Tips for Families Traveling With a Tube-Fed Child

Note: I may earn money or products from the companies, products, or links mentioned in this post.

Most families like to travel. They want to see the world, visit family, and go on vacation. But what if you’re a special needs family? What if you have a tube-fed child? It may be more difficult to travel due to how expensive it is and because of all the medical equipment you would have to travel with.

For our family, we have a tube-fed child and we are a military family. It’s inevitable that we will travel a lot between the many moves, the living away from and traveling to see family, and anything else in-between!

Our family has also had to travel a lot for appointments whether in-state but far away, our out-of-state to see specialists we could not find elsewhere. I have traveled many times both by plane and by car across the country. Here are my tips on how to make your trip go smoother the next time you travel with your tube-dependent child and all their supplies!

Flying With Your Tube-Fed Child:

1. Call the Airline Before Your Trip.
Before you get ready to fly with your child who is on a feeding tube, call the airline you are flying with and ask them about what to expect. Ask them about their policies on traveling with a child with disabilities or medical needs and the kind of allowances you will receive.

You can also contact TSA ahead of time to let them know you are coming and what you will be traveling with.

2. Pack a Separate Piece of Luggage with Medical Supplies
Many airlines will let you check a piece of luggage that has only medical supplies in it for free. We traveled with a small suitcase full of my daughter’s extra feeding tube supplies and we were able to check it for free on top of checking our other suitcases for clothing and toiletries.

You can also show a doctor’s note or travel orders from a physician showing why you are needing to travel and why you need the extra equipment.

3. Always Pack More Than You Need.
When you are flying with a tube-fed child, you always want to pack MORE. Even if it’s only a short trip, you never know what you could run out of or what accidents might happen. Don’t forget to plan for flight delays or cancellations too!

Here’s a list of what to pack in your child’s medical suitcase:

• IV pole (to hang your child’s feeding pump on).
• Plenty of 60ml and 10ml syringes.
• Several feeding tube extensions.
• Plenty of tube-feeding bags.
• Gauze.
• Medical tape (if your child needs it).
• An extra G/GJ button (just in case).
• Backpack for the feeding pump and formula bag (if your child is old enough to wear one).
• Extra formula.
• Measuring cups or bottles for measuring formula.
• Water bottles for flushing your child’s tube.
• Any other supplies your child might need.

Here’s what to pack in your carry-on:

• Any creams or medications your child may be needing.
• Several 60 ml and 10 ml syringes.
• 2-3 feeding bags.
• 1 extension.
• Several pieces of gauze.
• Medical tape (if needed).
• Extra tube-feeding formula.
• Cooler to keep the formula cold (if needed).
• Measuring cups or bottle for measuring formula.
• Water bottles for flushing your child’s tube.

4. How to Keep Your Child’s Feeding Tube Formula Cold.
We ran into the problem of keeping my daughter’s tube-feeding formula cold on a plane a few years ago. My daughter was on a 24/7 feeding pump schedule and we had to make sure we had enough formula for the entire trip. The problem was, like many tube feeding formulas, once it was opened it needed to be kept cold until the remainder could be used.

Our solution was to find something small and easy that could keep them cold. We found a freezable lunch bag that you put in the freezer until ready to use. When ready, it will keep whatever you put in it cold, for up to 12 hours. This helped solve the problem of her formula going bad or being wasted.

5. What to Expect at Airport Security.
Every airport will vary, but we all know that going through security can be tough and take a very long time. I suggest leaving even earlier than you would if you didn’t have a tube-fed child.

We learned this the hard way when traveling back home one time, and we almost missed our flight due to security taking longer than we anticipated.

Because every airport will be different, I can’t tell you exactly what to expect, but I can tell you what we experienced. When we went through security in Atlanta Airport, we were able to put most of her supplies through on the conveyer belt.

For the actual pump, they told us she could walk through with it on and me holding her. They did have to test the feeding bag of formula and any other open cases of formula, which takes a bit longer.

When we were traveling from Logan Airport in Boston, things were a bit different. They had us stop the feeding pump and took everything to a separate place where they checked everything separately, scanned and patted down both me and my daughter, and made sure we weren’t carrying a bomb. They were very serious about this and it took almost an hour to get through even with hospital and military orders being shown to the TSA agents.

Traveling by Car With a Tube-Fed Child:

1. Pack a Separate Piece of Luggage with Medical Supplies.
When you’re driving a long way with your child who is on a feeding tube, you are going to want to be prepared. Pack a separate piece of luggage with extra feeding tube supplies and make sure you load it in the car last so you can easily get to it if needed. Make sure the IV pole is also easily accessible for when you make stops along the way.

2. Pack More Than You Need.
Make sure to pack and plan for the unknown. You never know if there may be extra stops or emergencies along the way. The list of what to pack in your child’s medical suitcase is going to be the same as above. Just make sure to pack more than enough for the entire trip.

Since you will be driving, print out “In Case of Emergency” paperwork to put in your cars or to have in a binder in the car. On the paperwork include emergency contacts, pertinent medical information, and any diagnoses that a medical team or family member may need to know about. You may even want to include the name of your child’s tube-feeding formula, the current volume and rate of the pump, their medications, and times they should be given.

3. Call Your Child’s DME Before You Leave.
Whether you are moving or traveling across the country, remember to call your child’s DME (Durable Medical Equipment Company) before you leave. Make sure all your DME equipment is working and in good shape. Tell them you are traveling or will be relocating so they can make sure you have enough supplies and formula to get you to your destination.

4. Bring a Cooler to Keep Formula Cold.
When traveling by car, bring a cooler to keep in the backseat to keep your child’s tube-feeding formula cold. During stops bring the cooler and the formula into the hotel or home to keep cool.

As a parent to a special needs child, traveling can be hard. Being prepared, organized, and having the right supplies and tools will help your travel time go smoothly. Good luck!

What aboutraveledve you ever travelled with your tube-fed child? What was your experience? Do you prefer to travel by plane or car?