Flying with Diabetes: Tips for a Smoother Journey

Megan: 00:00

Flying with type one diabetes? It can be a little nerve wracking. I get it. We just flew for the first time after my son's diagnosis, and I remember the nerves I felt before the trip. Today, I'm going to share everything I learned, the good, the bad, and the indispensable tips for flying with diabetes so your next airport adventure can glide as smooth as a plane on a clear day.

In this episode, I'll discuss preparing to fly with type one diabetes, packing tips, getting through airport security strategies for managing diabetes in flight, and diabetes management while traveling. Whether you're navigating this for the first time or looking to refine your travel routine, this episode is your boarding pass to a less turbulent journey.

Welcome to Maybe This Will Be the Cure, a podcast where the wisdom of a healing journey meets the warmth of shared experiences. Join as we explore the topics of healing, living with chronic conditions, chronic pain, neurodiversity, mental health, and parenting kids with disabilities. I'm your host, Megan.

When you're newly diagnosed with type one diabetes or a parent of a newly diagnosed kiddo, all the firsts can be so overwhelming. The first holiday trying to figure out how many carbs are in Grandma's apple pie. The first soccer game trying to figure out how to avoid a low. The first beach day trying to keep blood sugar steady and insulin cool in the sun.

My son was diagnosed with type one diabetes almost two years ago, and we've navigated lots of firsts since then. But this was the first time we would be flying as a family after his diagnosis, and I was honestly so nervous. As anxious girlie, that loves to be overprepared, before our trip, I dedicated countless hours to reading blog posts and articles, combing through diabetic Facebook groups, reading others' experiences, and listening to podcasts about traveling with diabetes. All with the hope that all this preparation would help the flight and trip go as smoothly as possible for us. And it did help a lot, but we still had a few hiccups that we learned from.

Today, I'm sharing all about it. In this podcast episode, I put together everything I learned from my research that was useful, along with what we learned from our own personal experiences. It's basically the resource I wish I had when preparing to fly and travel with my son, who has type one diabetes. Let's dive in.

The first phase of our adventure began several months before the trip, where I prepared the best I could for the flight. So, like I mentioned, I started my preparation with research. I read lots of blog posts, articles from pump and CGM manufacturers, I listened to podcast episodes and combed through diabetic Facebook groups to read about others' experiences. So hopefully this episode saves you some time on researching. But if you wear a CGM or pump, since they're all a little different, I recommend reading information directly from the CGM and pump companies that you use for specific info on your devices. I also recommend talking with your endo about it. Also, there are a couple helpful episodes from the Juice Box podcast where a diabetes educator talks about traveling with diabetes that I'll link in the show notes for you to check out. Also, I'm going to share a link to the Juice Box podcast Facebook group because I think it's such a helpful resource and not just for traveling.

After I did a bunch of research, I contacted our endo to see if they had any specific instructions for us and to get a letter to show TSA if we needed it. On the letter, it lists the supplies my son needs to be able to travel with and states that his CGM and pump cannot go through the scanners. Now, none of the TSA agents actually read the letter, but I had it right there on top for them to read if needed as we went through security.

Now, this next step probably isn't necessary for everyone, but it was super helpful for us since not only are we dealing with diabetes supplies, but both my kids are also autistic and can have a hard time following instructions. So I just wanted to streamline things as much as possible with security. So I got TSA pre check.

With TSA pre check, you get to go through a separate TSA pre check line, which is generally faster than the usual security line. You don't have to take off your shoes, light jacket or belt when going through security. You can just leave them on. You can leave your laptop in your bag and you can leave your small liquids in your bag.

It costs like $80 and lasts for, I think, five years. And if you have TSA precheck, kids under 17 can go through the TSA precheck line with you without paying extra. So we decided that only I would get TSA precheck. Paying the cost for both my husband and myself didn't seem necessary, but we figured it was worth it for at least one of us to have it. That way the boys could avoid long lines and the hassle of removing their shoes and jackets or unpacking their laptops and iPads. We felt like it would help them get through security a little easier.

To get TSA pre-check was pretty easy. Basically I filled out a form online, then I scheduled an appointment at this kiosk in Staples to get fingerprinted and show my ID. I think I had to have two forms of ID or maybe I brought my birth certificate. But anyways, they tell you what you need to bring. After you do that, then you wait for them to approve your application and give you your known traveler number. This can take a while. I only had to wait a few days to get mine, but they warn you that some applications can take up to 60 days, so this is something you definitely want to do well in advance. And personally, I started the process a couple of months in advance.

So eventually, if you're approved, they'll send you your known traveler number. Then when you're buying your flight through an airline, there's a spot to add that number so it gets printed on your boarding pass. We had already booked our flights when I got my number, but I was able to add it later. We booked through Allegiant Airlines and they have a place to manage your upcoming trip. And there was a spot for me to add it there. And then when we printed our boarding passes, mine was marked with TSA pre-check.

Now, this is my first time using TSA pre-check to fly, so I don't know if this is how it's done at all airports, but basically when we got to security, since I had TSA pre-check on my boarding pass, they handed me and my boys these laminated cards to hand to the TSA agents that say that we have TSA pre check so that the agents know that we don't have to remove our shoes or take stuff out of our bags. And we flew out of a small airport both ways. So the regular security line was just as short as the TSA pre-check line, but it was still worth it for us not to have to take things out of our bags or remove our shoes and jackets. Since we were already dealing with diabetes supplies and him not being able to go through the scanner, it just streamlined things a bit.

After getting TSA precheck to help ensure a smoother security process, I took another step to make our airport experience more comfortable, especially for my son. And we got him a hidden disability lanyard. It's green with sunflowers on it, and we added a card that says “I'm autistic with type one diabetes” to discreetly inform airport staff of his disability, aiming to foster understanding and support throughout the airport and on the flight. Now, the sunflower hidden disabilities lanyard was founded in the UK, I think, so it might not be as well known here in the US, but some airports and airlines are starting to recognize it. And some people with diabetes might not need something like this. But since my son is also autistic and has communication differences on top of a medical condition, I figured this visual alert might be helpful for us. And I think it was actually comforting for him too, to know that other people would be alerted of his disability visually so that they would hopefully be a little kinder and more understanding as we got through the airport and security and on the flight. Now, of course I wish that kindness and understanding was just the default, but I know that in a fast paced place where safety is a top priority, these visual cues might be helpful.

To further smooth our journey through security, we sought the assistance of a TSA cares passenger support specialist. And this requires at least 72 hours notice, though I'd suggest reaching out even earlier than that if you can. For some reason, I can't remember why the call in option wasn't working for me, but I managed to submit a request form online detailing my kids disabilities and the potential impact on their airport security experience. Ideally, apparently some airports reach out beforehand to arrange everything, but other than an email with some tips about traveling with diabetes and autism, we didn't get a follow up and apparently no specialists were available to assist us at either airport because no one met us at security to help. Maybe it's because they were both small airports, I don't know, but I've heard others have positive experiences with it. So even though it didn't do anything for us this time around, I think it's still worth a shot and one that I plan to try again the next time we fly.

Even with all this preparation, we knew that navigating airport security was particularly daunting for my son, given his autism and diabetes. To ease his nerves, we took proactive steps to prepare him for what lay ahead. I created a PowerPoint. Do people even call it that anymore? I don't know. Anyways, it was filled with pictures detailing every step of the journey from our departure to the airport, through bag check in, security screening, the flight itself, and finally to baggage claim. We reviewed this visual guide with him multiple times before our trip, giving him a chance to absorb and process the information. As the trip approached and he began to digest the information, he expressed his worries and asked questions, giving us the opportunity to address his concerns and clarify any confusion, helping to soothe his anxiety and build his confidence about the process. And spoiler alert, it paid off. He did a great job and was so proud of himself afterwards.

Okay, now that we talked about the things I did to prepare for the trip in advance, I want to get into talking about packing tips for flying with type one diabetes. The most important tip is to pack extra diabetes supplies. Obviously, you want to make sure that you have enough supplies for the entire time you'll be traveling, but you also want to have backups for everything because you know diabetes is going to diabetes sometimes, and it's just better to be prepared. What if your insulin goes bad? What if your CGM stops working? What if you have a pump error and go through more pods than you were supposed to? Seriously, just bring backups of everything.

Though I will say if you ever find yourself in a pickle, I'd try reaching out in a local diabetes Facebook group or the Juice Box Podcast Facebook group. I've seen others do this when they're in a bind, and in my experience, the diabetes community looks out for each other and tries to help out when they can. I remember in one of the groups I was in, someone was in town for work and forgot his long acting insulin, and I happened to have some extra long acting insulin on hand that we weren't using and that was going to expire soon anyways, so I offered it to him. So be prepared the best you can. But if something happens and you're in a bind, reach out to the community for help.

Now, how do you keep that backup insulin cold? So the insulin vial that we're currently using can stay at room temperature, but the backup insulin needs to be refrigerated. So to keep it cold during the flight, I put the backup insulin in a large Yeti water bottle with small ice packs. For the ice packs, I got those large, soft grid ones that kind of look like ice cubes. I'll try to link them in the show notes, and I cut them into strips and just used a couple strips.

Some people love using a frio. I think it's called Frio. I don't know, I think, Frio, to keep their insulin cool while traveling. It's very compact, and it's filled with these, like, little pellets. You soak it in water, and it puffs up and keeps insulin cold. It's not as cold as a fridge, but neither is the Yeti. The Frio that I have only holds two pens, so I brought the Yeti since it's big enough to hold multiple vials and pens, but you can get Frios in a bunch of different sizes.

The next important tip is to make sure all your diabetes supplies are packed in your personal item or carry on. It's crucial to carry all your diabetes supplies with you on the plane for several reasons. First, the cabin is a pressurized and temperature controlled environment, which helps ensure your insulin and devices remain effective, unlike the unpredictable conditions in the cargo area. Second, carrying your supplies with you eliminates the risk of being without them should your luggage go missing, so it's super important to make sure it's with you.

Now, I've heard of situations where the overhead compartments were full and people were required to check their carry ons instead. Now, I'm guessing in this situation you could just explain that your bag contains your essential medical supplies and they would probably make room, but I didn't want to risk it. So I made sure to pack all our diabetes supplies in our personal items that just go under our seat. We each just brought a backpack.

In my son's backpack, I put his compact diabetes kit that we bring everywhere. It has his glucose meter, a backup pod for his pump, insulin, keto test strips, glucagon, and some low snacks. All the other diabetes supplies went in my backpack.

Technically, from what I've read, you're allowed to bring an extra bag on the plane for medical supplies. But when I was reading the Facebook groups, people mentioned that the policy isn't consistently recognized by flight crews and may vary internationally. So I didn't want to risk it and just made sure to fit all his medical supplies in our backpacks. Also, in my research, I came across a discussion where someone faced challenges due to their bag not being distinctly marked as containing medical supplies. It seems that the issue arose from carrying an additional bag specifically for medical supplies in addition to their carry on and personal item. But the medical supply bag didn't have clear labeling. I didn't anticipate that this would be a problem for us since all our supplies fit in our backpacks and we didn't bring a separate bag for medical supplies or a carry-on. But as a precautionary measure, I got a tag that says “medical equipment, handle with care” and put it on the bag containing the medical supplies.

Another tip is to keep everything organized, especially for the things that are going through TSA. We brought four backpacks through security, one for each of us. In one backpack, I carefully packed all the diabetes supplies, keeping the needles secure in a hard container to prevent any accidents and the insulin in the Yeti water bottle to keep it cool. I made a point to keep most of the supplies in their original packaging whenever possible to aid the TSA process. I wanted the agents to be able to quickly verify that the items are untampered and legitimate.

I brought two juice boxes as a quick carb to treat lows on the plane or in the airport. They are over the TSA limit for liquids, but since they're for a medical issue, they are allowed now. I probably would have brought a couple more because he has ARFID which is avoidant restrictive food intake disorder and that particular juice is the only kind that he'll tolerate. So I wanted to have more on me in case our flight was delayed, but I had read somewhere that you can only bring two juice boxes through security and I'm not sure how true that is, but I just brought the two. I packed them in a ziploc bag and then placed it in the same bag along with all the other diabetes supplies. For high blood sugars, since hydration is super important, I packed an empty water bottle in his backpack that we filled at the airport after we got through security. All other small liquids I packed in a ziploc bag as well. Then in a lunchbox I put in a different backpack. I packed plenty of other low snacks, regular snacks and snacks with protein. And for quick access during security, we kept our electronics like laptops and iPads within easy reach.

After organizing all the diabetes supplies into a single backpack, I also included the letter from the endo and printed copies of the prescriptions in that same bag for easy reference and verification. If security had any issues with the supplies we brought, I wanted to have both right there with me to prove it was all legit. Also, if there were any problems on the trip and I needed to get more supplies, I wanted to have the prescriptions with me. I also had the digital versions on my phone.

To prepare for any potential emergencies. I made sure both boys wore their medical ID bracelets throughout the trip. And before we left for the airport, I fully charged all our electronic devices. I also packed a power bank as a precaution so that we could recharge my son's phone where he gets his blood sugar readings, or his insulin pump controller if necessary, particularly in case of flight delays when airport charging stations might be occupied. Fortunately, our flight was on time and we didn't need the power bank during our flight, but it proved invaluable for the rest of the trip, so I'm really glad I brought it.

Now we've got our packing strategy down, let's talk about making our way through airport security. With diabetes supplies in tow, TSA offers a downloadable card on their site that you can present to security personnel to discreetly indicate the need for certain accommodations due to a disability. We opted for a more direct approach. I just verbally informed the TSA agents that my son is wearing medical devices that cannot go through the scanners or x-ray and that they cannot be removed because they're inserted under the skin. I also told them that both boys are autistic and need to stay close to me at all times. I also mentioned my son's age preventing a pat down since he's under twelve. But for those preferring a less vocal method, using the TSA card might be a good strategy.

To ease the whole process, I had my son wear short sleeves and shorts and put his medical devices on his arm and leg, making them easily visible without having to remove clothing or show areas that might make him uncomfortable. With TSA pre-check, the process was streamlined even further. We got to keep our light jackets and shoes on, and our electronics and liquids got to stay in our backpacks as we sent them through the scanner.

But special considerations had to be made for his diabetes equipment. The extra CGM sensors and insulin pump pods cannot go through the scanner, and I was initially concerned that the juices, insulin and needles would be flagged. So I handed over the bag containing all diabetes related supplies for a hand inspection. Now this led to a very thorough inspection where they had to test every single item in that backpack with bomb detection strips, which was a lengthy ordeal and at one airport turned into kind of a fiasco. Talking with the TSA agent afterwards, I learned a more efficient method. Next time, I'll only pull out the devices that can't go through the scanner to be hand checked and send the rest through the scanner.

When it was time for us to go through the metal detectors, since my son's devices can't go through, they led him through a side gate next to the metal detector where he waited for me and my other son to go through, ensuring we all stayed together. And since he's under twelve, they didn't do a pat down. Instead they just wiped these test strip things on our hands to test for bomb residue.

It's worth mentioning some people wearing an insulin pump or CGM choose to go through the scanner or metal detector with their devices on and have no problem. My son uses a Dexcom CGM and on the Dexcom website, from what I can remember, it said that it could go through a metal detector, but it hasn't been tested in the full body scanners so they said to avoid those. It also said that the extra Dexcom supplies cannot go through the x-ray scanners, so they need to be hand checked instead. His pump, on the other hand, he wears an Omnipod Five, and apparently the pods and controller can safely go through both metal detectors, scanners, and x-ray scanners. But anecdotally, in the Facebook groups, some people mentioned their pod stopped working properly after going through the scanner, and putting on a new pod is still kind of an ordeal for us, and I didn't think he'd feel comfortable doing that at the airport or on the plane, so I wanted to avoid that if possible, and didn't want to risk it. Also, our doctor's note specifically says that none of his devices should go through any of the scanners or metal detectors, so we just followed that advice. But as he gets older, to avoid a pat down, which I know he'd be uncomfortable with, I'd probably just have him go through the metal detector with his devices on, but still avoid the full body scanner.

So now that we've made it through security, I wanted to talk strategies for managing diabetes in flight and when you land. So we selected our seats online long before the flight to ensure I'd be right next to the boys with my husband close by. Throughout the flight, I kept my son's small diabetes kit on my lap so I could easily check his blood sugar or give quick carbs if needed. We switched our phones to airplane mode as instructed. His Dexcom app on his phone, which provides blood sugar readings, continued to work without data or wifi. But my follow app, which gives me a copy of his readings on my phone, can't operate without data or wifi, so this meant I had to keep tabs on his blood sugar levels directly through his phone and pump controller, which wasn't a problem since I was sitting right next to him.

Based on what I learned from the Juice Box Podcast episodes I mentioned earlier, I knew that the air pressure changes could potentially disrupt insulin delivery and cause you to get either too much or not enough insulin. The advice for tube pumps was to disconnect during takeoff and landing and reconnect once you're in the air. But obviously that doesn't apply to an Omnipod, which is not a tubed pump and which can't be easily disconnected. But with an Omnipod, it is still possible for the air pressure changes to cause the pump to deliver an extra bolus of insulin. Now that's rare, but it does happen sometimes. So to prevent any lows from that, I deliberately ran his blood sugar a little higher than normal before the flight and made sure to bring plenty of low snacks, just in case. In my research before, while browsing through the Facebook groups, I noticed a discussion about people with little ones, babies and toddlers on the Omnipod who are quite sensitive to insulin. For them, even a minor bolus can have a significant impact. So to navigate this, some parents opt instead to take off the pod for the flight and switch to using an insulin pen. But for my son, who's older and bigger, not as sensitive to small boluses of insulin and absolutely hates shots, we decided to just keep his pod on and be prepared.

Also on the podcast they mentioned it's common for blood sugar levels to go high on the flight, and that was our experience as well. Towards the end of both flights, my son's blood sugar went too high. So the next time we fly, I'll adjust our strategy a bit to try to avoid that. Also, on the Juice Box Podcast they mentioned it's common to go low after the flight when you're walking through the airport and baggage claim. But since my son was so high at the end of the flight, that wasn't an issue for us. We were actually trying to bring his blood sugar back down.

Okay, while the focus of the episode is flying with diabetes, I also want to briefly touch on managing diabetes once you've reached your destination. We lucked out with an Airbnb that came with a full-sized fridge, so we stored the extra insulin in there. A little tip steer clear of hotel mini fridges for storing insulin. They're just not reliable enough. They're infamous for freezing things or not even being cold. I'm so grateful we had that full fridge. For the time we have stayed in a hotel with a mini fridge, we kept refilling the Yeti with ice regularly to keep the insulin cold instead of using the mini fridge. And if you can get a thermometer to keep with your insulin to monitor temperatures even better.

Another tip, be prepared to adjust your insulin dosage while on the trip. We've learned that my son doesn't eat as much while traveling, so we have to adjust his pump settings to prevent lows. I typically need to adjust his target blood sugar to be a little higher. And yeah, you can use activity mode, but I find that for him, that's often too high. So I just manually set his target a little bit higher and dial back a bit on the carb ratios.

But don't think we've got it all figured out. This was our first trip navigating diabetes in the cold. We live in a super warm climate, so this was a whole new experience for us. On this trip, we had flown to Utah for my sister's wedding, and of course, the wedding day was the coldest day, made worse by the biting wind. And that morning, my son was out in the cold for a while while we took pictures. After they got the group shot, I sent him to the car to warm up while we finished up. While he was waiting for me, he ate some snacks and when I returned to the car, I tried to guess the carb count, but I wasn't sure everything he ate while he was waiting for me. The combination of those uncovered carbs, the extreme cold, and the stress of the day caused a giant spike in his blood sugar. Between his high blood sugar and the aftermath of my other son's meltdown. If you know, you know, we ended up missing the wedding luncheon entirely, which was pretty disappointing, to be honest. It was a tough lesson in the delicate balance of managing diabetes against the backdrop of cold weather, autism, stress, and the chaos of a big event. But thankfully, we were able to bring his blood sugar back down safely and make it to the other events that day. And my sister looked so beautiful and happy.

For the most part, though, we managed okay in the cold. The weather stayed above freezing and we kept his pump pod protected under his clothes to prevent it from getting too cold. And the bag that stores the extra insulin we carry around for the day is insulated, giving us a layer of security against the chill.

As we wrap up today's episode, I want to leave you with this thought. The skies are wide open, even with type one diabetes as your constant travel companion. Today we've discussed preparation, packing, airport security, flying and settling in at your destination, all with diabetes in tow. It's my hope that my insights and stories have not only equipped you for smoother travels, but also instilled a sense of confidence and adventure. If there's one thing my family's experience has taught me, it's that diabetes doesn't have to clip your wings. Yes, it requires extra planning and a bit of learning on the fly, but the world is still yours to explore. So whether you're embarking on your first flight post diagnosis or you're a seasoned traveler looking to refine your routine, I hope this episode helps you soar. Here's to clear skies and smooth landings ahead. Safe travels, everyone, and thanks for letting me talk your ear off. Until next time.

Thanks for joining us today. Where dreams are nurtured, challenges are met with resilience, and every tiny step forward is a victory. Hit subscribe so you can easily find new episodes and join this community, because maybe this will be the cure. Close.

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