen? Jennifer? Why would a doctor hear my concern? And just tell me it's not real? I don't know.
Jennifer Smith, CDE 2:55
I don't know. That's a good question. I mean, on all ends of the spectrum, regardless of whether you have a child or an adult, part of being a medical professional is that somebody is coming to you for assistance. Right? And if you can say to them, let's look at this in a logical way. Let's look at this and your concerns. And let's figure the ones out that actually are relative to something that we can change. And what are some of the other ones that we can address in terms of like another avenue of discussion, right? But nothing is nothing is not important. So
Speaker 1 3:39
here's the problem is how do you know? How do you get past that white coat syndrome? Where you look at them? And you think well, they must know? Right? And and how long have you put up with being treated poorly before you make a change? And what if you can't change but if you live in a small town, and this is the endo That's true. That's it, you know,
Jennifer Smith, CDE 4:00
that's true. There are many, you know, places and I'm only talking nationally, but I do know, you know, internationally, it can be an issue to having worked with a lot of people outside of the US. Depending on where you live and what you have access to and what your network providers may be or whatever what you have access to makes, it can make a really big difference. You may not love the person that you go in to talk to. But you may need them just even from a prescriptive standpoint, you may really have to utilize them from that and you may have to outsource in another in another way. And that's that's sad because many times if you outsource, it will be you're paying out of pocket for something else.
Scott Benner 4:46
And keeping in mind that this series is for newer diagnosed people like this is a frightening idea of like you mean all this happened to me and the doctor might not be good. Oh, and how would I even know if they're good? This this person said What should I expect? Back in terms of my support staff, we found that there were many conflicting pieces of information when we were first diagnosed, and they were coming from different doctors and nurses within the same practice. Yeah, so, you know, so you're in a room with one person, they're telling you one thing, and then you come back three months later, and they're telling you something different. Also, no one explains to you that in a lot of practices, you don't see the endocrinologist.
Jennifer Smith, CDE 5:29
Or at least not very often. You're right, because there's there is Amin, if you will, a shortage of endocrine prac, you know, practitioners. And what you may find is that you have a nurse practitioner or a PA, a physician's assistant that you meet with in between the endo visits, you may actually only see your endo every six months, but you may see the other person in between on like, you know, a rotating basis.
Scott Benner 6:02
I used to think that if I used to think the endo had to physically touch Arden once a year so that the billing was legal, because she would kind of come in the room like Mary Poppins just kind of flowed in. She, oh, looked at the chart. Arden. How are you? And then she'd reached out and she would just touch her? And I'm like, Are we completing some legal liability right now? Like I've touched her? We can bill you. Weird. And then she just how are things? And then let me and she she'd lay down rub Arden sites a little bit, ask her a couple of questions. Look at the chart. You're looking terrific. Keep it up and then move up the chin load out the door.
Jennifer Smith, CDE 6:45
Or away on her umbrella or
Scott Benner 6:48
movies right now. I've never seen Mary Poppins.
Jennifer Smith, CDE 6:50
Oh my god. Oh, you are missing out. It's such a good movie. Both of them actually. The new one and the really?
Scott Benner 6:56
She cleaned the chimney or did she go up the chimney? Or was it the guy that cleaned the chimney?
Jennifer Smith, CDE 7:00
That's the chimney sweep. Oh, Scott.
Scott Benner 7:03
That was right.
Unknown Speaker 7:05
That was Dick Van Dyke. Nobody
Scott Benner 7:07
listening to this knows who Dick Van Dyck is. At least I got that right? Well, if they've seen
Jennifer Smith, CDE 7:11
the newest Mary Poppins returns, Dick Van Dyke does show up in it at the end. And he is very well. He's very old. He still does his little jig dancing and everything. So yes, I actually looked at my husband. I was like, I am super Rami is that his dancing ability? Like,
Scott Benner 7:30
you know, he was sitting in a corner and they were like, alright, in five minutes, hit deck with the adrenaline. Out here he's like, do the dance. Do the dance. Then he was done.
Jennifer Smith, CDE 7:43
That's funny. Yes, I'm that makes me sad that you have not seen Mary Poppins. Come on Scott up a spoonful of sugar. And you're talking about diabetes? No, I'm
Scott Benner 7:53
just kidding. I saw I saw I saw the first episode of She Hulk last night. This might not this.
Jennifer Smith, CDE 7:59
Probably. I don't even know what that is.
Scott Benner 8:03
I wish I had known how to advocate for myself. When you don't know everything. Especially in the beginning, I knew there was more. And I knew it could be done differently. But I didn't know the words to say to create the partnership with my Endo. Instead, we often felt like opponents looking back, I can see how a change in language and better questions would have helped in our relationship. I struggled in that place of knowing I didn't that I didn't know everything, but not sure if our endo was going in the direction that we wanted. She said spoiler alert, they are actually amazing to work with. But in the first six months, we were in constant battling. Right?
Jennifer Smith, CDE 8:42
I think there it sort of defines to the the underlying lack of the right kind of explanation at diagnosis, right, all of the things that get sort of spilled out to you. And you only you only can absorb so much, especially with now this turned around in life, right? Something that's bringing something in you didn't plan to have to manage and take care of. So things like you know, all of the language around diabetes management, anything from going into a clinician, it's really just being very upfront and saying, You need to explain that better. I don't know what that word means. And you have to step back and just pretend that you are saying I just don't get it. You're not saying that you're not a smart person. It's just that this is new. I don't get that or I've bring in some of the things maybe you've done the online community kinds of investigating and you've seen some things talked about and you're like, that's what's happening for us, but I don't know, is this right? Should I try? You know what I've read about? Go to your clinician and bring it up and say I've seen this too. Scott started seeing this product or whatever. You can open doors in terms of discussion, too. Because you know that doctors aren't mind reader's either. They don't know what you don't know.
Scott Benner 10:12
It's an absolutely interesting situation because you're 100%. Right, like, well, it's easy to blame the doctor for not saying everything they should have said, right. They don't know what they should also they don't like when you when you're a doctor, and you use the word Bolus 800,000 times a day. There's no world where you think this person doesn't understand Bolus you don't even think about that Bolus is the to them. It's a word that they just use, which is why and I will absolutely without embarrassment, pimp the the defining diabetes series in the podcast because
Jennifer Smith, CDE 10:45
I was gonna mention it too. So I'm glad you brought to it.
Scott Benner 10:49
There's simple terms that we explain simply so you can listen through them. They're short episodes. And when you leave the episode, you go, Okay, I know what Basal insulin is. Now, I know what a Bolus is. Now, I know what an algorithm is. Now, I know what you know, there's so many people that come on this podcast that will say things like, I didn't know, I was MDI until I heard defining diabetes. Like I knew I gave myself shots. I didn't know anybody called an MDI. So then when the doctors talking, and they say MDI very quickly, you're and you're sitting there going, I don't know what that means. But I don't want to say, I don't want to say anything, right. And then quickly, that feeling can turn into animosity. You're like, why are they talking to me in ways I don't understand. And so, you know, it helps if you help yourself too. And if we're being fair, the doctor shouldn't assume you know those words. Correct. Especially in the beginning, correct. I
Jennifer Smith, CDE 11:38
mean, the random, you know, time, I might take a pause with a friend at a mealtime where I, you know, they don't have diabetes, they know that I do, obviously, I'm like, I just have to Bolus, you know, for my food. It's, it's kind of like the deer in the headlights sort of pick. Jenny's just doing her thing. Like, I don't know what she just said. But we're gonna go back to our conversation about whatever, when she's done with this thing.
Scott Benner 12:05
She needs a bowl. So somebody got her up.
This person says, I was constantly told not to adjust my own insulin, or my insulin to carb ratios, or my basil. And if I did, I got in trouble. And several times, I got in trouble for doing it without permission, which this is an adult who's now being told, you can't do things. I felt bad at first. And then I stopped asking for their help. So to this day, they are always surprised at how the settings look when they get the pump information. But it really is. Okay, so to adjust things for yourself, so there's this thing. I don't know the movies getting old now at this point, but you remember the Madagascar movie? The Yes, the animated movie. So there are times when I tell people, you just have to act like those penguins. You just smile and wave. And wave? Yeah, I won't touch it. Don't worry. Do you have any idea how many people send me notes that say the doctor took my pump for me changed my settings, I thank them walked out of the office, put them all back and kept going. Right and it but again, if you're newly diagnosed, and you hear that, that is not comforting. Like you mean, I know better than the doctor? Or what if I don't like then there's that indecision like should I go with what this is what I see from newly diagnosed people most often is the uncertainty. And it all stems. My best estimation, it all stems it's easy to say, like the, you know, the gaps in our healthcare system. But it's the gaps in what's reasonable. Like you can't see your doctor constantly. You can't see your doctor once a week, that's not going to work. Right? Right, every three months is too often they don't know you, you know more than they do. They're trying to go off of a static piece of information that you bring to them. They might not even be that good at it. You're bad at articulating what's going on. Because you get in there and you clam up a little bit because they're the doctor and you don't want to say anything and blah, blah, blah. And so it's it's bad communication. It's all it is. It's bad communication. The same reason you have trouble in your marriage, you have trouble with your kids, you have trouble with teachers, you have trouble everywhere, you are not communicating well. And it's a two way street. And so if one of you is doing a good job, and the other one isn't, it's still not gonna work. It's a tough position to be
Jennifer Smith, CDE 14:28
in. Oh, and I think from a standpoint we're talking about, you know, medical team, right? You should have a team approach in which you are a team member. You're not the stand back, let the team do it for you. You are a piece of this team, which means that you may have an endo you might have an endo and maybe a nurse practitioner or PA. You need to have an understanding of what can our communication be like how often Can we kind of check in with each other everybody, for the most part has an electronic medical record with the ability to send a message and get a response. It may not be as quick as you would like it to be. But you may get a response. But also, that team should be made up of not only an endo, but also an education partner. Yeah, right. I endos are an over the many years that I have been working as an educator, I only just really like thought about the fact that endos are not educators know, you may you may find a really good Endo, who does talk you through things and does explain things and really does the work kind of collaboratively with you. But I think real education comes from an educator who you can sit down with in a more lengthy visit. Yeah.
Scott Benner 16:00
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Jennifer Smith, CDE 18:23
think another piece within that is take take some of what the doctor or you know, clinician might be telling you newly diagnosed, a lot of it is a little bit more experimentation than it is with lengthy years with diabetes and some understanding behind that, right. So take some of those things. But the next time you check in, bring back and say we applied these things that you told us should be working. This is what happened, whether good or bad, or you know what you wanted to happen or not. You have proof to be able to say we did try this. We next tried this, this seems to work better for us. And somebody should work with you then. Yeah,
Scott Benner 19:06
and I think there's a there's a technique and conversation where you don't you don't put somebody in like a power situation over you. But you do act a little referential towards them a tiny bit. You know what I mean? Like you don't want to come in overpowering the doctor, because they're gonna they have a personality too. They're either going to push back because they don't like the power structure or they're going to be a timid person. And now you're not going to get their thoughts anyway because you're just kind of going at them. There is a way to center yourself. Say what you need to say stick up for yourself without being aggressive. And there's a there's a middle ground in there. This this person said try to find a doctor that works with you and doesn't boss boss you around. The first doctor I saw after diagnosis, walked into a room this harsh and told me that I had to eliminate carbs or else I would risk In amputation, if my certified diabetes educator, mom hadn't been in the room, I might have actually believed that. So my mom yanked me out of there and told me that I needed a doctor who didn't use scare tactics. And who would teach me instead?
Jennifer Smith, CDE 20:14
Yeah, absolutely. There's,
Scott Benner 20:17
I think, I think it's possible that doctors can become jaded. I have a friend who has been a police officer for a very, very long time. And he has to battle against the idea that every person he sees, is trying to get over on him lied to him, or is breaking a law. Sure. And I wonder how many people you see ignore their diabetes before you just think I'm going to come in with a club and just beat this into their head? Right? It's just it's how it that's my expectation, like, how many people did that doctor gave good advice to before they just gave up? You know, right, right.
Jennifer Smith, CDE 21:00
And I think you know, what's a little bit different, age wise, is that, for the most part, while there are kids with type two diabetes, as a child diagnosed, majority of the time, it's going to be type one. Right. And so within that is an endocrine practice that has a little bit more specialty and understanding specific to type one diabetes. Whereas those who are diagnosed as adults, even young adults, oftentimes need to do a little bit of homework about the endo that they're going to be seeing or working with. One of the big questions I always have asked, whenever we've moved, and I've had to change practices, is I call the office and I ask, how much of your practice or who in your practice, sees the majority of people with type one diabetes, you know, if you're going into an office space, where 10% of the people that they work with have type one, it may not, it may be a really, really awesome Endo, your first experience might be that this person is really willing to work with you. So don't certainly turn away from them. But they may not have the experience of an endocrine practice that more so specializes in type one, right? So doing a little bit of your homework, if you have the ability, early on, that can help to
Scott Benner 22:37
add on to that this person said don't assume that your pediatrician or your primary care doctor even knows anything about diabetes management. And that's probably not as common nowadays. But there are still places more rural places where there's no endocrinologist or I. Because when I interview older people, they'll tell me all the time, like Oh, an internist took care of my diabetes for 20 years, I never saw an endo, you know, like, or my general practitioner writes me prescriptions for my insulin or stuff like that. And it's, it's some people just aren't in the position to see. And I don't, I also don't want to paint a picture that all doctors are going to be like scary or bad at their job or anything like that. I'm sure there are plenty that are absolutely terrific. But the terrific ones aren't going to lead you to this podcast, where you're like, What the hell is happening? You know, like, it's, it's, it's going to be in these situations. And these are this is real feedback from people. I had to figure out that my doctor was being super conservative with guidelines. And they weren't telling us information because they thought it was too complicated to tell us. So this is an interesting scenario. I've talked about this before it's hurtful to hear. But the doctor makes a snap decision about your intelligence. It just happens. They look at you, and they think what can this person handle? And it's they're not always going to be right, they're probably frequently going to be wrong. I don't think it's a medical thing. I think it's a human thing. And then they can find themselves in a position where they're doling out the information on a level where they think you can handle it. And sometimes you have to tell them, I need all like, some people want it all right now, like, if you're one of those people that tell me everything, I'll let me deal with it. Right? And if you're a person who's not put your hands up and say, Hey, can we go a little more slowly? I'm overwhelmed by this a little bit, right? Like you can tell them who you are, instead of letting them decide who you are. Because I think I've seen it happen in both directions. I've seen like very kind lovely people get overwhelmed by information and I've seen people who are voracious to have information who have held back from them. Right.
Jennifer Smith, CDE 24:49
And I think that also goes with doing a little bit of homework on your end, honestly, to be aware of what it is that's important to discuss knowing time constraints of the visits that we have with clinicians these days, your visit will not be three hours long, despite the fact that you came in with a list of 100 questions and you're the person who wants them all answered right now, a guarantee as much as the doctor may want to, they don't have, they don't have time for that. And it's unfortunate. So come in with the top priority of I need to address this, this and this especially nice, newly diagnosed where it is a little bit up and down, you're learning you're navigating through things like insulin needs and changes and all that kind of stuff. So what are your priority, you know, needs right now that you want answered that you want clarification around or you know, those things that you just need to understand? Because that can help direct the course of that visit, as well.
Scott Benner 25:51
Yeah, man. It's interesting. I'm reading through some of these and we've talked about some of this stuff. And I just sort of made a point that I just wish I would have waited to see this person's thing because she just says I wish people would have stopped telling me what I could handle. Yeah, that that was a big one. Because
Jennifer Smith, CDE 26:09
they don't know you personally. Like you said, You Are you were Joe Schmo. Nobody knows anybody. Yeah,
Scott Benner 26:19
this person makes the point when you have questions, you can call your end out, day or night leave messages, there's services they can get back to you. There's other support at the hospital like social workers, child life specialists. Jenny used to work at a hospital right? Doing nutritional stuff, like there's people there you can talk about nutrition with Yes, ask for the services, don't just assume they're going to give them to you. Correct. Let's see what else we have. I think a lot of people don't realize they actually do have a say in their care. It was difficult for us because my husband is an ortho. He was leaning towards doing everything by the books. And I was reading and listening to all the podcasts and all sorts of things. And I wanted to derail this train quickly. And he thought we were being told truths from the hospital, we came to a common ground after a little while. So I read this one, because this is a common thing that people with diabetes have said to me when my daughter was diagnosed. And then I say to other people, there is an amount of time and it is not a long amount of time, where you will know more about this than the people who are helping you. And maybe you'll get lucky, it's a weird thing to say and have a practitioner who has type one diabetes, and thinks about it the way you want to think about it. If that's the case, you're probably really going to have a nice smooth time of it. But if you're just talking to a lovely person who wanted to help people and found themselves in endocrinology and are reading from, you know, books and charts are supposed to follow, there'll be a moment where it's not because their knowledge is lacking. It's because you're in it all day long, and they're not. You're gonna know, right? And then what's the, then the hard part is to make that leap to actually trust yourself, like trust your gut, like this is wrong, I need more basil, or I you know, my carb ratios, not right, or this shouldn't be happening this way. Instead of just asking a disembodied voice on the phone a year into your diabetes, what do you think? Because I mean, Jenny, you do it for a living and I see a lot of people's stuff. You can make an educated guess when you see a couple of graphs, yes, but you are still guessing. Absolutely.
Jennifer Smith, CDE 28:40
Without details, you're still guessing. And that's where, you know, when you say, at some point, you will know more than your clinician knows, I think it's you will know more about your navigation of diabetes, then your clinician knows because your clinician isn't living it for you. And you those are some again, from a communication standpoint, you have to communicate that to your doctor. Let's say the doctor is the one who said to just this way for soccer every single Saturday morning, and you tried that, and you tried it and you're like that didn't work. This is what's happening. So let's try this. Let's do something different. Then bring it in and proof again. Say we did we tried what you told us to try. It didn't work. But it's working this way for us. We figured it out. So in that case, yes. Do you know more? Absolutely. You know more, because you are living your diabetes?
Scott Benner 29:43
Yeah, there's a moment where you know it's true. And you just have to believe it. And there's a moment where you have to remember the old adage it's easier to ask for forgiveness than permission. So because then you're going to get caught into situations where Are, you come back in and you're like, look, we made our basil point five. And it was point three, and the doctors gonna be like, well, who told you to do that? And you're gonna say, my kids blood sugar told me to do that when it was sitting at 150 all the time. And now, by the way, look, it's 95. So I figured this out, say thank you. I always, I always think that sometimes when people are giving me crap, I'm like, what you can just say thank you. And let's move on, like I did your job. Like, like, just right, be cool. Do you think there's, this is sort of an unfair question, because I don't know how comfortable you'd be answering this. But do you think there is that, that God Complex with doctors, that they don't want to be wrong? Or they don't want to appear to be wrong? Because then you lose faith in them? Like, what is that? What stops a person from going? Wow, I can't believe you brought your agency down three points without me great job. Like, you don't
Jennifer Smith, CDE 30:53
right. And I think it in a way it's it's that god complex kind of term is, it's a harsher way to say what I think is a doctor has gone to school for an awful long time has really learned has applied in a clinical sense, all of this book information, right? And it's not that they're displeased. I think on a personal level, they're not displeased with success, at least a good physician is not in fact, they should be praising you and saying, Hey, how did you do this? You know, let me learn a little bit because it may help me to help others who have similar, you know, but I think they're disappointed that not that they don't have diabetes. They're like, geez, give me diabetes, that I can learn about this better. But I think they don't have the personal experience. So that there is a little bit of sense of feeling like, but I know, because I went to school for all of this. Right?
Scott Benner 31:58
Yeah. You know, I used to tell people in the, in the past on the podcast, if you listen to older episodes, I'll tell you don't go into the doctor and tell them you learned this on a podcast. It'll make it easier for you, right? And you think about it, right? How do you become a doctor, you get an undergrad degree, you have to pass the MCAT apply to medical school, complete your training in medical school pass like, I think there's parts one and two of like this medical licensing exam, you have to get into a residency program, complete your residency program, and then you have to graduate from medical school, you've done all that. And I come into your office and I go, Hey, Scott, and Jenny said, Who the hell are Scott and Jenny?
Jennifer Smith, CDE 32:38
What do you mean? Do you see my awards on the wall? Right? And for a specialty specialties go beyond right? I mean, an endocrine fellowship is at its two years typically. So that if they go into school to be a doctor, now they've gone to school to specialized in what you walked into their office to talk about. So I
Scott Benner 32:58
do think that like that, on that very human level, sometimes like somebody must sit there and think, Oh, well, yeah, I'm a doctor. But I guess you could listen to a podcast if you wanted to, like I think a podcast is the new Dr. Google to people, you know what I mean? Which, by the way, back in the day, when the when the internet was first getting going, I get it. But at this point, no kidding, you can pretty much diagnose anything with Google. You can be you can be right about it. Like the old joke is that you know, you can find out anything you think is wrong with you. But if you're really thoughtful about it, I figured out some significantly difficult things about people in my family by just thoughtfully going through the the details I knew and Googling the things I didn't understand. Absolutely. Yeah. But I have I listened to those doctors, I'm sorry. I can't imagine. Like if someone walked in here and was like, You know what you should do? I'd be like, shut up. I have this I know how to do my job. And so I think there's that. I also always wonder about the fear the doctor must have, like, how did you do this? I don't understand what you did. And how do I help you moving forward? If I don't know what you did to get to this point, like I see both sides of it, you know, right muscle. And that's,
Jennifer Smith, CDE 34:15
that's where the communication part really, if you want a team, if you want a team, that on the back end of everything that you navigate and have figured out, something's going to come up where you're going to need your team. Yeah. And you want that collaboration. Some of it may be educating them. Like I said, You figured out that their strategy didn't work, then explain what you did. Because that may, that may bolster what they're doing in terms of or they're learning to help somebody else and learn you better. There
Scott Benner 34:49
are also countless people who come into the Facebook group and you answer these couple of questions and one of them is how did you find out about the podcast and more people than I ever imagined? and saved from my, from my doctor, my doctor. So it's great. There are plenty of people out there who are open to it. And you know, again, if you find those people just rejoice and move forward, you know what I mean people, because you might, you might get the exact opposite, it's I almost feel like this conversation is a lot like the one about putting your kids in school with diabetes. There are people who have terrible experiences with schools, and there are people who have amazing experiences with schools. Now, here's the last thing I want to say about this. You know, when you ask somebody about how's it going, how's your agency, and they go great, but then they don't tell you anything else. And then later, you learn the array, one sees like, 8.2, but it used to be 10. So it seems great. It is great, right? But you lack the context, when you ask the question. Sure. How is it at school? Oh, it's great. The nurse is terrific. Sometimes that just means I don't get pushed back, or we don't fight. It doesn't really mean they're doing great. And I think people do that with doctors a lot, too. I hear them say all the time. I love my doctor, you have no idea how many people I've interviewed whose health is tenuous at best. And when they speak about their physicians, they're fantastic. Oh, they're great. Sure. Oh, we love her. She's wonderful. You're a one sees nine and a half. Oh my god, she's salt of the earth, you have no idea. Big hug every time I hear you judge your doctor any way you want. I'm judging your doctor, by your health. Okay, so, you know, so if your health is not optimal. I know you're a good person, and the doctor is a good person. But it's okay to expect better, I guess is what I'm saying?
Jennifer Smith, CDE 36:50
Absolutely. And if you're not getting, again, you've tried what you know how to try. And you're not really giving getting any additional feedback to improve what you know, isn't quite right. It's time to potentially look for something better. Yeah. And
Scott Benner 37:09
I would suggest interviewing those new Doctor candidates, by phone or in person, if they will, before you switch? Yes. Because I've seen people switch from one to the other. And I also want to tell you, that there is a moment when you're going to have to look down deep in your soul and make sure that it's not you. So maybe you're I hate to say this, but maybe you're difficult and you don't know it, you know that crap? Right? It could
Jennifer Smith, CDE 37:41
be absolutely. And it's actually a reason that I really and I love the fact that on your website, you've got some endocrine resources. And I look at it every once in a while. I'm like, Are there any new ones in here that I've like missed any new states that actually have somebody that somebody's commented, because from a new standpoint, while there, there are a lot in there, there are not as many as I think need to be there. Because people with diabetes are all over the place. And there is not always going to be an endo. Doctor who fits. Yeah, this person is great.
Scott Benner 38:22
It's juicebox docs.com. And when you go there, you can click on a link, it'll generate a little email for you. And then you fill in the information it asks for. And if you think you have a great doctor, then we add them to the list so other people can find them.
Jennifer Smith, CDE 38:35
Yes, that's it's a great, it's a great resource.
Scott Benner 38:40
I wish more people would would make submissions, because it really is difficult to find a good doctor.
Jennifer Smith, CDE 38:47
It is absolutely and there are some cities in there that are not the typical like New York City or like Chicago, you know, there's some some smaller places or some areas around bigger places that have some good recommendations. Jimmy,
Scott Benner 39:03
I have to tell you at the end of this if you have a second the Yeah, going through and living with diabetes with my daughter, and then thyroid stuff. It's taught me stuff that has helped me in other parts of my life. It's helped me advocate for myself. It's helped me help my mom, I'm gonna tell you right now, my mom is alive today because of what I learned from Arden having type one diabetes, because
Jennifer Smith, CDE 39:29
because you know how to dig for more information and to find the right resource. And
Scott Benner 39:33
I know I know what's happening in front of me, a doctor told my mom that she would not live through a surgery she needed to remove cancer. And he was telling us, we're just going to manage your mom's pain until she dies. That is exactly what we were being told. And we kept looking and kept pushing and found another doctor who gave my mom the surgery she needed and that was it. Two months a year ago, my mom was given a clean bill of health, she is finished with chemotherapy, and she is back living her life again, she would have died about five months ago if I listened to the first doctor, right? That is exactly the truth. I needed an iron infusion. And nobody believed me. But I kept pushing, and I came with facts. And I was persistent without being a pain in the butt. And, and I got it, and it saved me, you know, over and over again, these things happen. My mom's blood pressure got wonky last week. And I called the doctor and I said, What are you doing? And he goes, Well, we're upping her blood pressure medication. And I was like, well, that hasn't helped, what else you're gonna do? And he's like, Why can't try giving her more I said, You know what else you could try? And he said, What's that? I said, you could try calling a cardiologist because you're a GP. And let's go. And he gets the cardiologist in with her. And my mom calls me two days later, she goes, Well, I'm dizzy today. And I'm nauseous. I'm like, why she was good reason. They got my BP down. And I'm adjusting to it. She's like, it's gonna take a couple of days, I think. But my mom was going from a top number of 180. And they got her down to like, 120. Why? Because the cardiologist knew a different medication than they knew about.
Jennifer Smith, CDE 41:21
And you know what I, I hear as you explain that, as well. I don't know how old your mom is. But she could explain why she was having the symptoms she was having. She wasn't just thinking, Well, I just have to live through this. The cardiologist did a good job of explaining that to her and saying, these are some of the things that you're going to go through until the meds are adjusted. Right. And your body has kind of come to the level that's appropriate. Yeah, that is a really good doctor, my mom,
Scott Benner 41:51
who said, yeah, she didn't know that in Iran that she definitely didn't somebody shared. Somebody explained it. Yeah. Well, anyway, so good luck. I hope you get a great doctor. If you don't pick up for yourself. If you stick up for yourself, do it nicely, because you're building a relationship with this person, trust your gut. Understand, you're going to know more than them at some point. And smile and wave when you have to be the penguin. Yeah, that's my advice, which is not advice, medical or otherwise. See you later. Bye bye.
A huge thanks to us med for sponsoring this episode of The Juicebox Podcast. Don't forget us med.com/juice box. This is where we get our diabetes supplies from you can as well use the link or call 888-721-1514 Use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us med. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.
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Test your knowledge of episode 1117
1. What is the role of basal insulin in diabetes management?
2. Why is carbohydrate counting important?
3. How can stress affect blood sugar levels?
4. What is the significance of regular blood sugar monitoring?
5. Why is it important to stay informed about new diabetes research and treatments?
6. How should insulin doses be adjusted during physical activity?
7. How often should blood sugar levels be checked in a newly diagnosed patient?
8. How should physical activity be managed to avoid blood sugar fluctuations?
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#805 Bold Beginnings: Illness Ketone Management
Bold Beginnings will answer the questions that most people have after a type 1 diabetes diagnosis.
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 805 of the Juicebox Podcast.
Well, you would think that I would have learned after saying that the Pro Tip series was only going to be 10 episodes, and now it's like 25, you would think I would have learned not to say we're all done, like I did at the end of the bulk beginning series, because here we are back with something that fits in the bowl beginning series. Jenny Smith and I are going to talk today about how to treat illness ketones. Please remember while you're listening, that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, it would mean a lot to me. And it would mean a lot to people living with diabetes. If you took a short survey that's available at T one D exchange.org. Forward slash juicebox. This survey helps move type one diabetes research forward. And it's something that you can do from the comfort of your home. It's also something that may open up other possibilities to you if you want them. And if you don't, doesn't matter. T one D exchange.org forward slash juice box fill out that survey helped move research forward. This episode of The Juicebox Podcast is sponsored by touched by type one, a wonderful organization helping people with type one diabetes, that you can learn more about on Instagram, Facebook, or at touched by type one.org. The podcast is also sponsored today by Ian pen from Medtronic diabetes Learn more at in pen today.com. And last but not least today's show is being sponsored by U S med. Us bed.com forward slash juice box or call 888-721-1514 to get your diabetes supplies the way we do from us med. You may remember a time when I told you we were all done with the bulb beginning series. Yes, that was a lie. So here we are.
Jennifer Smith, CDE 2:24
Okay, what did we lie? Or what did we not complete? I should say we might not lie. It
Scott Benner 2:29
wasn't a purposeful it was a it was we didn't know. So for today, I'd like to do a bold beginnings episode about how to deal with ketones. Because as I'm standing here or sitting, and Arden has now had diabetes since she was four, and she's 18. I would admit, I don't 100% know what I'm doing, especially around illness. So I think we should probably try to help people out a little bit with that.
Jennifer Smith, CDE 2:59
Yes. And I think for clarity there, too, I think you've had you've always been very bold with insulin, right. And so I, I have a sense that despite art and having higher blood sugars, you've attacked it with the knowledge of even if there are ketones there and you haven't tested for them, you're adding insulin, that is probably what we would recommend adding in excess of correction. That's helping to clear the ketones. So I think you've gotten away with it, for lack of a better way to explain, because you're just like, I'm not going to deal with the high. I'm just going to bring the high down and this much didn't work. So let's add more. You don't really have a science to how you're doing the more.
Scott Benner 3:50
And I do want to talk about that a little bit so that people have here's my last recollection of it. Arden had the flu, but she was well we both had the flu when she was like my god, four years old, maybe, like really little. And she and I are in bed together just like I mean, we were a mess, you know? And we that's when I learned how to use a lollipop to keep her blood sugar up. Because I was I didn't know what to do. She wouldn't eat. I think sports drinks helped a little bit but it was a lollipop I kept I kept them around. I was like here suck on this. And that she could kind of get away with
Jennifer Smith, CDE 4:26
it probably helped if she was nauseous too. If she had like stomach piece of the flu. Oh sweetness. Probably yeah, often sucking on things if you're nauseous can really help to calm
Scott Benner 4:38
the nausea action of sucking the sucking. Yeah,
Jennifer Smith, CDE 4:41
in fact, I mean, they have you know, in pregnancy, they've got all these fancy products, the preggie pops that they're called like these. They're literally just soccer by it. I mean, I got through actually the early part of my pregnancy is sucking on. They're made by the ginger people. They're just like they look like little All cough drops but they're a gram and a half of carb apiece. They taste like ginger. Ginger is really good for calming the stomach. So stuff like that. It's probably the reason along with supplying the sugar to keep her blood sugar up. It helped to calm some of the nausea. Maybe she might not have told you what she was feeling like as a four year old but
Scott Benner 5:19
well, you just messed up my my internet searching now because I'm going to start getting ads for preggy pop because I didn't I almost believe you that they existed. There are preggie pops, which are lollipops are also preggy pop drops, I guess. That women how about that. All right. Well, there's my there's my the ads. I'm gonna get served now. Google thinks I'm pregnant. Alright, well, that got off the track pretty quick there. Yeah. So. So what I remember from that time was, is that back then Arden was peeing on a strip to to see if she had ketones we Yes. We saw that she had ketones called the the sick line for her for her endos office. And I mean, the rest of it. I can't remember. Was it one unit for like, if our ketones were two, we were supposed to like put in a unit to bring our ketones the one? And is that right? Or whatever?
Jennifer Smith, CDE 6:24
It depends? Yeah, I mean, so you did, you did learn an adjustment strategy, based on like adjustment for insulin strategy to help to clear the ketones and if your blood sugars are high, and not only are you using the corrective insulin that either you're calculating, or your pump is helping to correctly, you know, calculate for you. But you also have to add on top of that based on mild or moderate or even large ketones, an amount of extra insulin to clear the ketones, and that's dependent on how much some some places recommend basing it on total daily insulin. Other places recommend looking at your Basal dose that you take or that your pump provides. And then dependent on whether you have mild or moderate ketones. It's either a 510, or 15% of that total daily Basal that you calculate, and then you add that on to your corrective dose. So let's say you know, let's say your blood sugar is high and your pump recommends two units for correcting that high. With ketones present, that correction is not going to bring the blood sugar down as effectively, but your ketones are not going to get cleared well. So we need to add on to that. And if we're saying mild ketones, let's say you need five to 10%. Let's say your total daily dose is of basil is 10 units a day 10% One extra unit. So you're gonna add on to the two units of corrective insulin, the one unit to bring your ketones down along with address the hi
Scott Benner 8:09
a couple of things here. First of all, what I realize now is that all that time ago, I thought they were telling me one unit for this number, but it turns out they may have been looking at other things about Arden's insulin usage that I didn't even know about.
Jennifer Smith, CDE 8:22
They could have been exactly. Okay. And
Scott Benner 8:25
the other thing I remember from that time was the abject horror because Arden's blood sugar was lower. It was like 90, and, and she had ketones, and the woman is like, so give her insulin. I was like, listen, she can't eat. And her blood sugar's 90, and a unit bill like Crusher, because she was little. And she's like, No, it won't. And I'm like what she's like, it'll just clear the ketones. That's a leap of faith right there. Because yes, yeah, I was like, wait, what so so you just kind of
Jennifer Smith, CDE 8:57
I have to say that your your clinical team then was a little bit more on the aggressive side of adjustment. Many people will go home with directions, if they do get anything for ketone clearance, they'll go home with directions that unless the blood sugar is above this value, you have to get the blood sugar high in order to give the correct IV dose and to clear the ketones with the adjusted ketone dose. Many clinics will not tell you to just take a unit even though your blood sugar's 90, and you're not eating anything. So it's a pretty progressive thinking clinic.
Scott Benner 9:33
There's, listen, I, the the problem is the reason I don't have more information about this is even though Arden is sick at the moment, we don't generally get sick in our house, or neither. And we don't get the kinds of illnesses that come with, like nobody vomits in my house. Right? Like, you know, families are either vomit or they're not, you know, like we don't we don't throw up and so I'm putting that on my tombstone. You're alive, Scott. Never really act. But so we don't have the problem with what we can't keep something down. Like it's not fun to drink or eat when you're sick. But Arden can she can power through it, right? Sure. So I've never really been in that situation. And I do take a lot of, I do believe what you said that we're just very aggressive with insulin so that even if Arden has been in a situation where there are ketones, we might not even know about it, because we're, we'd be bringing them down. Correct. There's a connection in there that um, oh, I know what it is. You hear a lot of people online get told. It's a variation of what you just said. You just said like push the blood sugar up so that you can put in a bunch of insulin. And I've also heard people told like, you know, Bolus but then drink like sports drinks at the same time. Correct. And that's
Jennifer Smith, CDE 10:54
actually I think, if your blood sugar is low, and you can take something in especially kiddos, often Pedialyte will sit, okay, sometimes just sucking on a popsicle, or like you did a sucker can be okay. Sometimes if kids aren't willing to take anything, put some honey, you know, in their mouth, it can get absorbed through the mouth tissue, essentially. But why would you leave ketones where they are and drive your blood sugar up just to take some insulin. So another strategy is to use some carbs that can be taken in and not cover those, okay? And then allow the ketone coverage alone without a Bolus for any of the carbs that you've intake, or you've taken in?
Scott Benner 11:41
What's the reason for that?
Jennifer Smith, CDE 11:43
The reason for that would be if your blood sugar was lower already, and you're worried, you know, Arden's blood sugar was 90, and you're like, No, we we can't give her a unit of insulin. This makes no sense to me, right? So had she been able to take something you would have essentially let the carbs go in without covering those at a lower blood sugar value? Because with ketones present, you need insulin to clear that.
Scott Benner 12:08
So correct. The blood sugar with carbs Bolus? Are the ketones. Correct? Right. This is this whole dance here is why a lot of people who are people who vomit, people, I can't believe I've designated there are people who vomit and don't but anyway, you don't even more prone to it. They often have a prescription for like Zofran in the house, right? A lot of type ones do that. So yeah, when nausea comes, you can treat the blood sugars treat the ketones if they exist, and have the safety of knowing that you can keep something in your stomach and not that I guess. I mean, let's just go over it. If you Bolus for something, and you eat it, but then it comes back out before you've digested it, then you don't have the impact of the carbs. All you have is the act of insulin. And that is the quick way to seizure Vil. Yeah,
Jennifer Smith, CDE 13:00
correct? Absolutely. I mean, it's the big reason that with stomach bugs, specifically where you are throwing up or potentially the opposite of that, right? Whether it's coming out one way or another, you're really not also absorbing everything that you're even able to put in. And because your digestive system is irritated. And with that we you say take in the carbs that you can and wait until you know it's going to stay down before you Bolus for it. And then reduce the Bolus for the carbs you ate by about 50 Maybe 60%.
Scott Benner 13:38
So some insolence happening, but not super aggressive. Correct? Yeah. Okay. All right. So now we're talking about illness ketones? Yes, these do land people in the hospital all the time, because then they can put you on a drip to keep your blood sugar up and give you insulin at the same time. They can bypass your digestive system basically and get your ketones down. Right. Can you tell people a little bit about why you don't want your ketones to be high?
Jennifer Smith, CDE 14:06
Yeah, absolutely. I mean ketones, ketones that are specific to illness and high blood sugar or ketones that are relative to lack of intake because you have a stomach bugs, we're talking about illness based ketones. We're not talking about nutritional ketosis are those on a ketogenic diet. Right. So ketones in general in an in a state where you're sick, it's like having waste in your body, right? You know, the ash that's kind of in a fireplace once you've burned the logs, right? That's kind of what ends up happening when you have the not desired ketones in your body. It's like waste product from having your body break down. Pieces of your body, right? And so your body tries very hard to flush that out. And which is The reason that we use to test ketones using urine ketone test strips, because your body will try to flush as much as possible out. Hydration thus is very important if you have ketones whether they're mild or moderate or absolutely high. Need hydration, I want to talk about like a water bottle an hour of hydration with ketones like flush, flush, flush, drink, drink, drink. But you so that's essentially the reason that ketones are present, your body doesn't have enough insulin to clear the high blood sugar. And that often blood sugar's over about 240 or 250. If they're left lingering high for hours on end, you're more likely, especially with an illness to have ketones show up.
Scott Benner 15:46
Okay, and this is just from the CDC. But decay develops when your body doesn't have enough insulin to allow blood sugar into your cells for the use of for use as energy. Instead, your liver breaks down fat for fuel a process that produces acids called ketones, when too many ketones are produced too quickly, they can build up to dangerous levels in your body. And decay in an illness situation can come on fast. And it can be deadly like, Yeah, seriously. Yeah.
Jennifer Smith, CDE 16:15
And that's another big one with that, you know, another testing piece that they often look at, if you do go in, and especially DKA, or electrolytes. And so with illnesses that are the vomiting kind of illness, so to speak, you may have a difficult time keeping in enough hydration, and electrolytes then get very off, which does not help in this scenario with ketones present. So I
Scott Benner 16:45
believe that beyond her, her initial diagnosis, Arden's only been in decay one time, and I don't know if she was in it or not. All I can tell you is that there was this one time, we had a kinked cannula that we didn't know about in a changed pump in the evening. So she went to bed and didn't get insulin, and then woke up in the morning, and was like, she had a really high blood sugar. And as soon as I saw it, I was like, That's odd. It's a long time ago. And I tested it. Change the pump saw the kink. And I thought, Ooh, Oh, no, no, no, this is bad. And you know, so I said to her, she was old enough to have a decision. It turns off, I said, Listen, if you can drink a lot of water right now. Hold on a second place.
Jennifer Smith, CDE 17:35
Yes. Are you defining a lot? Oh, much water is a lot.
Scott Benner 17:42
Well, back then. I, I told her to bottles, that if you can get two bottles of water, and I think I can get your blood sugar down in the next couple of hours. And she did not feel well. I mean, she felt terrible. And she kind of was like, I can't do that. And I said, that's no problem. But if you can't, we have to go to the hospital. They're gonna give you an IV and everything. She just like, I wish you could have seen me the water bucket action movie, she like grabbed the water bottle. She was like, just pushed it in. And I remember saying to Kelly like I put a timer on it. I was like, Listen, if you know, in three hours from now, like I said, an hour from now we're not seeing movement. But if we see movement that will go to two hours. And then after we get under a number, but I was making it up on the fly. I didn't know what I was like, You know what I mean? So
Jennifer Smith, CDE 18:36
you're actually at what you did was right in the timeframe. I mean, you're talking about not illness space, but but a pump failure really insulin, right? She didn't have any insulin. So in that case, right? You did the right thing, we recommend checking or looking at blood sugar after testing for ketones. And if you don't have a way to test ketones, assume with a consistent high blood sugar, that it's probably a pump site failure. Change it out, take insulin to get it down. Hydrate, check again, you know, I mean, now with continuous monitors, you have the ability to see where things are obviously going but if you don't really checking blood sugar is about every hour to two hours checking ketones somewhere between you know that timeframe, every about every two to four ish hours. Check ketones again, if they're coming down, great, continue with the water correct as your pump recommends, you can correct and continue to check your ketones until they're you know, down.
Scott Benner 19:36
So one of the more interesting conversations that I see online every year is around this. Somebody pops up into the private Facebook group. They're like, hey, my kid is sick, and they have ketones. What do I do?
You're getting your diabetes applies from somewhere. But is that a pleasant experience? Only, you know, here's what I can tell you. We've gotten gotten, we've received Ardens diabetes supplies from a number of places. None of them have ever been as good as us med. Us med.com forward slash juicebox or call 888-721-1514 To get your free benefits check. And you would do that to be part of a company that has an A plus rating with the Better Business Bureau who accepts Medicare nationwide over 800 insurances. They carry everything from insulin pumps and diabetes testing supplies to the latest CGM, like the Dexcom G six and the FreeStyle Libre three EU. And us med always provides 90 days worth of supplies and fast and free shipping, better service and better care is what you're going to get from us med a company that has served over 1 million people with diabetes since 1996. number one rated distributor index com customer satisfaction surveys. Who is that? Oh, that's us. 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To in pen to us med to touch by type one and all the sponsors that you click on. I just hit something while I was talking. I apologize. When I'm talking with my hands right now I don't usually do that. When you click on my links, you're supporting the production of the podcast and keeping it free for listeners. So if you want it in Penn, if you want to switch to us med do it, but use my links and if you don't want to, I don't really care. Do what you want to do. But if you're doing my stuff, use the links this all makes sense to you right? Don't forget there are also links to the other sponsors Dex comm on the pod. G vo Capo pen Contour Next One blood glucose meter. Wow, a lot of sponsors. Feel like I can't remember them all. If I haven't said your name yet don't get Don't Don't get mad at me. Now I set them. Yeah, I got it. I mean, you know, take the T one D exchange survey that links they're touched by type one we already talked about today. Just use my legs please. Thank you. Oh geez. I'm all over the place. I have to say in pen requires a prescription in settings from your healthcare provider. You must use proper settings and follow the instructions as directed. Or you could experience high or low blood glucose levels. For more safety information visit in Penn today.com. I almost forgot to do that. But then I remembered at the end and they have ketones. What do I do? Somebody who has had a bad experience with it or is afraid right away says good hospital. They don't even ask any questions. I go to the hospital to last but then other people come in and say Well listen, like are they able to keep food down? You know, can they drink a sports drink? You can give them insulin like how high are the ketones? Are they really large? Are they moderate? Are they small? Like you know you might be able to manage this on your own. It's a very it's a very interesting conversation to watch happen because there is fear from people who have either been in decay because of this or have been in a situation where they can't keep down food. And then there's the other people on the other side who are Like, I guess not yakkers. And they're like, you know, they're like, oh, no, you can manage this, as long as it's not too out of hand, if it's too big, you should go. And I always think, like, what a horrible situation to be in, you really don't know what the right answer is, you know, call the sick line for your thing. Some people call the sick line, nobody gets back to them for a while and correct,
Jennifer Smith, CDE 25:20
or they give them information that that's not specific to their individual need, because the sick line really isn't. I mean, if it's within your healthcare network, they could potentially look up your information and see what's there. But they really don't know the day to day, you know, nuances of your management and how sensitive you are and whatnot. It's really just a, an off the list of do this, then do this and then do this and adjust based on what your calculated insulin dose should be.
Scott Benner 25:53
It also gets messy are messy is the wrong word. It's gonna be funny in a second, because a lot of people have urine, Keystone, urine ketone strips still so they're like, why Amelia, get this, like, it's a baby or like, you know, a kid or like, I don't want to be it. That's why I don't know what you have in your house. But we've had a blood ketone meter for a very
Jennifer Smith, CDE 26:13
long time, we in fact, that's the only thing we recommend. Yeah,
Scott Benner 26:17
I use the precision extra. I've used it forever. They're not. They're not sponsors. I've just had it forever. It works great.
Jennifer Smith, CDE 26:24
And they're, they're nice, because the test strips come individually wrapped. So you don't have to open a whole bottle, which is only then good for 90 days after you've opened it. Unlike the ketone, the urine ketone strips, once that bottle is open, you might use 10 out of the bottle of 100 over a sick period of time or a day when you had a high blood sugar because of a pump sight issue or whatnot. But then, hopefully, you don't have to use the rest of them in the next 90 days. But really, then that that battle is like, done there. And you know, you're in ketones also. They're old information, right? It's a couple of hours old, comparative to real time being a blood value of ketones.
Scott Benner 27:09
Well, as soon as Arden got sick this week, like we got her set up in a room and the first thing I said to Kelly was like, Well, I'm gonna check her ketones, get the meter out, make sure we have it, you know, have a baseline like right now she doesn't have any that's good. But I guess I want to talk a little bit about what we're really talking about here is meet the need, right? Like you. Generally speaking, you have a need for insulin, you have a different need for insulin during an illness. And by the way, not all illnesses hit people the same. So right, you know, you could like Arden had ketones with the flu. But now more recently, she has a sinus infection. She doesn't have ketones with a sinus infection. You know, the Hoos and whys of that are not important just that sometimes this might happen. And sometimes it might not correct in general, in whether it's this ketone situation or not, you have a you have an increased need for insulin, and you're not meeting it. That's all. That's all it is. It's, it's scary. And it's different. And there's the piece about, oh, what if I can't keep food down, which I think ratchets up ratchets up the fear about 1,000,000%, because I can still remember being scared giving her that insulin when she was like four.
Jennifer Smith, CDE 28:20
Right? Absolutely. And I think there's a there's a definition, kind of to make between high blood sugar illness and ketones. And the main illness that really doesn't drive blood sugar up, in fact, you may run lower, and your insulin needs may look like they go down on the base level of what you need. But if you have a stomach bug, and you're running lower blood sugars, as we said before, you may check ketones and ketones may be present. And they may be more mild. They may even get up to moderate because what you're doing is you're now not taking in any food. Right? Your body has to derive energy from something so you get this low level of ketones more from a starvation base. This isn't driven because of high blood sugars, because your blood sugar's aren't high is driven because you're not really taking anything in and so then it's sort of like the question, well, I've had a lot lower Basal insulin needs, I'm not eating anything, but I have ketones, and now I'm supposed to take insulin.
Scott Benner 29:30
You know, and the other side of this too, is that like you mentioned it earlier, just there are starvation ketones, which you could also see if you were doing an ultra low carb diet, these do not put you into decay.
Jennifer Smith, CDE 29:43
So not not at all. In fact, many people if you've been tested just just so that you figured out how to use the machine, like in a baseline setting and you're not sick or anything. Check your ketones first thing in the morning. Many people actually have a really mild, low low level of ketones because overnight, your body's supposed to go into this sort of like fasting. It's not supposed to be digesting food until you eat at midnight, the steak and fries and cheese sauce and whatever it
Scott Benner 30:15
is. We you and I talked about this is episode 287. It's a pro tip called illness injury and surgery and actually in Episode 288 is the defining diabetes about ketones. Oh, I actually think it comes up also in how we eat episode with a person who was on the show, but you should go listen to you should understand the difference, but you know, keeping it to just illness. Okay, so let's kind of like, let's go back over what we've talked about. So sure, kids sick with two options, two sets two scenarios, kids sick and keep food down kids sick or your adult sick doesn't matter. Can't keep food down. So if you can keep food down, and you have ketones present, is there I mean, you know, me I'm like just thinking like, just use more insulin. But I mean, what did they do, like call the doctor.
Jennifer Smith, CDE 31:10
So obviously, calling your Health Care Protect practitioner is really it's an important first step. Based on what their recommendations I would even say, rather than a, you know, a PCP, you really should be calling your endocrine team, because they're the ones that could help to dictate well, how much more insulin to clear the ketones. The baseline is typically again, one of two formulas, if you want a more precise dosing rather than us take two extra units because you got you know, ketones present. And I know I need more, so this must be more, right. But you know, if you're using it, looking at your total daily dose of insulin, and then you may need about 10% more than what you average total daily, if you have mild ketones. If you have moderate ketones, then about 15% More of what your total daily dose is. Other Other practices go more based on just basil. And that then would say mild ketones, you would look at just what your Basal rate is, or what your Basal doses and you would take 5% of that and add it on to your corrective dose if you also need corrective insulin at that time. Okay. And again, how often I that's a question when we're, when I'm talking with the people I work with, you know about, well, how much and how often can I give it really it's about every two to four ish hours is the kind of watch point right, where you're checking ketones again, about two hours later, again, hydration, the extra insulin, you should be starting to see some difference. And this is where the benefit of using a blood ketone meter really does come in, because it gives you decimal values to ketones. So you're starting ketone levels, maybe it's moderate. And maybe it's come down by, you know, point four over the time period that you've been testing and adjusting. And every that's a difference. Absolutely. You're making a dent in your ketones. They look like they're falling. So continue to do hydration, watch your blood sugar's watch the ketone levels, with kind of a testing plan of about every two to four hours, you
Scott Benner 33:25
can't stop paying attention to it, because it comes on quickly. Are there physical signs to look for? When you should? Like, is there anything physical that would make you think we're not winning this battle? Maybe the hospital is the right way to go?
Jennifer Smith, CDE 33:39
Well, if blood sugars are high enough, in ketones are present, obviously, somebody's going to be more thirsty. Definitely there. Also, ketones often make people nauseous. Like that feeling that you said Arden had ketones feel horrible. Okay. So those symptoms now again, in kids that are old enough to tell you how they're feeling or teens or even you're the adult, you know, managing everything. There's a little bit more ability to tell how you're feeling. But little kids are, I think they're harder. And so they're the ones that a lot more watchful, honestly, I would say under the age of six, more testing more watching. Because they may be the ones that end up needing to go in,
Scott Benner 34:27
right. So and you're in, you're clearing these ketones with water, if you're lucky enough to be able to drink it. And with insulin, those are the two ways you can clear it out of yours.
Jennifer Smith, CDE 34:36
Yep. And I usually even say try to try to go off and on with water and then maybe an electrolyte beverage that does have carbs in it. Because remember getting in some carb and if your blood sugar is high and you're doing carbs, obviously you're doing correction insulin, you're doing the carb insulin base, electrolyte drink, and you're doing the ketone. So you're doing kind of a three level of insulin. there because just because your blood sugar is high, your body still needs some energy
Scott Benner 35:04
in an illness situations where people are still eating, but they seem insulin resistant. That's, that can be fairly common during an illness. Yeah, so our didn't had it this week with this, with this sinus infection every night after dinner until like two o'clock in the morning, I gave her I mean enough insulin to put down a pony, you know, like, and it was, we were barely holding her blood sugar 200. And, you know, it just it takes a lot of time and experience to be able to say, I'm going to use a significant amount of insulin more than I then what would normally be needed here. And right, you know, I don't even know how to tell you to get into that headspace. It just it takes time, you have to do it over and over again. But there was a moment when I came in. I said, I was like, I'm gonna go get a syringe. And we're going to just shoot like five or six units. And, you know, because this 200 is creeping, it's going to go to 40 and five seconds like we're not ahead of it. insolence not touching you. Right? And I need to my thought there was, it's interesting, I'm almost not as aggressive as I sound there. I just don't want it to skyrocket because I know I'm putting all this insulin into her. And at some point, it might start working and put her in the wrong direction to correct. So I'm being super aggressive. If I told you I thought I might have used twice as much insulin. But I had her I had her basil doubled. Or basil was like at two units an hour. And we were bolusing. It felt like every 90 minutes, just to hold it where it was like every time it tried to go up. I was like no, no, no, no, like more, you know, and we were up watching what do we watch? on Hulu? Does Oh, only murders in the building. And we sat. We sat up all Arden was sick watching that for a couple of nights. And we just kept pushing. But the problem was is that she she hadn't lost her appetite. And on top of everything else was going for comfort food while she was sick. Right? So it wasn't just it was the illness. We were trying to hydrate her. But God knows how well that was going. She was drinking a lot. But then she's eating food that's more comfort food. And I mean it was a journey like it.
Jennifer Smith, CDE 37:25
I think you bring actually, an important point here in a sense is that when you're talking about illness, most illnesses that are the chest cold, the sinus infection and ear infection, even like a bad like tooth infection or whatnot, those will drive your insulin needs up because of the stress of the illness. And if you're not staying on top of that need to add more and by how much more mild mild cold when you're still up and around just feel sniffy, you might need 10% More Basal insulin, whether it's injected insulin or in your pump, you may need to use Temp Basal increases or whatever, you know system you're using to accommodate more. Yeah, you've got a nasty bug that is driving your blood sugar's up, and you're not adjusting your Basal up 2030 and 50%. I remember my insulin needs I wasn't even on a pump in college, I had mono. And I, I could barely like drink like broth. And my blood sugars are high. And my endo was like you need to just increase the Basal amount. I was amazed at how much my insulin needs went up, just because I was so sick. So I think if you don't stay on top of that with an illness early on, you're more likely to get ketones. Because you because you haven't brought the blood sugars down based on the illness. Yes.
Scott Benner 38:50
Right. So you could almost have because of the situation as such high blood sugars, you might have ketones that are just from high blood sugars that aren't specifically from illness. Charities. Yeah, and you know, there's always I'll let you go in a minute, but that's okay. Inevitably, I see someone online who's sick. And they have a CGM, and everyone who has a CGM has ever seen this knows how frightening it looks like. There's a ceiling to the CGM, like it only goes to like 400 or something. It's flat and that it just runs this dotted line across the top flat. And somebody posted recently, I've been sick for days. And my blood sugar has been like this for days. And I'm like, oh, no, no, no, no, no, no. And you know, and people are saying, like, do this do that I just popped into their head, I was like, use more insulin, use more Basal insulin, inject it to like bring it down. Like even if you can get it to 200. Like better I would be much better because also high blood sugars impede wellness in general and healing.
Jennifer Smith, CDE 39:52
Absolutely. The longer you leave high blood sugars while you're sick, the more likely you're going to be sick longer, right? Yeah, really.
Scott Benner 40:00
All right, well, I appreciate you doing this with me, because it just seems like something that people struggle with constantly. And it doesn't matter if you're newly diagnosed, or if you've had diabetes for a while, but I thought that it would fit into the beginning series. So
Jennifer Smith, CDE 40:13
it does I think the only thing that I, I think, because we have those levels of mild, moderate, and large for ketones, I think the last question a lot of people end up having is, when do when do I go into the emergency department? Yeah, right. When should I go, I've done all this stuff, things aren't moving, things are getting worse. You know, if your ketone levels, I think, one. You're trying to drive blood sugar down, it's not working. Let's say you've even while you're sick, you've done a site change because you think, Well, besides being sick, maybe it's my pump, right? Your blood sugar's aren't really moving. Your ketones aren't moving or are going up, that's more of a time, you may be behind the curve in terms of hydration and other the electrolyte balance and all of that in your body, you may need to go to the emergency department, you may need their assistance. So I think, just to clear up like, when should you really go?
Scott Benner 41:14
Well, Jenny, to be completely candid, this is a hard episode to do. Because there's a lot of nuance, and everyone listening is not going to be in the same situation, right? And really, honestly, I mean, there'll be a disclaimer at the beginning that says like, this is not medical advice, because I don't know your situation. And you might need to go to the hospital and like bringing up those Facebook posts where people run into like, go to the hospital. Those are people were like, I don't know what's happening there. And it sounds like you don't know, either. So go find somebody who understands
Jennifer Smith, CDE 41:47
this. Go somewhere who else who has a medical degree and can at least maybe hook you up to an IV?
Scott Benner 41:53
Right? Yeah, I mean, I think the way I think about it is the way I described it when Arden had the bent cannula, right, which by the way, I just want to say, only Ben cannula the entire time, she said diabetes, just one, which I think is Wow, not bad, right? Oh, but in my mind, when I saw that, I thought, if I can start bringing this down right away, if she can hold water, and I'm moving quickly, at a reduction, okay. But I am not going to mess around with this like so, you know, I you have to use your own personal intuition. And you know, it's don't genuine aren't telling you what to do. But, you know, I just thought maybe this would help guide people through it a little bit. It is a really weird thing. Like, I seriously in this space, sometimes you'll think Why does no one ever talk about this? Or that? And the answer is, because I don't know. Like, I don't want to tell you absolutely something and it not be right. And I'll give you an example. What's an episode that we have on our list that we never get to? How low of a blood sugar causes damage to a person? Everyone wants an episode about that? They bug me constantly, I get notes about it. I say to Jenny, how do we do this? And we're both like, I don't know, like, like, right? Yeah, you could difficult.
Jennifer Smith, CDE 43:11
That's a difficult one, because it's kind of like it's like ketones. It's you've been given these tools, you've been given this guideline to utilize. And every person I mean, what is it? It's your diabetes may vary, right?
Scott Benner 43:29
Yeah, me, right. Yeah. And by the way, some people are dizzy at 70. And some people are dizzy at 50. And some people never get dizzy and etc. And right. But the question people have over and over again is when does damage happen? Like, where can I let and listen, I can tell you that last night hardens, blood sugar dipped down to 55 for a couple minutes. It went up to 61. I looked at it. I said if this keeps rising, I'm okay. But it went back down again. So I gave her some juice. I didn't want her to sit there. Do I think that she's three IQ points dumber today because of that? No, no. But you know, but I also am not comfortable saying that out loud. Like as a certainty, you know, correct. And
Jennifer Smith, CDE 44:08
Reese, I mean, references or research often focus a lot heavier on what are what are the problems that come from high blood sugars. There's minimal. There is information but there's minimal information about what value creates problems with long term like mental health, right? And most of the research identifies under 55. So if you're looking for value, I would even say, let's say under 60, just to be safe, right? But honestly, it's it's the duration of the low blood sugar. And that's a general that's a general statement, right? If you're having duration one day into the next into the next into the next, it's very likely that you're impacting your brain cells,
Scott Benner 44:57
but if you're 60 for a half an hour It's a different situation.
Jennifer Smith, CDE 45:01
It's a different situation. I think that's the, that's the best, simplest way to say too much is too much and will likely create issues. So let's aim for less lows and defining lows as under 60. Let's aim for less of those.
Scott Benner 45:20
One one day, maybe we'll try to tackle it and see how it goes. But I just wanted to make the point that this is not this ketones thing. It's there's no real certainty in it. Like I don't know when to tell you to go to the hospital. So good luck. And try not to get sick. I'll tell you right now, Jenny. I don't miss COVID. But I miss everybody staying away from me and nobody gets sick. I love that time. But he's been so secure for so long, I would go back to being locked down. I have to feel like this.
Jennifer Smith, CDE 45:50
Hopefully, you guys are all on the mend.
Scott Benner 45:53
I hope so too. All right, I really appreciate it. Thank you. So welcome, of course. First, I want to thank my sponsors in pen from Medtronic diabetes and remind you to go to in pen today.com Also want to thank us med us med.com forward slash juice box or call 888-721-1514. And of course touched by type one is touched by type one.org. They also have a bustling Facebook and Instagram presence. Go find them. If you're looking for more bold beginnings, episodes, head to juicebox podcast.com. Go up to the top to the menu and it says it right there bold beginnings. Actually, a lot of the series are up there. Ask Scott and Jenny after dark algorithm pumping defining diabetes, diabetes, pro tip the variable series, mental wellness to finding thyroid. It's all there where you can just search your podcast app if you just said juicebox one word. And then like bold beginnings, I think you would get a list of all the episodes right your podcast player. I hope you enjoyed this episode. Thank you so much for listening. Let me remind you that Jenny works at integrated diabetes.com Who wants to hire her head over there. And I appreciate you listening and sharing the show. As the year comes to an end, I find myself very reminiscent of the past year I think back that's not the word reminiscent. What am I don't remember the word. I'm feeling good. So another long year of making the podcast for me. And I'm just thrilled with how it went. I'm thrilled with how you guys enjoy the show your feedback and how you share it. It grew exponentially this year. Doubling downloads over last year, maybe more than doubling downloads over Yes, sir. Anything. Yes, more than doubling the downloads from last year. It's just taking off because you guys are great listeners who not only download and subscribe and follow but you tell other people about the show. And that's why it's growing. And that's why we get content like this and I just can't thank you enough. I'll be back very soon with another episode of The Juicebox Podcast.
Test your knowledge of episode 805
1. How should blood sugar levels be managed during exercise?
2. What is the role of insulin therapy in managing diabetes?
3. Why is carbohydrate counting important in diabetes management?
4. What should be done if blood sugar levels are low during exercise?
5. How does physical activity affect insulin sensitivity?
6. Why is it important to adjust insulin doses based on the type and duration of exercise?
7. What types of exercise are beneficial for people with diabetes?
8. How often should a person with diabetes exercise to see benefits?
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#788 Bold Beginnings: Family
Bold Beginnings will answer the questions that most people have after a type 1 diabetes diagnosis.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends, and welcome to episode 788 of the Juicebox Podcast.
Well, I know I said in one episode that we were done with the bold beginnings, but turns out I didn't see a page of the document. So we're back. Jenny and I are back today with a bold beginnings episode. Just for you. Today's topic is family. Jenny and I are going to have some kind of big conversations in the first 20 or so minutes. And then we get into the questions and statements from listeners just like you about what they wish they knew when they were first diagnosed with type one diabetes. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please take a moment to fill out the survey AT T one D exchange.org. Forward slash juice box it will take you fewer than 10 minutes. You can do it right from your phone. You know like it doesn't I mean, it would take two SEC you could probably do it through seven traffic lights at a stop sign or one. You know, reasonable bowel movement something like that T one D exchange.org forward slash juice box take the survey. This show is sponsored today by the glucagon that my daughter carries. G voc hypo penne Find out more at G voc glucagon.com. Forward slash Juicebox Podcast is also sponsored by Omni pod makers of the Omni pod five and the Omni pod dash to get started today with Omni pod go to Omni pod.com forward slash juice box. It will take you but a few minutes to get everything going. And the next thing you know tubeless insulin pumping Omni pod.com forward slash juice box. Yes. I've never I mean I've only twice. Twice. Yeah, probably twice since I've had the podcast. Have I recorded an episode and then when it was over not had the episode. Like had like, oh,
Jennifer Smith, CDE 2:26
meaning you didn't post it? Or because it never recorded? Oh,
Scott Benner 2:30
yeah. Oh, no. One. So yeah. Once with with was with Donnie,
Jennifer Smith, CDE 2:36
oh, gosh, Danny, Hi, Danny told
Scott Benner 2:39
he told such a personal story. And then I had to contact him and be like, Look, we got to do this or do it again. Or you know, I would understand if you didn't want to and I felt bad. The other time was with Victor Garber. Wow. Yeah. That was something I had my voice and not his recorded. Oh, gosh, yeah. So I had to call him back and say, I'm so sorry. But you know, I messed this up. And at that time, it had never happened before. And he was so nice. He said, Well, I vote day off next week, we can just do it again. And while I'm filming a TV show, he was like, I could just do it again. Very
Jennifer Smith, CDE 3:18
well. I was gonna say gosh, with his schedule, although I don't know how active he is anymore. As an actor. I don't even know what he has done lately.
Scott Benner 3:28
I know what I seen him and I've seen him in recently. Orville on Hulu. Okay, it's like a look, we don't
Jennifer Smith, CDE 3:35
do a lot of, you know, oh, no, I mean, even new commercials, like, you know, friends will comment about this silly commercial for something or another. And I'll be like, I don't know. We don't really watch TV. We watch the amazing race. And if Lego masters we watch Lego masters. That's kind of the real TV that we watch. Because there's nothing real on anymore. That's like, like Seinfeld. Like that was a you have to dig around. Watch it.
Scott Benner 4:08
Yeah, you have to dig around. We I watched on Hulu recently, reboot. Sounds like a Hulu ad. It's not. And I enjoyed that. And Arden told me to watch the bear on Hulu. And I'm okay, two episodes into that. And that's been good so far. So anyway, my point is I'm recording.
Jennifer Smith, CDE 4:28
You can tell that we are being recorded.
Scott Benner 4:31
The only weird thing that's ever happened to you and I is that we once recorded the same episode twice. And I didn't realize it so I put them up together so people could hear the difference. The difference? Yeah, which one? Was that? Do you remember? I have to dig it up. It's like a defining episode. Okay. And but and it's, I don't know, 1520 minutes of defining a topic. And then we just did it again weeks later because I didn't check it off the list. And when I realized that I put them together and I said here, here's both of them so you can see where
Jennifer Smith, CDE 4:59
interesting Wonder what we added to one versus the other? Or what was the same? I'd have, that'd be interesting to figure
Scott Benner 5:05
it out. Oh, anyway, despite the fact that I told you we were done with the bowl beginning series, that was a lie. Because there's always more to add more topics here. So today, I'm gonna go over the feedback that we got from listeners of the podcast. And they said that family was an important part of a new diagnosis. Yes, so I agree. Yeah, I we don't live near our family. My mother doesn't drive. And you know, Arden was diagnosed a long time ago, when she was everyone was younger, my mom didn't drive so she could never get to us. And our extended family, like no one lived near us. But when Arden was diagnosed, my mother in law did say just tell me what I could do to help when you come home. And the only thing I could think of in the moment was like the house, like, go clean the house, go wash every piece of clothing, like try to get me I don't know, a Head Start or something like that, as I write back, I don't, I don't remember having an impact or not.
Jennifer Smith, CDE 6:15
It wasn't so much about helping in terms of actual diabetes, it was more the behind the scenes stuff that you know, was going to sort of fall to the sidelines, because you had something so new to focus on that there was a lot of learning involved, too. It's kind of something I actually tell to all of the women that I work with through pregnancy, is you may not want help with the baby. But you probably want your mom to maybe or dad or somebody else to come in and help you do some cooking, or plan or grocery shop or clean the toilets for you. It's like,
Scott Benner 6:55
well, well, I as I look back on that that story, I realized, I wouldn't have known what to ask for. I didn't know anything about diabetes, I couldn't have asked. I mean, if you brought me the two guys that invented insulin, and said here, ask him whatever you want to do. Like, I don't know what to ask them. I have no idea here, you know, right. So it is an interesting Well, that's a great idea, though. Just have somebody cover whatever you can. Yes, yeah. And to try to get you moving. Let's see what people said, though.
Jennifer Smith, CDE 7:25
I can I add something to that, too. I think what may go into that, especially if you have other kids in your home who don't have diabetes, if diabetes is entirely new to you, right? I think if you have somebody who can come in to help with some of those other things, making sure that the life of your other kids also doesn't get like scheduled differently. Yeah, right. Like, hey, you know, you're gonna be here for the next two weeks. That's awesome. These are the things that could be helpful. But I just want to make sure that Johnny is always still going to school at the same time that his lunch is always still getting packed that he's, you know, it's got game night on Friday night, right? While you're getting used to things that other person could be just contributing to keeping normal normal stuff there.
Scott Benner 8:20
We Arden was diagnosed on a family vacation. And it was the extended family vacation. So there were three or four families in this house at the beach. And I remember that feeling of like, we have to take our son to the hospital. But what do we do with Cole? Are we just abandoning him here, you know, and everybody was great about picking him up and keeping him moving? Right. I have to say to that, as much as I tend to believe that Ardens diabetes hasn't impacted coal that greatly. I don't think that's true. I just think it's probably in ways that he doesn't share that we don't know.
Jennifer Smith, CDE 8:59
Or he may not even realize know how, right he may not acknowledge or even consciously realize, because this is what was he four ish or five when he was diagnosed? When she was diagnosed?
Scott Benner 9:13
She was six and okay. And she was too. So they're four years
Jennifer Smith, CDE 9:17
apart, too. Okay. Yeah. But he was at that stage where he was young enough that his whole life has really been with a sister who has diabetes and this is just the way our family functions. Well, right.
Scott Benner 9:32
I even think now, you know, you know that my whole family Arden's at school, but my whole family got COVID We got it together. We did it as a family. And, and I, a couple days into it, Kelly asked me if I was okay. And I think I must have been acting strangely. And I said, I get very upset when Cole was sick. And I never really looked into it any deeper than that. But here's the rest of it because I think, gotta hope he doesn't get Diabetes. Like, you know what I mean? Like, a virus is here. And yeah, I'm always off kilter When coal is sick. And my point is he, he mean, he must think that too, right? Like, he must get sick of me. You know what I mean? Like, it's just gonna happen to me. Anyway,
Jennifer Smith, CDE 10:20
I wouldn't disagree with that. I mean, I have to say as, as often as it might seem to some people, when my kids are sick with a fever and some kind of virus, I do finger sticks. I mean, I just do, it's just my typical habit now. Because in the back of my head, that's always that's always the potential that's there as well. Yeah. And obviously, catching it sooner than later. And all those things that we know, is a good thing. But yeah, absolutely. When you've got autoimmune stuff in your family that you know about, it's probably something that just, that's where your brain goes, whether you want it to or not,
Scott Benner 11:03
even though most of the extended autoimmune stuff is on Kelly's side of the family, like there's celiac and things like that. I wonder sometimes, if I'm gonna get diabetes, like I interview so many people that get it in their 50s and their 60s, and you know, like, there are I think, is this gonna happen to me? Is this like, is this like, the, this is the end of the story about the guy that started the podcast about you don't I mean, somehow, a guy who doesn't have diabetes started a podcast about diabetes, it became really popular, and at the end, he gets it like, is he gonna be like, like I said, commenting for me, you know, anyway, I just think that that has to be the case. I mean, siblings who understand how it works, and are educated must worry about it. Having said that, the amount of people that I've interviewed who, whose children get type one, and tell me that their sister and their brother had it growing up, and I'm like, You were never worried about that right now. I didn't realize that could happen. So, you know, I don't know what people know. Right? Okay. So here's a little bit of feedback, balancing family life with other kids and making sure they aren't feeling left out or overwhelmed. And I think that's what we've been talking about here. But more contextually, you know what happens, right? You're, you're freaked out about high blood sugars, low blood sugars that somebody's going to pass out, you know, and you start hyper focusing on it. I realized, gosh, Arden must have been in middle school, when I recognize that when she would come in the door. I never once asked her how her day was or how she was. Yeah, I asked what her blood sugar was, because we didn't have monitoring back then. Right, you know, so as soon as CGM came up, I would orient myself with how her blood sugar's where she came home, and then consciously did not ask her about diabetes. But you do wonder how many times do you ask, how many times does another kid hear you asking? And how many times they realize that you haven't asked them about anything.
Jennifer Smith, CDE 13:10
And I think you bring in an important piece here is the technology that we have today. It's wonderful that we have the information that we have. And in a way for you, it kind of did almost what I would think is kind of like the opposite. Right? Now you've got the information C or S asking kind of less. But like when I was growing up, the information asked was only around a finger stick time. Yeah. And unless I complained that I was feeling weird or off or low or whatever. I mean, you never hear it's never right. I mean, that wasn't something who my dad was usually the first one home from from work, we got home, we were latchkey kids, if anybody even knows that term any longer. I don't even know if it's used. But I mean, my dad never asked like, oh, how are your blood sugar's today? It only got one finger stick a day at lunchtime, and that was like four hours ago.
Scott Benner 14:11
Yeah, no wonder. We were I mean, back then we were kind of caught in flux between some information, but not enough information. And I knew enough to be worried. I didn't know how to stop anything from going wrong. You know, right. i If you if this podcast existed 15 years ago, all you would have heard is a guy going I don't know what I'm doing. Excuse me, now I have to go cry in the bathroom. It was terrible. But okay, so how to create an empowered, less burdened cooperative relationship with your kid around diabetes, to not have super issues in the future? God, God, what do you think is I think about this all the time.
Jennifer Smith, CDE 14:57
So I think it differs According to the age of the child, I do you know the term like texting diabetes is very common with the middle school to high school, maybe some elementary school but more the like, older than about fifth grade kind of age. And I think in terms of strategy like that, that's great. As long as you're not becoming the helicoptering like, Do this, do this. I see this Why are you not react? You know what I mean? Make the interactions purposeful, the same thing I recommend if you're going to do a finger stick, make it a purposeful time to do the finger stick. Don't just like check 50 times a day because you think your CGM isn't accurate, right? But then for, for kids who are more the teen age where you want them to start learning more and more, to take on a little bit or understand a little bit more in terms of adjustment, I usually recommend families decide on a day, or like just a 30 minute time frame, just to sit down and that's your diabetes time. And in between that the management should be should be brought down a level that it's not the only thing that you're ever really discussing with them. Right.
Scott Benner 16:23
So I'm learning well artists to college every day. And you know, I've been passing Arden's care off to her slowly for years. And if you would have asked me two years ago, Scott, are you that involved Norton's diabetes? I would say no, not really. She takes care of it. But I overseas like I, meaning I pay attention to it. I come to her when I think there's an issue. What I didn't realize was different between her living here and her not living here is that if I texted her when she was in the house, and I was like, Hey, I think you should Bolus for this. And she disagreed. I could walk into her room, knock on the door and say, Come on, we really have to Bolus here, right. And so I was not controlled. Like I wasn't pulling the strings. But I could always jump in and grab the strings if I wanted to. Sure. Now that she's not here. There are no strings are there? No, no, there's no, there's no strings. And so not only do I not know what she's doing, right, I can only see through Nightscout I can only see, hey, she Bolus for 55 carbs here. So okay, she must be eating. i That's it. I don't know what she's eating. I don't know if she Pre-Bolus. Or if she put push the button and sat down late. I can't tell any of that. So one day, I sent her a text and I said, Hey, I don't I don't remember what I said do something. And she didn't do it. And time passed and time passed. And I texted her again. She completely ignored me. And then her blood sugar started to go down. And I texted her back. And I said in case you didn't get this. Don't do the thing I said now. And then she responded back. She said, I've seen all your texts. I disagreed with what you wanted to do. So I just didn't do it.
Jennifer Smith, CDE 18:12
See, she knew more because you probably didn't know the variables that she knew because she was right there in her own moment. Yes,
Scott Benner 18:19
yes. And so that I was proud of I was pissed. Asbestos, she didn't answer me on purpose. And I was proud. But I was proud of her that she she knew what was going on. And you know, we've been kind of going back and forth and doing that. And I found myself just only really contact here in what I would call either an emergent situation, or with something that she's clearly struggling with. Like I'll say, hey, look, this, whatever you're doing, I see you're trying it's not working. Here are three options that will make your blood sugar move. And then I don't I don't even tell her which one to pick. I'm just like, Here, try this trick. This trick or this trick, right last night. Last night, she she she was like, she got really aggressive about a meal. It was terrific. Actually she's like a 65 blood sugar like an hour and a half after she ate it was super stable. But I could see the loop taking insulin away and it wasn't making a difference. So I said to her look, just take one gummy bear. Just one, it'll turn you into like an ad. I was like, I don't want you to get into a position where you have to take too much. Because you haven't had Basal on so long your blood sugar is gonna fly up, then the algorithms gonna see the big number hit you again and you're gonna, you're gonna get low again, right? And she said, I don't need that. I know what I'm doing. I was like, okay, and then we ended up talking like, half an hour later about something that was about school related. And I said sure about the gummy bear thing. And she was I just took it you were right about that. And that was it. I was like cool. Yeah, good. So it's But all that aside The problem is, you've spent years thinking about stability, and thinking about stopping spikes and stopping lows. And I mean, in my mind, I guess everybody's mind you think it's, it's not going to change, they're just gonna get older. And you'll just keep doing this. And they'll learn more as you go. But it's not what happened. I mean, I don't know if it's what happens for some people, it is not what happened for me. Like she laughed, and she's like, I know how to do this fairly well. Right? I don't need his help. And he doesn't even know what I'm doing. I've gotten so many texts from her that just say, you don't know what's happening on this end.
Jennifer Smith, CDE 20:45
Right? Like, I'm okay. I'm taking care of it. If not, please tell me to do something else in an hour. Right. And I think while you probably feel like, you haven't really planned this point of transition, at least not the way that it's happening, right, you thought that you had done some things along the years. And a lot of that was probably, I'm sure, quite helpful. But I think as I work with people, I usually also say, to parents, even for kids who are at least five and older, as you are navigating an adjustment right now within like the diabetes strategy, if your child is their voice, your plan, even if you're not really just talking to them, in fact, if you're not talking, but they're close enough to hear you, you're verbalizing out loud what you're doing and how you're doing it, especially not in a very emotional way. Just a blood sugar is high. This is what we're gonna do. We're gonna watch it for this time. Eventually, they absorb that.
Scott Benner 21:50
Yes, no, I agree. I've done that. And I agree. And it's actually what I did in that story. I just told you by sending her three options, I was just sending her my thought process, right? Well, I guess we could do this. Or we could try this. Or we could try that. And I thought, well, she knows the variables. One of these options will make more sense to her than the other. The part about not being emotional that I was really cognitive cognizant of right away. Like, there have been plenty of times since she's left that I've wanted to text her and be like, Oh, my God, will you please Bolus? What I realized is that she's trying. And she's, it's not like, Oh, Dad, I'm trying it. She really is trying. And I thought how long it took me to learn how to do this. Like, why would I expect her to do it? So quickly, you know, just because I basically know what to do right now, doesn't mean she does, but she's gonna have to now, me we talked about in the Pro Tip series, so much like she is now has to have experiences over and over again, that teach her what to do. It's my job, not to apply my reality and my understanding of diabetes on top of her while she's trying to learn it. And that took a while to I mean, it took a while for me to be comfortable with I didn't do it like I didn't pressure but I didn't feel comfortable about it in the beginning.
Jennifer Smith, CDE 23:12
And I think as much as a caregiver, you know, yourself, or any of the other parents or, you know, people who are helping to navigate management for a kid or a teen or even a college student, I think there are things that you learn the way you do without having sort of a sense of it, the sense of, which is what it sounds like art is doing. And it's some thing that I also can't explain from my personal why I would do something versus just looking at data, I'm sure somebody else would tell me to do something completely different. It's a, it's a sixth sense, almost of navigating. You will learn it by how you how you feel in the moment, right? I feel this way. It looks like it's going this way. Like your brain spins quickly forward of I have this coming. I did this. I have to apply this strategy right now. And those are things that somebody could have been doing for you. But they were doing it without the internal sense of feeling and feelings. Not really the right word. But you do you develop this like, additional sense.
Scott Benner 24:24
You have a shorthand with your own diabetes. Yeah, yeah. Well, I've been there was a time where she was she treated a low in a class. And it she did it, she grabbed it, but it was not coming up. It was still like in the 70s. And I sent her a text and I said do not walk home from class with your blood sugar like this. And she didn't answer me and I said I texted again and I said, you have to answer me. And she said, Okay. And that was it. Like just little like I've only jumped in where I'm like, I do not need something bad how Talking to her while she's walking through downtown. Where am I supposed to say that she goes to school? Chicago? And and Fargo, how about Fargo? She we were when we recorded together. I said where she was going to college because that don't tell these people where I'm going to college. I'm going to Chicago. Look for me there. So anyway, I've been I've been clear about that. But it's, it's your problem as a parent. Now, in this scenario, I have a kid who's actually trying, I don't know what I would do. Well, I guess I do know what I would do if she just wasn't paying attention to it. Because there were some times the first couple of weeks while she's trying to adapt to school, that she when she, when it was time for her to give something away out of her brain, she gave away diabetes. And she'd let her blood sugar sit like 180 200 for a few hours. And I was like, okay, like, she's got to go through all this, this is not going to kill her for a butcher to be 180 for a few hours. And then I would kind of at the end of the night. If we spoke like she'll show me something she was working on. I would just kind of say, Look, I know you're busy. And I know you're trying. But we can't stare at blood sugars like this for three hours, right? You know, so next time trying to do something about it. If you don't know what to do ask me. And that's it. But that I mean to this person's point about creating an empowered person. It's such a tight rope, right? Because if you push them too hard, they might not take care of themselves. If you don't push them hard enough, then the disease will get them. How the hell are you supposed to decide between bad and bad?
Jennifer Smith, CDE 26:48
And within that you're also navigating, managing just a child. Right? And all the things that you may need to counter just because they're a kid, right? And I know a lot of parents say, Well, I, you know, I feel bad scolding them for goodness, if they like kick the cat, and it was totally unnecessary. That has nothing to do with diabetes, you need to punish that. Clearly don't feel bad just because they have diabetes. I mean, it's a but it is, as you said, it's like a tight line to walk to no kid treatment versus manage the diabetes piece.
Scott Benner 27:33
Right? No, it's, you know, it's that feeling of I mean, I've raised two kids into, I mean, I guess they're adults now. And then there's moments when you're like, What do I have to do here to make sure that we're all together and happy and love each other for as long as we can? Versus versus I don't want them to? Like, what do I also do to make sure that they don't try heroin when they're ninth grade? You don't even like? Yeah, in your mind, I don't listen, this might just be me. But in my mind, there's straight ahead, which I don't think we're going to get to. And there's way off to the left and way off to the right. And, and I'm just trying to keep everybody moving forward as best as I can. Yes. I mean, I don't know what everyone else's goals are. But around diabetes. I don't want my kid dying before me. I can't handle that. That's my goal. Right? And around regular parenting. I don't want my kids to be at goals. That's a simple, I really don't, I don't want Yes. And I want them to be able to take care of themselves, and to have fulfilling lives. And you know, every time you say something, it's hard to imagine, but everything you do everything you say every time you walk through a room, it's cumulative. And with diabetes, it's all sped up. Because you could very easily push somebody away or maybe they want to be pushed away. Who knows. I don't know this is depressing. How to handle big events like birthdays, weddings, having a baby going to a sleepover so this is how do you get your family to help you with these things?
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Jennifer Smith, CDE 31:45
It's not? And I think it's not because there still is. There are so many tunnels to go to here. I think one it's not because many family members still don't truly understand. Type one management. And they have a very naive understanding of diabetes management in general. Yeah, they do. So, you know, I I'm quite sure if I got together with my family more often, somebody would still knowing that I was coming plan some kind of sugar free dessert. Yeah. Thinking that they were being so kind and whatever or you know. And while that can be nice that you were thought of, in a way, it also doesn't make much sense knowing what you know. Right? Right. So I think in terms of family education, who are your four, you're really close people in a family that you would be doing the most with, for big celebrations, holiday events, birthdays, and those types of things. And, you know, just if they're willing to listen to, this is how we navigate again, a simplified kind of form. But don't worry about bringing sugar free cookies, or don't worry about doing this, this or this, if I want you to bring something different or special, or we're following a specific type of you know, eating plan, then great, you could do this. But otherwise, just bring whatever you're going to bring. And don't worry about it. Because we've got it.
Scott Benner 33:35
It's tough too. Because if you tell somebody treat me normally, and you're talking about like, I don't know, your sexual, like, don't treat them differently, treat them normally. That's great. Except then later, if I dropped them off at your house, they're running around in circles in the backyard forever, I would like you to pay attention to their blood sugar, right? So
Jennifer Smith, CDE 33:52
I think there are different, that's a very good like side point to make. Because if you if you were going to rely on family, for some type of babysitting, or watching or whatnot, you'd have a different set of guidelines or information that you would want to go over with them. Yeah. These are the things to pay attention to, obviously, you know, versus like a birthday where there 40 People there, you're there as well. So, you know, I think they're different
Scott Benner 34:25
when when we would leave art in with somebody, we just basically set up. I don't no checkpoints, test your blood sugar here, tested here. You know, if you're going to do a meal, we're going to test first if you're unsure about how much insulin you could go ahead and call us. Like that kind of stuff. I mean, I have to admit diabetes did dig into my my adult life as you know, as we were growing up, we didn't go out as much as we I think we would have afforded didn't have one, stuff like that. We also ran into the point where the problem where there was a A person in our family that for years, I would imagine would right now bring Arden, if Arden was low, they'd bring them her bag, like for insulin, and if she was high, they'd bring them sugar, they always had it backwards. And never, never really never sunk in. So Right. I
Jennifer Smith, CDE 35:21
mean, that's, you know, again, if you're going to choose, don't expect to educate your whole family, you know, all your secondary cousins and who whatnot, about how to navigate, especially if you would never leave your child with them for an overnight, right? Pick the people that you definitely have as your go to, because they have watched your children or your child already. And you would like them to continue to be able to do it from a comfort level on in two places, right? Your comfort in knowing they can do it, and their comfort and feeling like everything's gonna be okay, if I kind of a decision matrix of do this for this, do this for this, cover it this way. But again, don't feel like you have to educate all 200 people in your family. One of the people who are really going to be the go to people,
Scott Benner 36:14
I think you could save yourself a lot of heartache that way too. Because the mean, the truth is, is that everybody can't understand everything about diabetes or everything, but you're just gonna be I mean, you see it online, a lot people get upset. A comedian made a joke. It's not funny, he doesn't understand my life. Like I get that, like, you know, you know, somebody asks me if I can eat this thing over and over again, like, I mean, just kind of get, listen, everybody can do whatever they want. In my mind, I just gave it away. I was like, I don't expect these people to understand. They have, by the way, those people have problems that I don't understand. Correct, you know, and they're not mad at me for not understanding their you know, I don't know their rubella.
Jennifer Smith, CDE 36:59
I would hope not. There are good vaccination out there. That's part of the MMR vaccination. Maybe they've been I don't know, in the I don't know, some country. I don't know,
Scott Benner 37:14
I reached back too far from my joke. I thought to myself, like, did I just go back to the Old West? What happened there? But you know, I just I don't expect them to understand everything about me. They don't expect me to understand everything about them the diabetes, like, omnipresent your life that it gets irritating, and I get it, but at the same time. There's something more because I have another thing, no, go ahead. This person said, Have everyone in your household participate from early on, gave peace of mind that they will be able to take care of the child? If you're ever this is like this is household This is brothers, sisters, husband, anybody lives life house? Yeah, yeah.
Jennifer Smith, CDE 37:55
Yeah, it's, it's, I think it's a very good point to make. Especially considering that I know, a lot of families have one of the parents who really heads up the management, I would say that it's less of the families at least that I've had the opportunity to work with less of the families who have both parents really on with each other, and how they navigate. And some parents have a really good strategy of as long as the glucose numbers stay within this range, we share some strategies that we know will 99% of the time, they will always work regardless of whether they're with, you know, this person or this, this adult or this adult. And some parents have some strategies that they find work when the child is with them. And the other parent has other things that they have figured out. And it works with them. And I think that's okay, that's okay, that there isn't always 100% of this. If this then this. Because when one parent or caregiver is with the child, there may be variables that the one who's looking at the data like you and Arden Yeah, that they don't know is happening. So one is navigating this way. And the other ones like why are you doing that? You gotta have some give and take there while also having some definitive management strategies that you're both enacting.
Scott Benner 39:28
We started off with trying to do it together, like literally and then one day we were like, This doesn't work for us. Like we're, my wife and I both have like, strong personalities. And we'd get into situations where we were like, it's milk and I'd be like, it's juice. And then we were just like, while Arden was plummeting, we'd be we'd be arguing about what was gonna save her life. You know what I mean? And, you know, a sidebar Jenny I, I, I impart as Kelly out because of how Brighton and I'm sure she was of herself. And I'll tell you 25 years later, I don't know if that's a thing I would look for anymore. One time in my life, I'd like someone to look up to me and go, Oh, is that what you think? Okay? It hasn't happened yet. I'm keep waiting. But but the spirit of back and forth just didn't belong in that scenario. So we just said, Look, you're at home, I'm at home with her during the day anyway, just keep it with you. Doesn't mean Kelly doesn't know how to do it. But to your point, when she is doing it when Kellyanne Arden are by themselves, especially when she was younger, I had to learn to stay out of it for the exact reason you said because I don't know what the hell they're doing. And they're clearly not doing what I would do. And then you just you fall right back into the argument again? Yeah,
Jennifer Smith, CDE 40:45
exactly. But I think it also, I mean, for those who are listening, who may have divided families, you know, there might be divorce or something in the picture, I think the really important thing is, as much as you don't want to be together in life, you have to find a management strategy that you're both going to stick with, from one house to the other. Because it makes it really difficult as you're navigating all the teaching that you did with Arden. Kelly was doing some of that as well, when they were together in a different way. But it wasn't, it wasn't a negative to her overall management. Well, fortunately, right? Unfortunately, some parents really have the whole, like, we're aiming for this, like Target Range, and we're doing it this way. And there are all these strategies in the picture and the other parent may just be sort of flippant about
Scott Benner 41:41
it. And I've seen a lot of we have a number of episodes about divorced families because of that, because of just what you said that I've seen people send their kids somewhere for a weekend and the kids blood sugar's 400. all weekend long, right? And then there's no one. It's not even that they're not trying, there's no understanding of it at all. Correct, you know, so yes, that's makes it
Jennifer Smith, CDE 42:01
and that's again, even if you're not thinking about it from think about it from the child's need, right? Even if you don't agree with each other. You have this beautiful little person that's depending on you, or their health, right. So put all of your irritation. And just do it for the kid.
Scott Benner 42:24
Important it is well speaking of marriage, this person said this person said our honest to goodness, healthy marriage was bent every which way as we juggled sleep deprivation, math on MDI, guilt concern while trying to also communicate with different levels of knowledge about diabetes, she says that me with me with loved experience and him with little to no knowledge or lived experience. Experience. Yeah. And so it sounds like it sounds like the the, the wife parent, yeah, understood diabetes, the husband didn't. Some days, we still disagree. But we've come to a point where we have a unified approach. I mean, that's I read that it's basically what we just talked about. But But there it is, it's honestly got feedback from somebody who's gone through it, it is going to happen, I don't care. I mean, I don't care how good your marriage is, like this, having a chronically ill child is it's immediate, and it's frightening. And nobody just drifts through it. Like, hey, this was easy, I get you're not gonna listen to diabetes feels that easy to you might not be paying attention to it. So like, it's, it's not that easy. This person said, we let our kids do everything. And so this is interesting, because they said it's their body and so much is out of their control. We've been careful to let them be involved and put their curiosity to use and helping them feel a sense of autonomy over diabetes, of course, in age appropriate ways, and being careful not to burden them, dad, and I do everything, but we give them choices along the way. And have them learn the names of their devices and the steps that we take. It's helped ease anxiety about site changes, and they honestly feel proud and accomplished when they can show people their stuff and talk about it. It normalize that for them. It's also been a great opportunity for us as parents to teach emotional mental health awareness about the consent an age appropriate way. So that's really terrific. That's
Jennifer Smith, CDE 44:26
fabulous. Absolutely. I think, you know, another one in that when this person says we let the kids do everything. Absolutely. I mean, there are so little, there's such a little, I guess, number of things that you can do, despite having diabetes, that really anything out there as a potential possibility. And one of the big things that's always you know, the question, in terms of everything is is food, right? We just let them make their choices and You know, navigate around them. And I think because there's there's a lack of nutrition education anyway, growing up, I think that kind of ends up turning into when we let them do anything. But along the way, there are teaching moments within that to say, if we do this, this is what could be the picture, we could have much more focus and navigation that we have to do. Versus if we do something this way. It might be a little cleaner, it might be a little easier or whatever. So
Scott Benner 45:32
yeah, I as hard as growing up. The only thing I ever was, I don't want to say insistent about because she didn't. She wasn't resistant to it. But when CGM showed up, I was like, we were doing this. This is, you know, you know, and Kelly's like, what if she doesn't like it? I was like, I don't
Jennifer Smith, CDE 45:48
I don't care.
Scott Benner 45:52
Yeah, that was one of my mom, like parenting moms. I, you know, I used to say it on the podcast more frequently. But I don't get letting four year olds make medical decisions. I'm the I mean, I understand autonomy and everything like that. But you know, like, if your kid got an illness, they had to take three pills for it. And they and they said, I don't want these would you go oh, they didn't want them. So yeah. No, you would not. Yeah, that's not how this works. Like. But that doesn't negate anything that this person said, you, you should be striving for everything that they said.
Jennifer Smith, CDE 46:23
Absolutely. That's a great post. Absolutely. Your
Scott Benner 46:28
last one, my son was diagnosed just before his 50th birthday, and wanted to do everything himself. I thought this was great. And that that and that that showed signs of like super independence. But now I think this was a mistake. It may work for some kids, but not for us. And so it looks like actually there might be two more things. But sticking to that one for a second. There's a difference between Arden saying that I've got it. And she's actually trying. And her saying that I've got it and then she's ignoring it. So, you know, it's, and that's tough, because you want to believe that from your kids, I would, I would point people into the podcasts on this one. You want to really understand this, listen to conversations over and over again with 2526 29 year old people who were diagnosed in their teens. Right? So the parents were involved for a little bit. And then it seemed like they were old enough. So they said, Oh, that's okay, now you take care of it. Every person looking back with hindsight says I told my mom I had it. And I did not have it. I didn't know ya know what I was doing right? And then I went off to college, and then really didn't pay attention to it for four years. Now. I'm standing here five years after my college educated degrees over telling you, I wish my mom and dad would have stayed involved. Because I was foolish, and I wasn't doing so well. You know,
Jennifer Smith, CDE 47:53
I think today is easier. Again, technology here is a huge pro in the fact that as long as the teen. And I think under the age of 18. Still, as a parent, you're you're the decision maker. You just are. And the kid says Well, I don't want you to follow me anymore. Too bad. Yeah, you're gonna be followed.
Scott Benner 48:12
I'm so sorry. Yeah,
Jennifer Smith, CDE 48:13
I pay for this, I pay for that I, you know, so sorry. But I think some of that, again, leads into how you navigate the discussion of, if you're doing these things, I'll be off your back, which is what a teen wants. It's not that they don't want you to care. It's that they don't want the constant hovering, that diabetes can bring into the picture. From a parental standpoint, right? You want to be involved, you want to be able to tell them more about what to do and how to do it and whatever. Because you think you know more. I think it only is when you need to step in only when you can really tell that they're just they're just not doing yet. They're not following the steps that you put down. You must do this, you must do this, you must do this, and I'll be off your back.
Scott Benner 49:02
This is not too bad. So Arden had a situation a couple weeks into college, Arden doesn't drink and her roommates get drunk, and they come home and she feels very parental towards them because they're not in control themselves. So she's like, trying to help them. They're vomiting. She's disgusted by the whole thing anyway, like, I wish you could see oh, yeah, chain back and forth where art is like, I do not understand why people drink like, you know, she's like, I'm really This isn't me, I don't get this. I don't want them to get hurt. And so, you know, again, what happened overnight while this was going on, she let her blood sugar go up. She stopped paying attention to herself. And not in that moment, but later and I let a lot of time pass. I got her on the phone one day I said hey, we have some things we have to talk about. There was some school stuff. There was some stuff about money and how other things and I said and here's the last thing, here's the order. It's you. You You were first and when I They say you, I mean your blood sugar. Okay? That comes first, then everything else comes after that we don't give away our health for somebody else. Never, ever, ever. And, and I said, None of this matters Arden, if you go off to college and learn how to do this thing and become really great at it, but along the way, start accepting that your blood sugar can be 225 in the afternoon or overnight. So it's not going to matter. Because that's it, your your health is going to be destroyed, you're going to know how to do something and then be fighting with poor health your whole life instead, this this is first. And that that is a place where I stepped in and made that point, she also knows. And I want to say you can't just start making these, like pronouncements out of nowhere. You've got a parent like this the whole way they know this is the expectation like she had absolutely, she had a roommate that kind of, I don't want to say alright, there was a person who kind of wasn't handling being away at college well, and Arden said to me, I know if I acted like this, you would drive down here and get me. And I'd be living in my room and going to the college up the street from the house. And I was like, Yeah, but that was sure he knew that because of expectations set up before. I didn't just send her off into the world acting like an idiot. And then one day tell her act, right. You don't I mean, like it's
Jennifer Smith, CDE 51:21
right. Yeah, I mean, it's just as simple as like the setting of a curfew, you're not following through with, I come home at 11 o'clock, because my parents told me that the time I had to be home, I can guarantee that transitions over into your diabetes management. Yeah, you're probably also not following those 123 steps that are must dues in terms of your management that your parents have set out for you. In order for them to not text you 62
Scott Benner 51:47
There's the last one, we'll do it quick. Because there's it's a long thing this person says this is one of the top things that comes out later from families that I meet when they're talking about issues. It generally is that one parent or caregiver does not learn anything to the point where they can alleviate the need to help the main caregiver. And for initial training and pump training. Emphasis really needs to be on all caregivers attending. So it sounds like I hate to say what it sounds like it sounds like boys don't pay as close attention as girls, when they act like oh, you're gonna take care of it. Listen, I don't care if it's 2022 or not. I know men, this is what she's saying. You don't have to say anything to me, there is a higher there is a higher rate of divorce with families with chronic conditions. And this is a huge this is one of the huge ways that leads to complete burnout for one person. So I'm going to tell you that after Arden was diagnosed, however, many years ago, the endocrinologist pulled us aside and said, Listen, rate of divorce goes up when you have a chronically ill child. And then she pointed at me and said he's not going to and started like he she didn't know me.
Jennifer Smith, CDE 52:58
She was and you're like, hey, here's the stay at home dad,
Scott Benner 53:01
wait a minute, my wife laughed, and she said, Listen, if one of us is gonna leave over this, it might be me, not him. You don't know him, you know. But listen, whoever you are, in the scenario, don't care what's your, you know, if you're male or female, or whatever, it doesn't matter, like, but there is going to be some person in your relationship. Who gives that like, I don't know, you do it thing. And that's this person saying, if you get caught in that over and over again, eventually, it's going to be a landslide, you're gonna get knocked over. And you're gonna look up and say, nobody's helping me, especially this person here who I expected to be helping me because we said that there was part rich or poor, you know what I mean? And now something happened. And you're, you're out, you know, so
Jennifer Smith, CDE 53:43
which also makes it harder. As I said earlier, it makes it harder if it does end up in a break in the marriage, and one person has been the Navigator. And the other one, which potentially contributed to at least some of that break. Is doesn't know anything. So then where are you left in terms of now the child having time with both parents, which is necessary from a child standpoint, but not from a health standpoint? That other one still doesn't know enough to manage? Well, yeah. And that's unfortunate.
Scott Benner 54:17
Do you see this? I mean, the idea of there's more divorce? I mean, do you meet with a lot of divorce people?
Jennifer Smith, CDE 54:25
I have never met I have to say I've never met with any family that has separated or divorced while I've been working with them with relevance to not all but some inclusion of the diabetes piece of it. I have met with people who've already been divorced. And I know the definite difference in management. Some families they do have an astounding job. Despite being separated and child one week is one place one week is another place but they The data doesn't change enough to reflect one being more hyper vigilant than the other, like, you know, being out for the counter. But I have a couple of families that certainly that's the case where one parent is definitely on top of everything. And then when the kid goes to the other parent, it's almost the complete opposite. It's almost especially for the teens, where that other parent just feels like well, they're old enough clearly, they can get themselves dressed, they can make themselves food, they can shower, they can get on the bus, they can do their homework. Clearly they've got this. Why would I have to step in?
Scott Benner 55:37
Well, yeah, because diabetes is difficult and their kids is the answer. So Correct. Well, Jenny, I really appreciate you doing this with me. Thank you so much.
You know, if you like Jenny, she works at a place called Integrated diabetes, and you can find her at integrated diabetes.com. She is for hire, if you need help with your type one. I want to thank today's sponsors on the pod and remind you to get yourself in on the pod five or an omni pod dash at Omni pod.com forward slash Juicebox. Podcast huge thank you to one of today's sponsors, DJI voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. you spell that GVOKEGLUCAGO en n.com Ford slash juice box. Thank you so much for listening. If you're enjoying the podcast, please take the time to share it with someone who you think might also enjoy it. Show them how to find a podcast app, how to download it, how to subscribe and follow and where to get the episodes that you think will help them most. Thank you so much for listening. It means it means a lot to me. You have no idea actually. Let's IT support the sponsors. Come back next week. Download old episodes, find the Facebook group Juicebox Podcast type one diabetes. That's all for now. I'll be back very soon with another episode of The Juicebox Podcast.
Test your knowledge of episode 788
1. Why is it important to have a personalized diabetes management plan?
2. How often should blood sugar levels be monitored during illness?
3. What is the role of basal insulin in diabetes management?
4. Why is it important to stay informed about new diabetes research?
5. How does regular physical activity benefit people with diabetes?
6. What should be done if blood sugar levels are high during illness?
7. Why is stress management important in diabetes care?
8. What is the best approach to handle a low blood sugar episode during exercise?
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