Parents offer 7 tips for navigating summer travel with pediatric feeding disorder

Summer travel with children is always an adventure. Having a child with pediatric feeding disorder (PFD) makes traveling for leisure or medical reasons more complicated. Planning and adhering to advice from seasoned families of children with PFD can help smooth out any bumps in the road.

Julie Boos of Kansas City navigated PFD with her son, Landon, for the first eight years of his life. Landon suffered from respiratory syncytial virus (RSV) at eight days old and underwent respiratory failure. That led to dysphagia and other eating and breathing issues.

The family’s lives revolved around physician and therapy visits. Just visiting the hospital took foresight, perfect timing and a car bottle warmer.

But, the Boos were determined to visit Disney World. They had planned to go when their older daughter was three, but they delayed the trip when Julie was pregnant and told not to travel. Their daughter was already spending most of her time outside school tagging along on medical visits, so the trip felt essential.

They delayed the adventure until Landon was just under three and still qualified for a free ticket. Julie planned every detail down to the minute. She requested a free refrigerator in the room, citing medical issues. When they arrived, she ordered groceries of Landon’s few foods to the room. And she studied the Disney restaurant menus to find those who might serve elbow pasta with butter. She mapped out the day so they’d end up at the right restaurants at the right time.

Anyone with a child who has PFD can relate to the challenges the Boos faced, along with the sheer will to overcome it to offer their kids an experience others consider “normal.”

Tips to ease traveling with PFD

We asked parents in our Feeding Matters Power of Two Facebook group for their tips on traveling with PFD. Whether it’s a day’s outing at the pool or a week at Disney, here are seven tips to make your family fun this summer easier.

Pack feeding essentials in your carry-on
If your child has a g-tube, specific bottles or any feeding supplies, bring them in your carry-on and have a backup. Andrea Wallace says she always travels with a backup button and extra supplies for her child’s feeding tube. That way, she’s always prepared when flying if the checked bags get lost or delayed.

Use a pump backpack
Having a pump backpack has been essential for Jackie Moore’s daughter. They use it for night feeds, and it also makes traveling easier. The bag has space for ice packs to keep the formula cold for multiple feedings. Moore suggests this Feeding tube backpack.

Try a travel booster diaper bag
With so many feeding supplies in addition to all the other kids’ travel needs, any way to consolidate travel gear makes trips easier. Moore swapped out her diaper bag with a travel booster that has storage in it. “My daughter is very particular about what she will sit in because of sensory issues, and she loves this booster. We downsized much of the stuff in her diaper bag and attached a cold lunch bag to the strap,” she says. This is the travel booster diaper bag Moore uses.

Get a travel mini fridge
An AC and DC-powered mini fridge for travel can be a lifesaver in the car, according to Devon Steele. It guarantees you can refrigerate formula and purees. It has dual power sources that can connect to your car or to a wall outlet. “Just make sure your hotels have elevators, or you have help getting it upstairs,” she says. View the BougeRV car fridge recommended by Steele.

Lean on food deliveries or family and friends
Most kids are tired and cranky when they finally arrive at a travel destination. Having food delivered beforehand or asking your hosts to get your child’s favorite foods can make for an easier start to the vacation, says Erin Avilez.

Document what works
With so much to plan, it’s easy to forget something on your next trip. Julie Boos recommends writing down what worked (and what didn’t). You can even have a travel bag prepared that you can use for every trip. This is especially helpful for those who have to travel for frequent medical trips.

Have a backup plan
Despite all her advanced planning, Julie Boos and family got stuck in the Atlanta airport when their plane was canceled. If you know your child won’t eat anything from a food court, make sure you have food prepared just in case you don’t make it home when you expect.

Happy travels!

Have tips of your own? We’d love to hear from you. Email programs@feedingmatters.org.