Travel tips for kids with complex medical needs

Travel can be a positive way for kids to learn and explore, experience new things and of course, spend quality time with their loved ones.

For families with children who have special needs or medical complexities, planning a vacation may be more difficult. Brittany is mom to Brooke, a 12-year-old girl who sees a number of Phoenix Children’s specialists. Their family has learned how to prepare for a successful, safe trip while accommodating Brooke’s complex medical needs.

“We didn’t always travel; it took us years to feel comfortable with all of Brooke’s medical needs. I was really nervous and admittedly afraid to be brave,” said Brittany. “Thankfully, we have become confident in taking care of Brooke because of the valuable training by her medical team at Phoenix Children’s.”

Brittany is also a member of the Patient Family Advisory Council for Barrow Neurological Institute at Phoenix Children’s. Here, she is joined by Dr. Wendy Bernatavicius, division chief of primary, complex care and adolescent medicine, to share tips for traveling with a child with complex medical needs. Keep in mind that each family’s prep may look a bit different depending on need, mode of transportation and destination.

1. Let your child’s medical team know

Tell your child’s pediatrician and other members of their medical team your plans for travel. See if they have additional suggestions for preparations, and ensure they know where you are going, and for how long.

“Phoenix Children’s supports safe trips as family time contributes to quality of life,” says Dr. Bernatavicius. “Share your plans with your child’s medical team first to ensure you are travelling at a medically-appropriate time.”

2. Know the locations and contacts of nearby children’s hospitals, medical centers and pharmacies

If you are driving to your destination like Brooke’s family usually does, scope out the children’s hospitals and medical centers along the way. Save their phone numbers and addresses in your phone. Know the route from wherever you are staying to the closest hospital.

Be aware of pharmacies nearby in case you need an urgent medication refill.

If needed, call your insurance company ahead of time to confirm the facilities you would visit in case of an emergency while traveling.

Let your child’s medical team know what facilities you will be closest to.

3. Travel with a document that lists your child’s needs

Travel with a letter from your pediatrician or a document that outlines the following information:

• Medical history
• Needed medications
• Medication allergies
• Necessary medical supplies/equipment
• Contact information for pediatrician/medical team
• Other information unique to your child’s needs

4. Get accessible accommodations

When booking a place to stay, get an accessible room with a mini fridge. Accessible rooms allow more space for medical equipment, and the fridge provides a cool space to store medications.

Check the accessibility information of your travel destination. Brittany referred to national parks’ websites while planning their family trip so they could plan activities accordingly.

Sometimes, for Brooke’s family, that means one parent could take Brooke’s sisters to do something that may not be accessible for Brooke – but they prefer to find things they can do together as a family.

It can also be helpful to stay in a hotel with laundry access if your child has complex bathroom needs.

5. Practice social stories

Kids with special needs or who are medically complex may get overwhelmed in new environments. Practicing social stories can reduce stress and prepare them for the social situations they may encounter while traveling.

Brooke is non-verbal, and her family uses simple picture stories to explain what they plan to do that day.

6. Keep to the same routine as much as possible

Changes in routine can be stressful for anyone, not just a child with complex medical needs. Sticking to the same schedule as much as possible can help travel go smoothly. If possible, keep times for eating and sleeping (including naps) consistent.

Brittany pads their family’s travel schedule with rest days and includes some plans that are more low-key. For them, this helps everyone stay relaxed and closer to their typical routine.

7. Pack extra everything

Write out organized lists before packing. Brittany makes lists for prescriptions Brooke needs, special foods she eats, charging cords for all equipment, road trip entertainment for the kids, and Brooke’s comfort items.

Writing these lists eases the packing and preparation portion of traveling. Brittany also suggests beginning the packing process early.

Brittany packs three bags for Brooke alone, making sure they have everything she may need. She brings travel bed rails to make certain the hotel bed is safe, and water-resistant seat protectors for the car.

For Brooke, it’s also important that they bring a first aid kit that includes emergency seizure medications and oxygen.

As far as the extra items, Brittany packs extra towels, clothes, medication refills and diapers. They also bring a yoga mat so that Brooke can be sanitarily changed while traveling in the car, as not all places have adult-sized changing stations.

8. Bring comfort items

Pack items that you know will help your child stay calm and happy. Brittany packs an iPad, weighted sensory blanket and noise-blocking headphones for Brooke.

Luckily, Brooke loves being in the car with her family, but they still bring lots of entertainment for the road like DVDs, games, music and coloring books – plus plenty of snacks. They also adapted their 12-passenger van by taking out the two back rows, leaving extra space for their three kids and belongings.

“I don’t want other families to be afraid,” said Brittany. “I’m grateful we finally took the leap of faith and did it. Brooke requires the most, but is the happiest traveler of all my kids.”

Brooke and her family just returned from a road trip through Colorado, Wyoming, Utah and South Dakota – and Brittany said Brooke was a champ!

“Here’s to more road trips and memories!” said Brittany.

For more tips on traveling with a child who is medically complex, visit complexchild.org.