Magazine article The Exceptional Parent

Traveling to the Costello Syndrome Family Forum with a Special Needs Toddler

Magazine article The Exceptional Parent

Traveling to the Costello Syndrome Family Forum with a Special Needs Toddler

Article excerpt

Last summer, my family traveled from Austin, Texas to Orlando, Florida for the 8th International Costello Syndrome Family Forum. My son, Westin, has Costello syndrome and was two years old when he attended the conference. Costello syndrome (CS) is a rare genetic disorder that affects many parts of the body. People affected by CS often have heart issues, feeding difficulties, brain abnormalities, orthopedic issues, increased tumor risk, short stature, along with many other issues. Westin has a g-tube and used a gait trainer to help him walk. Despite all that, Westin is no stranger to traveling. He has already been on 35 flights! His first flight was when he was five months old to travel to the previous Costello syndrome conference. We have the travel bug in our family and my husband and I have accumulated over four million frequent flyer miles on American Airlines. I will be sharing a little bit about our journey to the Costello syndrome conference and give many travel tips.

Several days before we traveled, we prepared a list of items to pack and noted if the item goes in a checked bag or carry-on bag. We compiled a list of Westin's doctors and medicines to have handy in case of an emergency. We contacted the airline regarding Westin's gait trainer to make sure we could bring it to the gate. We also researched the airline and TSA policies on traveling with strollers, car seats, and liquids. We called the hotel to make sure our room would have a refrigerator in it for Westin's blenderized diet that we feed him through his feeding tube and we requested a pack-in-play for our room. We also compiled medical records to share with the researchers that were at the conference.

Below I have many travel tips which are especially tailored to young children and babies with special needs.


* Bring a doctor's note that outlines medical equipment, medicines, and any liquids necessary to travel with. Also note if a stroller is being used as a wheelchair (some airlines limit strollers to 20 pounds for gate check unless medically necessary).

* Consider mailing some bulky items (diapers, wipes, feeding supplies) ahead to your hotel.

* Bring disinfecting wipes to wipe down crib and other surfaces.

* Bring pack-in-play sheets.

* Pack all formula, medicines, and anything that cannot be exposed to extreme temperatures or are critical to survival in carry-on bags.

* Strollers, car seats, and diaper bags can be checked or carried on board in addition to the normal baggage limits.

* Put all liquids (including sunscreen) in Ziploc bags.

* Always bring a few extra days of food, medicines, diapers, etc.

* For blended diet through a g-tube, instead of bringing our Vitamix blender, we bring a Blender Bottle if we are in a hotel. Most timeshares provide blenders. We put dry ingredients in small Ziploc bags (spices, baby oatmeal, Miralax, etc. that are pre-measured out for each day). We also pack hemp milk (non-refrigerated), baby food, and some other ingredients so we don't have to buy as much at a grocery store. We pack measuring cups and spoons unless we are in a timeshare. Don't forget your recipe.

* Get refills of medicines that might run out while traveling. Pack emergency medicines like anti-nausea pills, antibiotics, EpiPens, glucose sticks, etc.

* Bring a set of extra clothes in carry-on for everyone.

* Order necessary supplies from DME Company in advance (pack an extra g-tube for example) and have a plan with them in case an item breaks while traveling (pump, suction machine, ventilator, etc.). Arrange for oxygen if needed. Do not forget to bring chargers (and backup batteries).

* Fully charge feeding pump and pack 60ml syringes in case feeding pump breaks.

* Pack the disabled placard if you have one.

* Bring a soft-sided cooler with ice packs for refrigerated items. …

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