TRAVELING WITH PDCD
Live your best life with PDCD!
Traveling with PDCD is extra hard work, but it is not impossible! We’ve put together a list of everything we could think of as parents of children with PDCD to help you plan your next vacation or trip. You got this!
Before your trip
Alert your pediatrician or care team that you will be traveling, in the event a sickness or emergency arises they may be able to help you through it from afar.
If leaving the country or flying somewhere remote, tell your PDCD loved one’s metabolic geneticist or whichever clinician is the leader of their care team about your travel plans 1-2 months ahead of time. They can write you a travel letter stating the necessity of traveling with formula and meds, as well as alert the metabolics team in the location you will be traveling to. They can help you make a plan of where to go in an emergency.
If flying, contact TSA Cares before your flight to alert them if the passenger requires oxygen, wheelchair, feeding tube, service animal, etc.
If flying seems overwhelming, consider a day trip or a road trip.
Get a sunflower lanyard. The sunflower lanyard represents Hidden Disabilities. More and more major airports have adopted the sunflower lanyard. Wear it throughout the airport and on your flights.
For packing:
Make a thorough packing list. Don’t forget your own basic necessities! Often caregivers forget about their own needs when considering the needs of their medically complex loved ones.
Depending on where you’ll be staying, see if you can arrange to ship formula and supplies to your destination ahead of time. Some hotels and resorts will accommodate this.
Pack insulated bags with ice packs for day travel
If tube feeding, think about how many syringes and how much formula you go through a day. Pack clean syringes in a ziploc labeled clean syringes. Bring a ziploc prelabeled for dirty syringes. Bring extra ziplocs with extra sharpies to label. It can be helpful to have ziplocs pre-labeled for which meds are given at which times of the day.
Bring extra feeding bags, extensions, backup feeding tube, extra formula, a food scale, a pitcher to mix formula in the morning, as well as a blender bottle to transport formula throughout the day.
If staying in a hotel room, think about what you will need to wash syringes and feeding supplies in the hotel room. Consider bringing a small bottle of dish soap and sponge.
For traveling through airports:
Arrive extra early to the airport as security will take longer.
Consider wearing your sunflower lanyard to alert airport staff that you are the primary caregiver to a disabled individual.
Consider purchasing medical alert tags like these for suitcases that contain medical supplies.
Many airlines allow a free checked bag for medical supplies. This can be useful for bulky diapers, wipes, extra feeding supplies, etc. There is no weight limit.
Pack all formulas, medications, and medical equipment into carry-on suitcases– Do not check these supplies!
For those on a feeding pump, consider an adaptive backpack or flying squirrel pump hanger
Keep physical copies of your loved one’s emergency letter in your diaper bag/purse/backpack. Consider putting the letter in a transparent plastic sleeve. Keep a digital copy as well.
Pre-prep as many medications as possible and carry them in a small ice chest, if necessary. Check with your pharmacist on what meds are safe to pre-prep.
Place any medications/ formula/ Emergency meds you will need while on the plane in your diaper bag/purse/backpack where it's easily accessible, as opposed to in the overhead storage.
Keep a change of clothes for you and your PDCD loved one in your carry-on
Consider giving your flight attendants a small gift paired with a small card that tells them about PDCD loved one. “We have done this every time we have flown with Abby and they always have remembered us and been extra helpful when we had a feeding accident and a bathroom accident. They all checked on us during the flight to make sure Abby was comfortable. We do things like keychains, prepackaged treats, lanyards.” - Nikki, K. PDCD Mom
Take a travel pack of clorox wipes and wipe down all surfaces on the plane your child might touch. As well as a hand sanitizer clipped to your diaper bag for easy access
