Traveling Abroad with PWS

contributed by Anne Fricke

When Language Is an Obstacle

The first time we traveled outside the US with Freya, I packed, as the saying goes, “everything but the kitchen sink.” Along with our ergo baby carrier and a cheap stroller we bought for the occasion, we traveled with our cooler for the growth hormone and copies of the prescription, a nebulizer in case Freya got a cough, the pulse oximeter I had to buy because I refused the CPAP machine (a story for another day), a collection of kid medicines and herbal remedies, and, perhaps most importantly, the PWS medical alerts booklet.

As a family, we were fairly well-traveled, but traveling outside the country with a child with unique needs, many new to me, was a bit terrifying. Spoiler alert, while this may have been the first time we traveled with Freya outside the country, it was certainly not the last.

On this trip, we were heading to the west coast of Mexico to a little beach town off the tourist-beaten path north of Puerto Vallarta. Along with another family, we rented a house on the beach with a pool and lots of tile. I wasn’t sure which one caused me more anxiety. Freya was 2 and a half and not yet a reliable walker, unlike her little sister, who had just turned one. Thankfully, Freya still took a lot of naps so we could have a momentary reprieve from the fear of her falling on the tile or into the pool.

Unexpectedly, it was her little sister who sent us to the emergency room first with a fever, lethargy, and shallow breathing. Thankfully, she was fine, but we were grateful to learn that the local hospital employed a woman from TX who was a great translator for our needs. Speaking Spanish for food, directions, or chatting on the street is one thing, but speaking Spanish for medical needs is a whole different experience that none of us were well-versed in.

A few days later, Freya began to vomit and have diarrhea, two things in the PWS world that are huge “uh-oh” s. We grabbed the medical alert book and another taxi, and off we went. To our dismay, our lovely friend from TX was not there, and fear muddled the Spanish on my tongue even more. In my nervousness I pulled out the medical alert book.

The doctor’s eyes lit up as he reached for it. He was able to explain that while he did not speak or understand English well, he was well-practiced in reading English, especially regarding medical language! I showed him the part of the book that talked about my concerns for Freya. Right away, he ordered an x-ray, and I felt a huge relief knowing that we now understood each other.

Everything turned out to be okay. Freya must have just had an issue adjusting to the food, and her little sister got better. Freya got to practice walking on warm sand, plopping down to experience the feel of water rushing up around her, and saying “hola” to every person she met.

We’ve adjusted our travel protocol since then. No more overweight suitcases that cost us extra for the plane. No need for superfluous medical supplies or things of that nature. Freya takes her own suitcase and fits what she can. I still carry the growth hormone cooler, though now I carry a malleable canvas cooler instead of the plastic encumbrance that takes up all the foot room on an airplane. We’ve traveled quite a bit with Freya, a few more international trips, and several cross-country excursions. I was terrified on that first trip. And rightly so, everything about PWS was terrifying back then. But I’m twelve years in, far more experienced, and I would take Freya anywhere I would take my other children.

Here are some travel tips I’ve picked up along the way. I hope these help with any concerns or trepidations about traveling with your child to the 2025 United in Hope International PWS Conference in Phoenix, AZ.

Travel Tips:

Refrigerated Medicine

Plan to stay at a hotel or rental house where you can access a refrigerator to store your medicine. Make use of the medical-grade ice packs that come with your refrigerated medicine. They are great for long hours of travel. For more tips and tricks to travel abroad with refrigerated medicine, read our article “How To Travel with Refrigerated Medicine.”

Snacks

It’s good to keep non-perishable, PWS-friendly snacks in your bag for when things get delayed, or the options are simply too unhealthy.

Activities

This one applies to children of all types. Bring easy, soothing activities for lengthy travel times. When Freya was younger, I always traveled with yarn, as one of her favorite activities was finger knitting. Now she knits with needles, but we leave those at home just in case they were to get confiscated at TSA (It happened to a friend of mine. Who knew knitting needles could be so dangerous.) Freya always travels with paper, coloring book, and crayons, and we’ve since added a deck of cards for that Solitaire moment.

Surprises

When my oldest was three, we traveled across the country from San Francisco to Chicago via train. I purchased small, interesting items from the dollar store and wrapped them. During the 3 days of travel, I pulled out a small, wrapped gift when I saw the boredom about to spin into whining. She would find entertainment in the silly putty, mini sticker book, or whatever the item was. Part of the excitement was the novelty of unwrapping and having something totally new to her.

Comfort Item

Perhaps your child has a stuffed animal or blanket that brings them comfort. My girls all traveled with their teddy bears when they were little. It’s hard to travel with a giant comforter, but a throw blanket can be rolled up tight. Perhaps your loved one could pick out a particular travel comfort item, a sweatshirt or stuffed animal, that they reserve specifically for travel.

Important Information

If it wasn’t clear from my story, absolutely travel with important documents and information that pertain to your loved one’s care. Thankfully, so much is online now and can be found via the internet, but sometimes it really comes in handy to have a physical document to hand to someone.

Create Your Own

This is, of course, not an exhaustive list of tips for traveling with our loved ones. But they show how little acts can make a big difference in the comfort and success of travel. Try different things. Talk to your loved one and get ideas from them. Get everyone involved and excited for traveling and enjoy adventures together.

Download PWSA | USA’s Medical Alerts Booklet

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