← Diabetes Connections | Type 1 Diabetes
Diabetes Connections | Type 1 Diabetes
"Every trip is a learning experience" Advice from travel-loving T1D parents, Sarah Steward Holland and Nicholas Holland
00:49:53
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- [00:01]
A
Support for this episode comes from Dexcom. One of the coolest parts of a Dexcom CGM system is how seamlessly it fits into our lives. Dexcom G7 can connect directly to an Apple Watch. With Dexcom direct to Apple Watch, you now have freedom and flexibility to go on a run, leave your phone in the car while running errands, or leave your phone on the charger while you're in another room. Or, let's be honest, when Benny has no idea where he left his phone, all while still getting the most accurate glucose readings in real time right on your wrist. It's also waterproof, comfortable to wear, and now comes in a 15 day version for adults. Benny is independent and active, so this level of freedom matters for me. It's one more reason why I trust this technology. If you value real life usability, give Dexcom G7 a look. This week on Diabetes Connections let's talk Travel. It's that time of year when we start getting ready for family vacations and trips, big and small. Whether you're driving to the beach for a long weekend, heading to a week long family reunion, or taking that dream vacation overseas, diabetes makes everything just a little bit more complicated. I'm talking to Sarah Stewart Holland and Nicholas Holland, parents of three boys, one with type one. Nicholas has put together a great T1D travel guide and we have a helpful and eye opening conversation about taking diabetes along wherever you go. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I'm your host Stephen Stacey Sims. We aim to educate and inspire about diabetes with a focus on people who use insulin. My son was diagnosed with type 1 more than 19 years ago, right before he turned 2 back in 2006. My husband lives with type 2 diabetes. I do not have any kind of diabetes. I have a background in broadcasting and that is why I started this podcast in 2015. We are on the cusp of summer vacation season and I mean I know this year might look a little different. Gas prices are certainly changing some of our plans, but it is still the busiest travel time of the year for most families. We have a family reunion coming up for Slade's side of the family for my husband's coming up and they mostly live in upstate New York. Two years ago we hosted everybody here for Memorial Day and here in Charlotte it was colder that weekend than it was in Utica, New York. It was a mess. We had really thought it was going to be a beautiful outdoor family reunion. I think we had close to 30 people, most of them staying here in my house. Oh, my goodness. It was a great time. It was so much fun, but it was rainy and 52. Luckily we had a lot of projects. We played a lot of cards and we actually went through a ton of his family photos. We had buckets and buckets of family photos. So we had good projects. But this time around, we're going to upstate New York and it'll be fun. I'm hesitating because I know it's going to be chilly. I lived there for 10 years. I went to school Syracuse, and then I moved to Utica for my first job and back to Syracuse and I moved here to get away from that weather. But it'll be beautiful. It'll be beautiful. Don't be mad at me, New York people. Okay. My guests this week are the parents of an 11 year old with type one as well as two other boys. The their son Felix was diagnosed at age 7. And as you'll hear, Sarah Stewart Holland and Nicholas Holland love to travel. And they quickly realized they needed to figure out Type one on the road. Nicholas has created, let's call it a dad level guide, not a medical one, more of what we would call a been there, done that. It is very in depth. I think it's fantastic and I'm going to link it up. Some of you likely know Sarah from her really popular podcast, Pantsuit Politics, and some of you may know her from her fabulous talk at Mom's Night Out Charlotte. We released that as a podcast episode as well. So I'm gonna link up all of that information, where to find her podcast and where to listen to her talk in the show notes over at diabetes-connections. Com. In our conversation today, I added a lot of my family's stories and as you'll hear, we have different ideas about what works best. And part of that is because our kids are very different ages. Part of that is because the technology, and I put technology in quotes, was very different when my son was diagnosed, as opposed to their son. But I think that differences are a really good thing and hopefully you can get some advice that works for you. Happy travels, everybody. My conversation with Sarah Stewart Holland and Nicholas Holland right after this, from the very beginning, they mean everything to you. And that means you'd do anything for them, especially if they're at risk. So when it comes to type 1 diabetes, screen it like you mean it. Even if just one person in your family has type one, you're up to 15 times more likely to get it, too. Screen it like you mean it, because one blood test could help you spot type 1 long before you need insulin. Talk to your doctor about how to screen for type 1 diabetes because the more you know, the more you can do. So don't wait. Visit screenfortype1.com to learn more. Again, that's screenfortype1.com. Sarah and Nicholas, welcome to Diabetes Connections. Oh, this is gonna be fun. I am thrilled to talk to you both today. How are you doing?
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B
Thank you. Thank you for having us.
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C
Yeah, we're doing great this morning.
- [05:32]
B
Excellent. It's a beautiful day in Paducah, Kentucky.
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A
It's a beautiful day in Charlotte, North Carolina. I think we're over our allergies. I'm hoping it's disgusting and green here for much of the spring, so fingers crossed. Do you have that allergy season there?
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B
We do, but it's yellow. The pollen is yellow everywhere here.
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A
It's very festive. Where is your next trip? Let's start there. We're talking about travel today.
- [05:55]
C
Our next trip with our child, who's the one who has type 1 diabetes, is this summer. We are driving from Dallas, Texas. We're going to pick him up from Camp Sweeney to Typhoon Diabetes Camp. And then we're going to drive from Dallas kind of up the middle of the country, see a bunch of states that we haven't seen before, or at least some of us haven't seen before, and then end up go up through Oklahoma, Oklahoma, Kansas, Kansas, Nebraska, North Dakota, South Dakota, over to Montana.
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B
We're going to see Wind Caves, Badlands, Theodore Roosevelt and Glacier National Parks. We're big national parks, people. We've seen 38.
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A
My family, all four of us, I've shared before. We're trying to go to all 50 states together. And all of those states you mentioned, that's what we have left.
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B
Yeah. We're not after we do this trip, and we're thinking in the fall, we're gonna do the New England area and then we won't have a ton. I mean, we have, like, Alaska. Alaska's a real, you know, real pickle when it comes to the national parks, too, because there's eight up there. You can only drive to two. I don't really trust Alaskans and their flight safety. They seem to take it real.
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A
Yeah. You basically get a plane when you're 15. It's like getting a permit here in
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B
North Carolina for a car. I'm nervous, but I'm trying to get past it.
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A
All right, so let's go backwards because you are big travelers, and you had a trip planned pretty much right after your son was diagnosed. Sarah, let me start with you. A diagnosis with type 1 is a big deal anyway. But tell us about what was going through your mind in terms of travel and that trip you had planned.
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B
It's not my proudest moment that the first thing I thought was, oh, my God, what about our trip? That sounds awful. I will say I had space to think that because we had a incredibly not dramatic or traumatic diagnosis. Actually, we had come back from a trip as, like, so many people do. Right? Like, you're. They. What do they call it? The Disney diagnosis? We weren't in Disney. We were in Utah, seeing the Mighty five, the five national parks there. And we noticed that he was, like, peeing a lot. We came back, it was Easter Sunday, and Nicholas had said this about our two older boys. Like, they peed a lot. I didn't even know that was a symptom. And he's like, they have diabetes. Cause again, we. As you will learn over the course of this conversation, he is a catastrophizer. And I was like, no, he doesn't. But I just happen to have a glucose meter. I took it Monday morning, and he was like, 300 when he woke up. And I was like, well, this is. These are expired strips, of course. Then I took mine, and I was like, 1:10. Um, so I called my pediatrician, and she was like, okay, just bring him after school. That'll be long enough after lunch. So I took him after school. I saw it in my chart before she even called me. He was 300. She's like, you gotta go to Vanderbilt. We drive to Vanderbilt Monday night. He's on insulin by 10pm they hook us up all the next day. We spend one night in the hospital. He is at school on Wednesday. He was not in DKA because we had caught it so soon. Also, I think we're not intimidated by travel because we're not intimidated by information. That was also a skill that was useful when being diagnosed with diabetes. You know, like, neither of us are. We were both trained as lawyers. I'm a podcaster now. He's still a lawyer. But, like, we don't get overwhelmed with a lot of information. So that part we were kind of like ducks to water. Like, we were. Well, I remember calling the nurse, and she'd be like, well, some people don't want a carb count for six months. And I'm like, I would have left the the hospital with a Dexcom. Like, just tell me what to do
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A
and we'll do it.
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B
You know what I mean? Like, don't. Don't hold back on us. We want it all at once. But I did. I thought immediately about our trip. We had a trip planned to Europe that summer.
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C
Yeah. So to give the timeline, basically, he was diagnosed April 15th or 16th. I always forget exactly which day it was of 2021. Correct. Right.
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B
No, 22.
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C
Sorry. And we were supposed to leave for a two and a half week trip to Europe, like July 14th of 20 of that same year. One of the first things I did as a catastrophizer, which is what I am, was I kind of go, oh, gosh, that doesn't. I'm not sure I'll be ready for that. It already feels like we need to kind of like hunker down and figure this thing out. Of course, that's so foolhardy now. Like, you never really figure it out, but.
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A
Well, and just to set the table, and sorry to interrupt, you have two other kids. How old was everybody at this time?
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B
Oh, approximately.
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C
Griffin would have been 13. We had. We had 13, 11 and 7.
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A
Yeah. And had you done a big family trip like this before to Europe?
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B
Not to Europe. We. The year before. We had one planned during COVID along with the rest of humanity, and that obviously got canceled. So in 2021, we went to the Pacific Northwest and did Olympic, North Cascades, Mount Rainier, Crater Lake and Redwoods. Like, it was a big trip. We drove a lot.
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A
Right.
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B
But you. We had done a two weeks trip together as a family for sure.
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A
Right. Okay. I just sit in the table because going to Europe with kids is crazy, no matter when you do it. And then you throw type one in there.
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B
And this was a big trip. Like, we were flying into Milan. We were going up through the. Because we kind of wanted to do a lot in one trip. I'm a. You know, like one time we went to. We went and stayed with a friend of mine in Washington, D.C. and we would get up at like 8 and we wouldn't come back till 8pm and she was like, at one point I called my husband. I was like, shuck. Find out where they are. You think they're okay? They've been gone all day. And I'm like, no, baby, that's just how we roll. So we were going up through the north, Italy, through the lakes, Lake Cuomo. Then we were taking like a. This crazy, like, ferry to a bus to a rental car. Then we were picking up a rental car, driving through Switzerland, through France, the south of France and then taking a train to Paris. It was a big. I mean, it was three countries. It was probably, gosh, 10 different places that we were staying. It was a big trip with three kids.
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A
Okay, was there a turning point that said, we are going to still do this?
- [11:34]
C
I don't think we ever had a point where we both kind of looked at each other like, this isn't going to work. Honestly, I think I remember talking to my mom about it briefly after. Right after the diagnosis and saying, like, I don't know. Should we go? Shouldn't we go? My mom's kind of a worrier, too, and she was very much like, you have to go.
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A
Yeah.
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B
So that makes me cry. You're tearing up, too. That's not like his mom. I didn't even know that story.
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A
Oh, that's great. Because they know my mom did the same thing. When my son was diagnosed, we had a trip away from the kids planned for two months later, and my parents were gonna watch the kids, and they both said, you have to go. But the kicker is, my mom and dad said, well, we're not gonna give them shots. And I'm like, well, do I have news for you.
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C
Somebody's gonna do it.
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A
Yeah, it all worked out. And we went.
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B
But, oh, my gosh. I remember, like, we'd done. We were out of town. I don't even remember where we were very early, and my mom had to change a Dexcom was so stressful having to. And now I don't even, like, think about it. And they're really good about it now, but, Lord, it's hard.
- [12:28]
A
They're not around it every day. They don't want to get it wrong. All right, so you decide to go, and you do have a fantastic travel guide that you've put out. You have lots of information now. You've got a lot of travel under your belt. But was there anything that stood out from that first trip?
- [12:41]
B
There's a photo in the ebook and the travel guide Nicholas has put together of him giving, because we were on NDI and giving Felix a shot, like, literally in the middle of the Alps. It's a great picture. But he, like, had to give him a shot. And I was like, oh, we gotta capture this. What I remember learning really quickly from that trip is like, oh, we're moving so much. This makes a lot of this a lot easier. Like, we're just. We're walking, we're moving, we're moving, we're walking, and the food's different. But I don't Know if we figured that how. Like, I don't remember how soon that kind of hit us.
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C
No, I don't know. I think that trip specifically, I just remember it's a lot of just figuring it out, you know, like, what are we going to do with all these sharps? Like, what are we going to do with all these damn syringes and pen needles and everything else? You know, you kind of figure it out. You look it up on the Internet and they tell you just shove it in a plastic bottle and throw it away and go on with your life kind of thing. You know, it's. It's the. Every trip is a learning experience in that respect. So that one, that first one was really like, okay, what did we not think about when we showed up?
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B
You know, But I don't, I don't remember. We didn't run in out of anything. We didn't have any, like, emergencies where we literally didn't know anything.
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C
I mean, we were. We did have some insulin go bad on us at the very, very end of the trip. I think it had just been kind of in and out of too many temperatures. But, yeah, that was before we had any kind of really cooling option. We really, literally were.
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B
Did you not have your little fridge on that trip?
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C
No, we took.
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B
Oh, my gosh, I don't even remember,
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C
like a vial and two pens of each. And we, I mean, we just kind of freestyled it a little bit.
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A
All right, let's stop you right there. Let's talk about keeping insulin cold because many adults listening are like, I don't need to worry about that on a trip, but when you have a little kid and you're using wisps of insulin, you really want to be able to preserve as much insulin as you can go, coming and going, and have enough for backups. What do you recommend to keep insulin cool on trips?
- [14:25]
C
What we use almost exclusively is by, and I'm not a sponsor, is a. It's called for all family. And it's kind of a hybrid unit. It's kind of like a big yeti cup with the lid on it. Right. So it's a double walled, stainless steel cooler. Mini cooler. Looks kind of like a. It looks like a canister and that has a gel pack or a gel thing that goes with it that you freeze and that can get. That's for good for like 48 to 72 hours. The other piece is basically a mini refrigerator. It's a condensation coolant, has a fan, runs off a USB battery, and that's Primarily what we use to keep insulin cool. And that is you hit it right on the head, which is we do we take the vial we're currently using, we take a long acting and a short acting pen just for backup and then we take another vial on top of that. And you really don't want that spoiling because you're not going to use all of it otherwise. Right. You're going to end up having going well beyond the recommended room temperature storage. So we, that's the way we keep it cool. And that unit has its flaws. I have some thoughts and some recommendations for the, for the next generation of it. But it has worked really well for us as far as the cooling when it works and some of those minor things don't get in the way. It's a lifesaver.
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B
But tell them why you, what else you bring to check their refrigerators in the room?
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C
Oh, I mean I, I have a. Just a small thermometer because notoriously mini fridges in especially in hotels are just,
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B
they're not all over the map.
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C
They're all over the map. Where we just stayed in a big bend was an old lodge and the refrigerators were probably 40 years and it froze everything. It froze everything. Now we didn't put the insulin in there and we just used the refrigerator coolant the whole time. We just plugged it into a USB wall and plug and that was it. And that we left it there.
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A
What we always did for those little mini fridges is if we were there for more than a night, you put like a little cup of water in and see what happens.
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C
That'll work too, you know, or you
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A
could bring a thermometer and do it.
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B
Well, he loves the tool. Oh, you're going to love this. You're going to learn this over reading the book like, or, you know, listening to him over the course of this interview like he just loves a tool. And tell him your, you know, supply rule, what is it? Three is one, two is none, one
- [16:22]
C
is two is one, one is none. So always better have a couple of backups if you can do it. And I will say I think people are probably going to think, well, this guy takes another suitcase full of stuff. And that's just not the case. When we pack for these two or three trips, we only carry on and the primary stuff that we carry can be carried in one of those makeup boxes that it's always recommended with a couple of exceptions, you know, and now the Dexcoms are smaller, the boxes aren't so giant. It's a Lot easier.
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B
Yeah.
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A
Oh, I love to hear that. Because we're carry on only people too. And when you have, you have a five person family, we have a four person family. If you need a little extra room, you can always find a pocket of somebody else's carry on to stick a Dexcom in or, you know, a little bit of extra stuff. A meter can go over there. I'm not going to go through the obvious like don't check your diabetes supplies and, you know, always keep stuff with you because I think everybody knows that at this point we've done a bunch of travel episodes and I think what really stuck with me years ago was, you know, you can have a high blood sugar at home or you could have a high blood sugar in Italy or in a national park. So why stay home if you have the opportunity to travel? Yeah, but it's funny to talk about that because in my head I was just thinking, when you're flying, it's very different when you're driving. We actually struggled more with high blood sugars when my son was little driving. Now, this is before aid systems, but even any advice for that? I mean, you're just sitting still for so long and everybody wants to have those road trip snacks. And we're not a, we're terrible. We're not a carrot and celebration rage.
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B
Bolusing. Good advice.
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C
Yeah. I mean, other than the obvious, you know, you can crank your basil, you can, you know, do all the things that you know to do when activity is low. But you're right, travel is difficult because it is. It's a combination of, you know, a change in all the routines, a change in, in how much you're moving and then a change in what you're eating. And so you're going to have those size. And I think your advice is the best advice, which is sometimes during travel you just have to kind of roll with it and just keep doing the thing you're doing and manage the diabetes while you're doing it and give the insulin and trust that it's gonna work eventually and keep an eye on it. And the tools have been. Are so much better now that you can do that in a way.
- [18:15]
A
So now I asked this question, knowing that you guys keep it tight. Your son is very well managed. You're wonderful parents. You've already admitted that you're a catastrophizer. Nicholas and I don't know. Yes, yes. How do you manage yourself when your child is going high in the car or, you know, not exactly sure how to bolus or you know, things are very uncertain on a vacation. How do you balance what you've kind of admitted is your, you know, type A gotta be perfect with diabetes with also knowing your kid's a little kid and you don't want him to feel that pressure.
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B
And his wife is gonna make everybody stop for gelato once a day. He's always like, must we get a treat? And I'm like, yes.
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A
Well, I don't want to. You know, we've just met, Nicholas, so I don't want to be too intrusive, but I'm curious how that works. I think it's helpful to understand that. Right back to our conversation. But first, Diabetes Connections is brought to you by Omnipod.
- [19:18]
B
Did you hear the pod drop?
- [19:20]
A
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- [20:09]
C
Sure. I think it. Well, what I would say is it comes with time. I was not good at it for a long time. I would sit there in the car with the Follow app on. Forget the Maps app. I had the Follow app. Every reading was. Was a new reason to freak out and. And think what you learn with diabetes is you. You gotta roll with it at some point, right? And that. That only comes with time. I can't give anybody advice that says, this is how you deal with it, but you deal with it because you realize he's gonna live a long life and a couple hours being high is gonna happen a hundred times this year. You've got. You just gotta react to what you can react to and deal with what you can deal with. Which isn't to say that sometimes we do pull out the, you know, the rage bolus, right, and go, this isn't working. So let's just bring him low. And if we bring him low and give him a juice box, it's not
- [20:52]
B
the end of the world jumping jack contest. Let's go everybody, right?
- [20:54]
C
I mean we've been known to, to do a dance contest in the middle of a restaurant to try to bring his blood sugar down. I don't know. At 8, I think he thought that was fun. At 11 and 12, I'm thinking he'll think that's cringe, but that's where we are. And I think ultimately it had to be just something I did. It was about me and not about him and figuring out my own.
- [21:13]
B
Don't you think the travel got you there faster though?
- [21:17]
C
Probably, yeah. I think it did help because you do face, it's a, there's a lot of fears that you have when you travel that way because just the medical systems are different and you know, you can take all the prescriptions and information and you whatever you want to Colorado and they'll honor it. You take it to Switzerland and they go, this isn't good enough for us. You have to go to our hospital or our doctors to get what you need. And so what that looks like and try to figure out what that looks like. And then realizing that's probably the rare
- [21:41]
B
case, you know, we're saying we've never had encountered that he brings everything, he brings it all translated. But we've never encountered that one time. But it was like where we were like going, we were like in Missouri or where were we that time we had to stop at a cvs.
- [21:54]
C
Oh, it was Illinois. We weren't even going very far. And we, we, I don't know, it was 65, 70 miles from our house. And I went, I didn't pack any insulin for this like week trip. Like not an ounce, not a, not a centimeter. And I was like. And so we, we thought, okay, what, what's our game plan? What prescriptions do we have that we can refill right now? And we saw, hey, we've got this long acting pen prescription. Let's just find the nearest CVs. We'll have them transfer it here and we'll buy it and suck it up. That's another thing I've learned just about travel in general, which is sometimes you just have to throw money at things.
- [22:26]
A
Word, oh boy.
- [22:27]
C
If you have it, if you can afford it and you're on this trip and you've already spent all this Money, what's another $100 if you can do it, you know, and to make everybody
- [22:35]
B
somewhere financial advisors are like, oh my God.
- [22:37]
C
Right?
- [22:38]
A
Well, I would also just say that if as you listen quite often most insurance companies will allow a one time emergency refill of insulin at your pharmacy. So if you do forget and you're in the United States, you can usually go to your CVS or your Walgreens and say, this is my one time emergency refill. And they will cover it. Um, we've had to do that twice in 19 years. Um, and if your pharmacy is not familiar with that, you know, just be strong.
- [23:04]
B
Push that press.
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C
No, that's interesting because I, I sort of know that instinctually or have read that, but I've never done it. I mean, did you just walk up to the pharmacist and say, here's what I need, and they try to push it through the system?
- [23:16]
A
Yeah. Well, what happened to us, frankly, is we dropped a vial a long time ago. I think Benny was about 4 or 5 years old. And I went to the pharmacy and they said, that'll be $350. And I said, excuse me, like I. I have insurance. Are you. And she said, there's this thing with the one time emergency. Let's see if it works. And she did it. The pharmacist did it for me. And it did work. And so then we were able to use it another time in Florida. You know, we use cbs. And I was able to pull that knowledge out of my pocket and say,
- [23:44]
B
you know, I'm trying to. I'm trying to think of other. The other like sort of emergency moment I realized I'm thinking of is the beach in Italy last summer where he. Did he pull a pod off and you just. And I thought, oh my God, we don't have one. And we're like an hour and a half from our hotel room. But of course, Nicholas had an extra one in his backpack.
- [24:00]
C
Last year. He walked into the ocean with his cell phone.
- [24:03]
B
With his cell phone. That's what happened.
- [24:05]
C
To provide context, Felix is on DIY loot. So his cell phone is everything for him. And we got to this beach and he got excited and he had his cell phone in his pocket and he walked right into the sea with it. And luckily we had a backup that we could. It took us a minute, but it didn't.
- [24:22]
B
Luckily, Nicholas had a backup. Let's not say we. Let's say more credit than I deserve.
- [24:26]
C
We were. We had a backup phone. We were able to get his SIM card out, figure out what Dexcom actually had to call Dexcom to try to figure out what. From the beach?
- [24:34]
B
Yes, from the beach.
- [24:34]
C
To figure out what the code on the. For the. To pair. It was.
- [24:38]
B
That was hard. That was the. That was the moment it Was a real teen moment.
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C
It was a real teen moment there. So.
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A
But I was like, how are we
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B
going to get the code off the Dexcom?
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A
I'm going to imagine that if you had not had that backup cell phone that you would have been okay, right? You had pen needles, you had stuff.
- [24:56]
C
Oh yeah, we had pen needles. And I had done all the, I mean again, listen to this. I had done all the calculations to figure out before we left if we have to switch to long acting Basil, how much should I give him? Okay, down to that. The number of units we would give him when we would start, how we would start. And then so I, yeah, we, we had it covered. But that was our, that's our second backup. You know, first backup is another phone and another pod. Second backup is.
- [25:21]
B
We're saying that we've done. So we've done from that first trip to Europe, we've done two. A trip to that first trip to Europe, a trip to the uk, a trip to Japan and a trip to Italy. And those are like our big summer trips over the last four years. The first one was on MDI, the next two were on Omnipod and this last Omnipod 5. And the last one was on Loop. Just for.
- [25:43]
A
Yeah, absolutely.
- [25:44]
B
Context.
- [25:44]
A
I, I ask about the phone because we have had two big instances that I, I've told stories about already where, you know, these kids are little and they shouldn't be responsible for this kind of stuff. Where Benny has lost, had lost his cell phone. Now he is not connected for his care to his cell phone other than like, you know, Dexcom follow. He uses the tandem x2 so everything is self contained on the pump. It's not a big deal. And I tell this story because we lost it at Universal, you know, theme park. And it was an old phone. I wasn't too worried about the phone but we couldn't get his Dexcom readings at the time. This is like so old fashioned. It's so funny. The readings weren't on the T slim yet, so you could only get them on a Dexcom receiver or on a phone. So we just did finger sticks. Like he still had a Dexcom in his arm. But we did finger sticks every two hours and we stayed in the park and I had a, I saw a Facebook post the other day of someone who said we would've had to leave the park. Like, oh, we lost the phone. But then we found it and I'm like, don't leave, just do it, just do it. And the other time we lost his phone Was one of. On our huge travel trips for my parents 50th wedding anniversary, we went to the Galapagos.
- [26:49]
B
Oh, my gosh.
- [26:50]
A
And he left his phone on the plane again. An old phone. He was like 9 or 10.
- [26:55]
B
Yeah.
- [26:55]
A
I mean, you know these kids. And again, it didn't control anything, but it made things a little bit more difficult. So I feel you. I can tell my own stories about prepping for the Galapagos.
- [27:06]
B
We have never done a. We've never done a finger stick trip where we've had to finger stick Jess. No, no, we've always had it done.
- [27:12]
A
We did seven years of finger sticks, so that's not that big of a deal. Yeah, I know. Isn't it funny how things change? Yeah.
- [27:18]
B
Well, you know what else I think works out really well for us is we always vacation in July, which means he's just gotten back from Camp Sweeney. So he goes to Camp Sweeney for a session every summer. And it's like he's like, leveled up in his independence and his management right before we go on a trip, which I think sort of like locks in the Sweeney lessons and the Sweeney level up. So it's like a good combo. I mean, he's really going to go from one. We're going to literally pick his little butt up this summer at camp in an rv. So, yeah, I think those, like, the combo of him, like, kind of being independent and then showing up on the trip and having to, like, put some of that into work is. Works really well.
- [27:51]
A
I could definitely see that because diabetes camp preps them for so many good things. You know, we talked about driving, but we didn't really talk too much about flying. Any advice? I know it's. It encompasses a lot there. We talked about packing, but when you're actually on the plane, do you different.
- [28:06]
B
Now, that was the longest time that
- [28:07]
A
you did at the beginning.
- [28:09]
C
The beginning.
- [28:10]
B
Japan is like, you know, 13 hours. You fly back, you fly to yesterday, you fly back in time to get to tomorrow.
- [28:16]
C
Right. Well, I think when we first started flying, you know, it was again as a learning experience. It's okay. Well, you kind of forget. Well, his cell phone's not going to work. He's still going to get Dexcom readings. But that means you got to keep him close. But he wants to be with his brothers, so you got to kind of figure out happy medium there as far as. Okay. I don't have to be on top of every reading. I can ask him to tell me what it is every 20 minutes. You know, we can figure that. That piece out. The other thing, of course, is that, you know, they want to feed you on a plane. Every time you know, you get on one, you know, for an hour trip, they want to throw a snack at you. And to tell a kid, you know, you got to do 15 minutes of pre bolus after they hand out everybody else around you. Literally everybody else in the whole plane is eating their pretzels or whatever else. It is a hard left, you know, so you either have to let go of the pre bolus or you have to remember to do it right or whatever. But then, of course, there's always that opportunity or chance that they're going to start the service, and then there's going to be so turbulence and then five minutes and everything. And also kind of letting go of some of your other rules about things like, we're not big soda people. Never have been. But on a plane, he can have Diet Coke. It's kind of like a treat for him to be able to do that. And so I think from being on mdi was obviously hard. In a plane with a pump, it's a lot easier. But you do have to watch for things that, you know, there are some pumps that they issued warnings about cabin pressurization causing leakage. So you do have to be a little bit more on top of. Is he dropping for a weird reason, or is there something going on here? Do I need to suspend insulin? Um, just depending on what pump you're on.
- [29:38]
A
Generally speaking, again, as you listen, that's the piston pumps. I mean, you have to be careful with any pump, and you should be aware. But it's like the older piston punts, like my precious animus ping and pumps like that, which animus, you know, rest in peace. The other. The other thing that I always joke about is, and this is something that's well known to the diabetes community, do people still talk about baggage claim lows because you.
- [29:59]
B
Oh, yeah.
- [30:00]
A
Because you sat for so long and maybe giving yourself insulin, then you stand up and you start moving, and the insulin.
- [30:06]
B
I call it a rental car low. Because some of these airplanes, I mean, some of these airports, the rental car places are 2 miles. Salt Lake City. I'm looking at you. Good Lord. You walk for miles on the Salt
- [30:16]
A
Lake City, but your circulation starts. So your insulin actually starts working. And then you're 47 by the time you're at your next gator.
- [30:25]
C
Yeah, for sure. 100%. And he's. He's an active kid. So, like, he's not the kid who, like, you have to wait for him to catch up with you. He's the one who's already at baggage claim. He's run there or he skipped there. He's done something else. So he's almost definitely going well.
- [30:40]
B
And I was thinking about to Lowe's, too. Like, I mean, I think about this all the time. I think the lowest Felix has ever been is on a. In a playground in Paris, and He was, like, 34. And I think if we Is another camp combo, like, he had just gone to camp homidakota, like, right before we left, and he'd gotten to, like, 35 there, because they. They're crazy. They put him on a trampoline in the water. I'm like, that's a hell of a combination for a diabetes camp, But y' all the oldest one in the country, so I'm not gonna critique you. But I think there was something about. Like, I knew he'd been that low at camp, and so when he got that low, like, I didn't. I think I'd have freaked all the way out if we'd been in the middle of Paris and he got to 35. But I'm like, well, he was that way with camp, and he was, okay. We're gonna figure it out. But I think that's the lowest he's been on a trip.
- [31:22]
C
And one thing we've been really lucky with Felix knocking on wood is that he can get pretty low and still be kind of with you. Like, he's not. I mean, it's nothing we want to abuse, obviously, but we've never had a situation where we felt like he was going to fall unconscious or anything, like, in the near term, you know, it's always been kind of like, oh, boy, you're low. We're going to catch you quick here.
- [31:39]
B
But he's also pretty low aware, which is nice.
- [31:42]
C
Yeah, he's got good hypoglycemic awareness, so that's funny.
- [31:45]
A
So he went. He goes to sweeney and hamida kota. Are you.
- [31:48]
B
No, that was just the first year he went to homie Dakota, and then we found out about Sweeney, and it's like, where we live, these camps are far. So if I'm gonna take your little butt to a camp, I want you to stay there a while. You know what I'm saying?
- [31:59]
A
I do.
- [31:59]
B
And kominakota's a week. Camp Sweeney's 18 days, so. And he. That child would stay for all three sessions. If somebody wants to give felix a scholarship to stay at camp Sweeney, just personally patronage, like, sponsor him to Stay all summer. He would take you up on it. He freaking loves it.
- [32:14]
A
Yeah. My plan when Benny was little was to send him on a diabetes camp tour because we're a big camp family. But he wound up actually going to a regular camp. So he'd go to diabetes camp for a week and then regular camp for a month. And that was great. Yeah, it really worked out well.
- [32:28]
B
We are also big camp people.
- [32:30]
A
Yeah, it's the best. But then you can't go to Paris in July, so you have to pick your. Gotta pick your stuff.
- [32:35]
B
Oh, no, they just go all of June and then you go in July
- [32:37]
A
or you go without them.
- [32:39]
B
Right. We have done that. We have given insulin while looking at the Eiffel Tower from our cell phones while he was home with my parents. We have done that on. On loop.
- [32:47]
A
One thing that I have learned and a lot of adults in the community have reminded me is that there is type one all over the world. Generally speaking, you're not going to places where there is not type one. And as, you know, we said earlier, it might not be super accessible. You might be more remote, but there are people and there are supplies everywhere. Did you say you hadn't had to purchase anything or you hadn't had to do any of that while you were abroad?
- [33:08]
C
We've never. We've not yet had to do anything along those lines. That's been kind of lifesaver. You know, everybody's a little different. And sometimes we are very remote. I mean.
- [33:16]
B
And you learn how to say it in every language. How do you say in Japanese? Do you remember? I don't remember either, but.
- [33:23]
C
But no, we haven't had that experience. The. The. The experiences we've had really are not. Are more of that language barrier experience of, hey, I don't want these Dex comps to go through t. The. The X ray scanner. And that doesn't fly a lot of going. Well, why not? Like, that doesn't make sense.
- [33:37]
B
In Japan, he spent, like. I swear to God, it was 45 minutes. Yeah, because they've done. They love a form in Japan. They love a form like a government form. And so they had to fill out, like, six different forms for the dexcoms not to go through. Guys.
- [33:50]
C
Like a triplicate.
- [33:51]
A
We throw everything in the X ray belt.
- [33:53]
C
Yeah.
- [33:53]
B
No, we've done that one. I was like, let's do it. We were in a hurry. We did it once. We threw the Dexcoms through and they were haywire. And then it was like, one time we were like, what's Wrong with this Dexcom. And I'm like, this is the one that went through the X ray machine. You've never had that experience.
- [34:06]
C
It might be confirmation bias. I mean, I think a lot of people in the. Almost all the forums will tell you it doesn't do anything to them. They've never been a problem. We did have this one wonky experience where we do. We do still have them hand check our dexcoms. Just.
- [34:19]
A
I think most people do. And I think, you know, to each their own. What happened to us was years ago, we have a whole circus when we go through the metal detectors because my husband, his half. His body is metal, you know, and then my son with the type 1. So we would always joke around, like, don't be behind us. You want to go ahead of us. And then as he got older, you know, and we're. You're on the cusp of more independence here. My kids would just go through by themselves. Like, we were all taking care of our own stuff. And I turned around one day and I saw him retrieving his insulin pump from the X ray machine. He had taken it off and thrown it through. And I'm like, oh, my God, you can't do. He's like, I've done it three times. I've done it on all the trips. And I'm like, what? And so he's just started putting all his supplies through the X ray machine. Because I'm such a good parent. I noticed. Um, and it was all fine. So he's always done it that way. But again, to each their own. And I will not tell anybody how to do anything.
- [35:07]
B
We hit. We one time we were in a hurry, and we're like, forget it. Just throw it through. Like we were gonna miss our connecting flight or something. And that one was drunk when we tried to use it.
- [35:14]
C
You never know there was more than one. That. That was where it really came through. Like, if it had been one.
- [35:18]
B
Oh, yeah.
- [35:20]
C
But it was like two of the three that went through went off and that again, that could be a bad batch. It could just be one of those weird coincidences for sure.
- [35:26]
A
We could have been incredibly lucky. And then next time we do it, you know, but it's only. It's been 10 years of doing it. So, you know.
- [35:32]
C
Yeah, no, I think, you know, we may get to that point. I think he definitely ultimately will, you know, when he becomes an adult, he'll be the one who's like, mom, dad, come on. Yeah, it doesn't matter. It doesn't matter.
- [35:40]
A
At all well, you know, we're gonna link up your ebook and everything. And I think one glance at how you do things and how we do things, world's worst diabetes mom will kind of bring home the. The way that none of us do type one the same way. Which is fine because we also don't parent the same way. We don't live our lives the same way. You say you're an enneagram6. I don't even know what that means.
- [36:00]
B
You don't know what that means?
- [36:01]
A
What is that?
- [36:02]
C
I don't. So the Enneagram is basically. Enneagram personality types is the easiest way to sort of. I'll get. We'll get some email about.
- [36:10]
B
It's where you go in stress.
- [36:13]
C
So.
- [36:13]
B
And everybody is all the Enneagram types. But fun fact. So I'm an Enneagram one. And the number I have the least of, like I. I should. I've been typed professionally. Is a six.
- [36:24]
A
Where's my married one?
- [36:26]
C
All right, so an Enneagram six is sort of characterized in stress by catastrophizing by. Everything's gonna go wrong. The Sobel is gonna start rolling down the hill, and then that leads to the heat death of the universe. I don't know. I mean, it's to mix. To mix every metaphor.
- [36:41]
B
That's why he makes such a good attorney. This is exactly the kind of attorney you want who anticipates every bad thing that can happen.
- [36:46]
A
Got it.
- [36:46]
C
So that leads me to be a bit of an over preparer. I have a little bit of that survival. He's an Eagle Scout prepper kind of attitude. Like our house, it's filled with things that might be needed in a zombie apocalypse and multiples of them, probably. And so that informs my diabetes preparedness. And Yeah, I mean, I think if you look at the little handbook that we've written, it is like a. This is kind of where I am when I'm feeling most prepared. This. This puts me most at ease to have these things and to have this stuff and to know, like, even if the worst happens, we're probably covered.
- [37:20]
B
Yeah.
- [37:20]
C
Oh, yeah.
- [37:21]
B
And I think so. I think so many people need that. You know, Like, I just think a lot of people. And like, I, you know, for me, why. Like, I encouraged him to write this as a person who's not a catastrophizer. I just think travel is so incredibly powerful for kids. Like, I've seen what it has done for our three boys. Like, I think that it teaches them. We accommodate so much of children's sort of particularities or anxieties, and I think travel in a really integrated way shows them. You can be uncomfortable, you'll be fine. You can be scared, you'll be fine. You can be homesick, you'll be fine.
- [38:00]
C
You can miss the train, you can
- [38:01]
B
miss the train, you can miss the
- [38:03]
C
plane, you'll be live.
- [38:04]
A
Go in the ocean with your phone, you'll be fine.
- [38:07]
B
You can handle so much of this. And a big part of travel for us is food. It was so helpful from the beginning. Now, our kids have never been picky eaters because that's, like, a very important thing to us. So that was already making our diabetes transition much easier. You know, our kids will eat anything, but travel has, like, instilled that in their adventurous eaters. They want to eat a lot of different things, they want to try a lot of different foods and watching. And I think Felix really learns on trips, like, the different kinds of food, how food impacts him. Like. Like how walking impacts him. Like, it's. It's like a walking, moving classroom all the time for all the boys, but particularly for Felix, about his body, because there's just. You know, what I love about travel is I'm in my body in a way that I'm not always in my body in my everyday life. You know, we all get in our heads and we're all sort of thinking about the next thing or the next project or the next day. But when you're traveling, you're very present. You're just. You have to be to your surroundings and to what you're experiencing. And teaching that presence, I think particularly to Felix, is just so important. And I'm so. It's one of the things I'm most proud about. Our kids. I don't ever want that to stop people. And I think anxiety. I think why Nicholas is such a good person for this is I know there's. I have enough people through my podcast who I talk to right as their kids are diagnosed, there's so much anxiety. And I find travel an excellent cure for anxiety. So I just, you know, but I know there's people. I'm like, but don't let that, like, it doesn't need to stop you. You have to do more prep. I think that's, like I said, like, travel. There's so much prep that goes on with travel that I think people are intimidated by. And so what I just always try to do on every level, just traveling with kids, traveling overseas, traveling with diabetes, is just say, like, it's. You can do it like, you can just do it. You can do it.
- [39:52]
A
And how old is Felix now? 11.
- [39:54]
C
11 years old.
- [39:55]
A
How's he doing?
- [39:56]
B
He's awesome.
- [39:56]
C
He's doing good. He's doing really good.
- [39:58]
B
He's awesome. He's tough. He's a tough kid.
- [40:00]
A
I do want to ask if I could. You know, you've got the two older boys, too. What is it like for them when, you know, you're traveling and you have to stop to check a blood sugar or you have to worry about this on the plane? I have a daughter who doesn't have type one who's fantastic on these kinds of things, but also will say to me, this sucks. Why can't you pay more attention to me? Like, I do it, but I don't like it. How are your boys doing?
- [40:21]
B
Well, one of my favorite things is we travel often with my best friend and her family. She has five kids.
- [40:26]
A
Oh, my God.
- [40:27]
B
Five kids. And one of the oldest is just a doll baby. He's just conscientious and responsible. At one time, we were walking through Edinburgh and Felix had a low blood sugar and nobody wanted to stop. So Dave was like, I'll just carry him. So he carried him on his back so he wasn't. Wasn't moving too much.
- [40:43]
A
It was great.
- [40:44]
B
I was like, this is a great solution. We're just gonna take Devin everywhere.
- [40:46]
A
We get a Sherpa.
- [40:48]
B
Yeah.
- [40:48]
C
Yeah. But our. Our omaboards have been. Always been pretty good about it. For the most part. I think there is that always that attentional thing, which is, am I giving them enough? Am I giving. Am I giving too much to this disease really, and not enough to them? But for the most part, they're pretty good about it. You know, they're always a little mean to each other here or there. I think there's probably some teasing even around diabetes occasionally.
- [41:09]
A
That's good.
- [41:10]
B
In case you're not picking up on what we're laying down here. I travel because I think it's good for our kids, but I don't travel for the kids. The trips aren't for the kids. You see what I'm saying? Like, they're not oriented to their whims. If they're tired and they don't want to go suck it up, you're going to go on the hike anyway, you know, like, so they're kind of. I think both of our older boys are already used to being, like, doing things on trips they don't want to do, going when they're tired. It's like Sleeping, sharing a bed with a brother they don't want to share a brother with. You know what I'm saying? Like, yeah, so they're, they're, they're threshold for frustration as far as, like being kind of jerked around on a trip. Pretty high. So diabetes was like, really didn't faze them, you know.
- [41:47]
C
But I can, I can recall a few situations. You know, there's a lot of times when, you know, we want to try the treat, but we don't want everybody to have a whole one.
- [41:54]
B
Yeah, the teenage boys are getting real done with that.
- [41:57]
C
Some of that's driven by concerns about diabetes. You know, we don't want. Felix doesn't need to eat a 95 gram tarb ice cream right after we just had pizza and everything else. So, you know, we'll get one to share. And the perception can be, well, we're doing this because of Felix.
- [42:10]
B
Yeah.
- [42:11]
C
And that can be. That can. That has caused a little bit of light.
- [42:13]
B
There's a lot of like, no, we wouldn't let you have. Any of you have this even if there wasn't diabetes.
- [42:17]
A
But they don't believe that I did
- [42:19]
C
that, even though it's really true.
- [42:20]
B
It's true.
- [42:21]
A
But they're like, they don't believe that. Right. We get it. We've been there for sure. Okay. What's your dream trip with or without kids? What's your. Each of you? Do you have different ones? Do you have the same one? Where's your dreams? Well, I think the one we've already.
- [42:32]
B
The one we've already taken is Japan. That was a dream trip for our family for sure. I think my next one is probably Africa. I want to do a safari in Africa. What about you? Talk about keeping insulin cold.
- [42:43]
C
We've never been to South America. Yeah, I'd really like to do Brazil in particular, Chile. But we'd never have looked that way. We've always looked so hard.
- [42:52]
B
You don't get your time back. You just fly for hours and it's. You just lose it.
- [42:57]
A
I love it.
- [42:57]
C
It's just gone.
- [42:58]
B
It's just gone. Yeah, you guys fit it again coming
- [43:01]
C
back, but love it.
- [43:02]
A
Is there anything that you wanted me to ask that I didn't talk about? I mean, I kept you a little bit longer than I had wanted, but it's just fun to talk to you too.
- [43:08]
B
No, we want. Now it's our turn to ask you. Oh, Felix is going into middle school. You're always been my standard for diabetes. Independence. So what should we like as we start middle School. What should Felix be doing on his own? Like on our next trip? On our. He's gonna have. We're gonna have that two week trip about a month before he starts middle school. What should be our goal for that trip?
- [43:30]
A
Well, I'll give you my answer, but before I do, the real answer is you should ask Felix. Because at the beginning of every school year, I would sit down with Benny and say, what are we doing with diabetes this year? And it kind of started as a joke in first grade, but we did it every year, even through the teen years. He was like, ugh, who cares? But it became a real bit of conversation and action. And I would say, because you guys have follow, you have DIY loop, brace yourself. Nicholas. I would say expand your time that you call him, ask him what he wants. And he may not want this, but have a conversation around the CGM to say, okay, if you're high, maybe I. Right now I'm calling you right away or I'm texting you right away. If you're above this number, I'm going to give you half an hour. If you're above this number, I'm going to give you an hour. If you're. You know what I mean? And change those as he gets older. Also, you know, you guys know this, but you already mentioned checking every 20 minutes on the plane. Insulin is slow, food is fast. If your kid is dosing himself six times during the school day, he's gonna be low on the bus coming home.
- [44:31]
B
Yeah.
- [44:31]
A
Now that's a pre CGM kind of thing that we veteran moms used to talk about, but it's still true. And the other advice I would say is, I can't say, don't worry about it too much. Cause that sounds silly, but looking back, Benny was super independent from the age of like 8 on, but not at home. When we were together, I did everything for him. You know, he would hold out his hand to do a finger stick while he was playing video games. I did all of his infusion set checks. I did all his Dexcom. The changes, everything. But at school, at sleepovers, I never went on a field trip. Like, he did all of that himself. And then when he was 13, boom. Immediately he got the Dexcom G6, which is the first time you could do it one handed because I don't think you guys did the G5. G5 took like two hands and you had to be like an octopus. But he could do that himself. And the first time he did it himself, he's like, I am done with you, mom. And looking back, I was so worried that I was babying him, but we weren't. We were just kind of going along until he was ready. And that's one thing I would say is just meet him where he needs to be for his independence and have conversations about it. And middle school. Be prepared for brain fog. You've already done it twice. You know, it's not the best, but you'll be.
- [45:36]
B
Their prefrontal cortex is not functioning.
- [45:39]
A
It's a lot of change, but I think giving them a little bit of rope, especially a kid who's responsible and wants to do well. Like, Benny never rebelled against diabetes. No, he just, like, couldn't get it together. He was like, I'm so mad at myself. And I have. You know, you have to be like, it's okay. You're.
- [45:54]
B
Well, yeah. And he's. He started, like, rage bolusing, too. And we're like, yo, yo, yo, yo, be cool. You can't do that.
- [45:59]
C
Well, that's the thing is that. That's so hard with. That can be hard with Loop is that it gives you the opportunity to remote bolas. But you really have to be careful.
- [46:06]
A
Yes.
- [46:06]
C
And what we've learned now is, like, when he first started with Loop, he didn't do anything. And we've really even cut the nurse out for the most part at school. If he needs a bolus, we do it remotely for the most part. Well, now it's been really. Only in the last six weeks or so, he started giving himself boluses.
- [46:21]
B
And we're like.
- [46:21]
C
And then we gotta be careful because we can't be doing the same thing remotely and thinking, oh, boy, we're gonna be stacking insulin in ways that are just. Are not healthy. So, yeah, that's a. The conversation that I've been meaning to have with him of, okay, let's talk about what you're gonna do and what we're gonna do. And if you don't want us to do the remote bolusing anymore, that's fine, but you're gonna have to be paying more attention than you typically do.
- [46:42]
A
I think it's really hard to have these conversations with preteens and young teenagers because we know they're not 100% ready, but we have to let them do it and kind of let them make some safe mistakes. That really helped me. That's how I parent. So, you know, I think you guys will be just fine. But you take. You know, you'll figure it out. You'll do what works. Then he'll be treating a low with some old candy he found in somebody's locker because he didn't have anything in his kit. It'll be great. It'll be great. Good, good times.
- [47:13]
C
Even with all our preparation, there are days when he gets off the bus and he has nothing. Yeah, like meeting him, you know.
- [47:19]
A
Oh yeah, 100%.
- [47:20]
B
Because you can't keep him on him all the time or he eats it. Yeah, that's the problem.
- [47:24]
A
And I would too.
- [47:25]
B
You got to get the most boring candy alive. Don't give them no nerd clusters. Those aren't going to wait until low, let me tell you.
- [47:32]
A
I love it. Well, I will definitely link up the ebook. Thank you so much for joining me. I think you guys are amazing. I love following on your trips and when you post all the pictures, it's just phenomenal. And Japan is on my bucket list for sure. So thank you for reminding me.
- [47:45]
B
Listen, we went thinking it's a bucket list, we'll go and we'll have done it. And then we went. We were like, oh no, we have to go back. It's incredible. Cannot recommend it highly enough.
- [47:56]
A
All right, we'll meet you there.
- [48:03]
B
Yeah.
- [48:04]
A
Japan, right? Japan and South Korea are my husband's top bucket list travel destinations. I don't know when we will get there, but that is on the list for sure. I'll link up Nicholas's guide in the show notes. It's very in depth. I think it's super helpful. It's got a really extensive packing list as well and you know, again, depending on your personality. I have a much shorter travel guide I put together a couple of years ago and that is in the resources section of Diabetes Connections. I hope you know we have a resources section with lots of free downloads. Travel guide with a packing list. You know, organize your diabetes supplies, Halloween stuff. Just a good source of common questions I have run into over the years and those are all free to download, so definitely check that out as well. Thanks to everybody who came out to Club 1921 last week in White Plains. These events are so much fun. It is a little different talking to the healthcare professionals and the patient leaders rather than, you know, mom's night out or my bigger community events. But you know what, it's all the same in that everybody just is such a great part of the conversation and wants to connect. We have two more of these Club 1921 events coming up in June, Boston and Chicago, and then a lot more to come this fall. So I hope to see you at one of our in person events this year. Thank you to my editor, John Bukettis from Audio Editing Solutions. Thank you so much for listening. I'm Stacey Sims. I'll see you back here soon. Until then, be safe on the road and be kind to yourself. Diabetes Connections is a production of Stacy Sims Media. All rights reserved.
- [49:44]
B
All wrongs avenged.