Travel tips??

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Travel tips??

Postby TiredMom » Sat Oct 24, 2009 8:43 pm

In December, we're travelling with Preston (by plane) from San Antonio TX to Memphis TN so Pres (and his sib) can take part in a genetic study related to his 15q duplication issue.

So... we need travel tips. He has CM. It hasn't been causing as many problems lately. He's working with OT and PT and has come up with lots of ways to make accommodative movements so that he can do more things than he used to without headaches or neck/shoulder/arm/back pain.

What sort of things should we do to help him stay comfortable on the trip? He has a u-shaped neck pillow for travel in the car-so we'll take that. I'm not sure yet how long the flight will be or whether we'll have layovers (the trips being funded through an NIH grant and the research group is making arrangements). Should we make sure he gets up and walks as much as he can during the flight? Car travel of over an hour each way usually results in headaches and neck pain.

We're taking a Snuggie blanket on the plane as he's always cold, no matter where he is.

Any other tips would be helpful!
Mom of 9 yo boy with Chiari I, Pineal Cyst, Microdup. Synd. 15q, Mito. Disorder, Ctrll. Sleep Apnea/Sleep Mvmt. Disorder, Asperger's, Hypotonia, Aphasia, GAD, OCD, occipital headaches, etc. Visit at http://caringbridge.org/visit/prestonbyrne
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Re: Travel tips??

Postby lttutrow » Sun Oct 25, 2009 9:07 pm

Great topic, I'm interested in ideas to help with this too!!!
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Re: Travel tips??

Postby jupes » Mon Oct 26, 2009 9:05 am

Great that Preston is participating in this research study!!! :)

You have some good ideas to make the trip easier-blanket pillow ect. I would bring other comfort items and activities to entertain and distract him too. Getting up for periodic walks or a stretch sound good too especially if it hurts to sit. You could let the flight crew know of his special needs so they can better accommodate him. I would think a flight from San Antonio to Memphis shouldn't take too long.

Good luck and let us know how everything turns out!
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: Travel tips??

Postby DeAnne » Tue Oct 27, 2009 12:52 pm

Hi,

We fly, across the country, to our doctors. We have found the "inflatable" neck pillows, offered him better support on the airplane. We also book an extra seat, to allow him move movement.

Enjoy your trip!
Deanne
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Re: Travel tips??

Postby TiredMom » Thu Oct 29, 2009 12:57 pm

Well, our trips been delayed 'til the spring. At least that means the weather should be better and travel easier (maybe).
Mom of 9 yo boy with Chiari I, Pineal Cyst, Microdup. Synd. 15q, Mito. Disorder, Ctrll. Sleep Apnea/Sleep Mvmt. Disorder, Asperger's, Hypotonia, Aphasia, GAD, OCD, occipital headaches, etc. Visit at http://caringbridge.org/visit/prestonbyrne
TiredMom
 
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