There was a time when we thought the refrigeration needs of Freya’s growth hormone alone would hinder our travel and keep us home more than we desired. We love our home and enjoy being here, but traveling is an important aspect of life for my family. We have had to make some adjustments to our travel styles since Freya was born. No more buying last-minute plane tickets to Europe or Mexico and “figuring it out” when we get there. To be fair, it’s mostly the economy that doesn’t support those choices anymore, but having to consider the nuances of PWS, like refrigerated medicine and dietary schedules, has changed some things. Still, we have found a way. Oaxaca, Baja, Guatemala, and several cross-country trips into life with PWS, and we’ve learned a few tricks to keep on traveling. Here is how we handle traveling with growth hormone. 

This may be an obvious one, though it wasn’t for us in the beginning. Invest in a canvas cooler bag. The one we use now came with Freya’s first order of Omnitrope, so it cost us nothing. We only had a hard plastic cooler the first few times we traveled with growth hormone. It was big enough to fit a six-pack and proved difficult for plane travel. 

The medical-grade ice packs that refrigerated medicines are shipped with are perfect for travel. When you get to your destination, if there is a fridge and freezer, be sure to put those ice packs in the freezer so they are cold and ready when you hit the road again. 

If staying at a hotel, request a room with a refrigerator. If there is no freezer in the mini fridge to store the ice packs, the front desk might be inclined to store them in a freezer in the kitchen once they know the situation. If you get a room that does not have a fridge, you still have options. Ice machines are a staple at most hotels and motels. Fill up a plastic bag (usually, they leave one with the ice bucket) with ice and put it in the cooler. You’ll need to update the ice periodically.

We have traveled to places with no refrigerator in the room and certainly no ice machine. These places were mainly in Latin America. They did, however, have some communal or personal fridges in which they allowed us to store Freya’s medicine. In every place we have had to do this, we had some connection via friends to the owners or managers, so we felt secure storing her medicine with them. You will have to evaluate each situation, but I have found that, in general, people are kind, helpful, and willing to assist a family with unique needs. 

Air BnB’s or VRBO’s are available around the world. This has made travel, especially with a loved one with PWS, a much easier option. Not only are you assured a refrigerator with which to store medication, but you also typically have access to a kitchen to make those PWS-friendly meals. How you secure that kitchen is another issue for a later date. 

Our longest camping trip with Freya to date is 5 days. It was a class trip, and I brought my own cooler to store her medicine. Due to its size, the travel canvas cooler wouldn’t work for this trip. So I brought the styrofoam cooler her medicine usually comes in and packed it with 4 medical-grade ice packs. I rotated the packs a few days in when the outer ones were finally melted, but the middle ones were frozen. On shorter trips, I have kept her medicine in the drink cooler (the one that usually retains the most ice), stowed in a plastic bag inside a secure Tupperware sitting on top to avoid the liquid of melted ice. 

Now, I have yet to attempt a 100-mile hike with Freya along the Appalachian Trail or a two-week canoe ride into the Amazon. If or when we do, I would make the probably controversial decision not to bring the growth hormone. The adventure and experience would be worth the slight lapse in treatment. Thankfully, we have had many adventures of various types in different places, and we have always found a way to store her medication properly. 

 

Traveling with someone who has the unique needs of PWS can seem daunting and, at times, too challenging. It doesn’t have to be, though. Many families travel with their loved ones with PWS and have amazing adventures. Hopefully, if you so desire, you can find in their stories not only the inspiration to travel but also the confidence and security as well.