I strapped my newborn to my chest in her sling, and pushed my double stroller through the airport. Two car seats, a diaper bag, an activity bag, and one carry-on suitcase full of diabetes supplies left no room for my baby in her stroller seat. My husband had gone before us to begin settling our new life in Arizona, and the day had arrived that we would fly across country to join him. Our two year old had been diagnosed with Type 1 Diabetes about six months prior, and our baby was about six weeks old.
Seven years later, we’ve traveled quite a bit, including Las Vegas, Disneyland, Montana, Seattle, and Florida. Traveling with children is an experience, but traveling with children and diabetes is nothing less than an adventure. I’ve learned a few things along the way and wanted to share them with you here…
First of all, you should know that I had no idea how desolate some parts of these United States can be. Call me sheltered, but I seriously did not realize that driving five hours between two major US cities would be so lonely. And winding. And absent of shoulders. And full of construction projects. In other words, I had no idea that we would start driving and find ourselves unable to stop for hours on end.
We were a little family of four going to visit some relatives who were stationed at Nellis Air Force Base. At the time, we drove a small SUV that really wasn’t any larger than a compact car. At some point, I looked back to check on the girls, and could tell something was amiss with my daughter’s blood sugar. Strapped in her car seat, she looked pale and confused…staring at me, but not responding when I called her name.
Aaaaannnnnnd there was nowhere to pull over. NO.WHERE.
I took off my seatbelt, and stretched as far as I could, but wasn’t able to reach her. Then I pushed myself over the center console, and awkwardly shoved my frame between both car seats, the floorboards, and the front seats while poking her toe to test her blood sugar. Somehow I managed to shove a juice straw into her mouth, and she perked up pretty quickly. After that experience, I refused to drive home in the same vehicle, because I felt I needed easier access to help her when/if necessary. My awesome husband knew I meant business, and drove us straight to a Vegas car lot, where we traded in the SUV, and bought the minivan I still drive today.
MORAL OF THE STORY: Check your routes, and know ahead of time where/when you’ll be able to stop. Also, take a few minutes to check with the state highway administrations you’ll be traveling through for road closures and construction projects. Map out a route that allows you to stop about every 2-3 hours to evaluate blood sugars, and intervene as needed – especially if your child is very young, or otherwise needs assistance with his/her diabetes care.
We’ve made this road trip twice (in our awesome minivan!), and both times the car ride there and back went pretty smooth, because we made sure to stop for bathroom breaks, sugar checks, and snacks frequently.
There are actually several resources available to help you plan a Disney trip with Type 1 Diabetes. Of course I didn’t know about any of them when we went, which is why I’m mentioning them to you now. We didn’t realize how often we’d find ourselves treating low blood sugars while inside the parks. If I didn’t know better, I might have jumped to the conclusion that Disneyland was a cure for my daughter’s diabetes. We ran out of our fast acting glucose pretty quickly, and found ourselves at the First Aid stations in search of juice or anything else they might have on hand.
One other thing about Disney – if you’re eating a gluten-free diet, this is an awesome place to plan your vacation. In fact, I actually do consider it to be THE happiest gluten-free place on earth! Their chefs, staff, and restaurants are incredibly accommodating and well trained in preventing cross contamination; and the menus offer quite a bit of variety.
MORAL OF THE STORY: When you think you’ve packed all the sources of fast acting glucose that you’ll need, double it. Also, consider thinking outside the juice box, and try packing some different forms of glucose. From tabs to gels to powders, there are several options available that make glucose portable and easy to stash. If you have celiac, be sure to add a couple days at Disney to your bucket list.
Alright, folks. These were some SERIOUS road trips, made up of two-and-a-half days of driving each way. That adds up to FIVE days of just sitting in a car. Unlike our experiences with shorter road trips, we were challenged with managing high blood sugars on these babies. Apparently sitting still for almost three days can do that do a person. The decrease in activity level made a huge impact on blood sugars.
Admittedly, I was very thankful for a separate CGM device and her insulin pump remote. My husband was up front, navigating the highway while I was using diabetes technology to navigate blood sugars. I had her test about every 2-3 hours to make sure the graph was accurate, and found that I had to correct her pretty frequently. Ultimately, we needed a temp basal increase to compensate for the decreased activity level, and it seemed there was quite a bit of trial and error to get it right. By the time I felt confident that we had turned the situation around, we were pretty much home.
MORAL OF THE STORY: If you have access to technology tools, use them in full force. Pack a little cooler full of low carb snacks (cheese sticks, lunch meat, veggies, nuts) and bring LOTS of water. Keep in mind that water + high blood sugars = frequent bathroom breaks. You may start to feel like diabetes is sabotaging your trip, but try your best to take a few deep breaths and stay calm!
Last summer, our family went to the 2012 Children With Diabetes Friends For Life Conference. It was the first time we would fly with an insulin pump and deal with a significant time change. Airport security wasn’t much of an issue for her insulin pump, but getting her remote meter to the other side without going through any x-ray machines did pose more of a challenge than I expected. In the end, they decided to let me carry it through the metal detector and swab it for traces of explosives before letting us go.
As for the time change, it definitely threw us off. We were eating at different times than we were used to, and her pump settings didn’t coincide. I thought about changing the time, but then decided to make things harder on myself by setting up an alternate pattern and attempting to readjust everything to fit instead. I never really figured it out. The entire week of numbers sort of faded to the background, and has become a hazy clouded memory at this point.
Note to self: NEXT TIME JUST CHANGE THE TIME!
MORAL OF THE STORY: Check out this document from the ADA for information and updates regarding travel with diabetes. You’ll want to check with your specific airline to make sure you understand your bag limits and associated fees. We needed a carry-on strictly for diabetes supplies, because we didn’t want to risk losing them with the luggage. Be sure to pack plenty of snacks and grab a water bottle before boarding.
Also, if you’re dealing with a time change, and an insulin pump, consider changing the pump’s time once you arrive to the new time zone. (Trust me on this.)
Don’t let your child’s diabetes stop you from getting out there to make some memories. Pack some glucose, grab a suitcase, and go see the world!
By Wendy Rose