TIP of the WEEK: Traveling PWS Style

November 8, 2013

Traveling with typical children can be a challenge but traveling with kids with PWS brings another level of organization and worry. From meal planning to ensuring meds like growth hormone remain cold throughout your trip, traveling PWS style is no easy feat! Here are some ways to make the trip a little easier:

  • Contact your pharmacy or pharmaceutical company to get a cold pack designed specifically for GH injections. These packs keep the med cold for 24 hours. If your flight or travel is expected to be very long you can ask the airlines ahead of time to refrigerate your med pouch during the flight. Most airlines will allow this. If traveling by car bring a cooler designed for long term use.
  • Get all of the info regarding meals ahead of time. If your travels bring you to a PWS conference then this part is relatively easy because any conference with a children’s program will have this done for you ahead of time. If not get menus off the internet to be sure they are up to date.
  • Plan snacks, preferably non-perishable ones and have them already portioned out.
  • Allow your child to be a part of the trip planning. Have something they would like to do at the end of each day to make the not so fun stuff more tolerable for them.
  • Use social stories to help prepare for unexpected changes. “Sometimes flights get delayed and we will have to sleep somewhere else/ eat a different meal than we planned for/not see grandma for another day and this is ok, this is not something we can control”. A story along those lines can really help your child prepare to be flexible but the stories need to be read ahead of time and not in the moment.
  • Remember to keep your affect and emotions under control. If you are upset, your child will be that much more upset. Stay calm and remind yourself that this is different and everything cannot be perfect or exactly as you planned.
  • If your child is going through a challenging time or if the trip will have few chances for leisure such as a funeral or other family event that will be stressful, find a way to leave your child home. It is ok. The best parenting decisions are those that put your child’s needs first and ignore what others may think. Family may not understand your choices but your priority is what is best for your child.

Submitted by:
Patrice Carroll
Manager PWS Services

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De-cluttering the Atmosphere
The Road Trip
Latham Adults Evacuate the Cape

“Make voyages. Attempt them. There’s nothing else.”
 ~Tennessee Williams

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