Arnold Chiari type II and Flying???

[Kimmie5870]

We will be flying for the first time with my DD12 who has Arnold Chiari type II ,which causes her to be over sensitive to many noises,textures and pressure applied just about anywhere on her body(a blood pressure cup makes her cry for half an hour).I am really concerned about how she is going to handle this flight and am hoping that someone here can help me.It seems like no one has ever heard of this ,so I have been unable to find help anywhere else.Thanks for any help you can give me.Kim

 

[SueM in MN]

Here's a link to a FAQs page about Chiari malformations for anyone who wants more information.
hopefully, you'll get more suggestions from people with families with similar situations, but here are my suggestions as a mother and a nurse.

I know you said your DD has not traveled before, but have you, so you know a little bit about the sensations/sounds to expect? If you haven't, try your children's library for books about air travel for kids (which might have some listings of what you'll see and hear) or ask friends/family.
My suggestion would be to mentally go thru the travel from start to finish and think about all those sounds/sensations. Don't forget about the security (a buzzer might go off if metal is detected on someone going thru the mettal detector). Write them all down in one column. After you've done that, go back thru and pick out the ones you think will be most problematic and just brainstorm thru some things that might help your DD with that situation. They don't have to be reasonable at the "brainstorm" point. A really silly, impossible solution may make you think of something simple that will work. Things like covering the unknown texture of the airplane seat with a known texture from home (like a medium size fleece blanket) that she has no problem with. Right now, it probably seems like the big "bundle" of travel is just full of things that your DD will have a hard time dealing with. But, I think if you look at it this way, you'll see that "travel" is made up of a whole bunch of little things, many of which you have dealt with before in other situations.

 

[The Adams Family]

kimmie,

my daughter 11 also has a chiari malformation. which she has had several surgeries on in the last 18 months. we fly out on oct 2nd for a disney cruise and i myself am worried if she will handle the flight ok. her doctor has assured me she should handle it just fine, but said to make sure she takes her meds before we go. my daughter is hypersensitive to noise so MAW ask the airline to place us in seats where it is the quietest. i hope everything works out for your trip.

thank care
jill

 

[Earstou]

There is an online support group you can join at http://www.pressenter.com/~wacma/subbing.htm
that is part of the World Arnold Chiari Malformation Association (WACMA for short). There are many knowledgeable people there who should be able to help you.
Some people with ACM worry about flying because of intercranial pressure, but because the planes are pressurized, that isn't a problem usually.
I myself have ACM I , but with no sensory issues, so can't help you with the sensory problems. I usually only have problems with my ears plugging up, so I now use Earplanes.
Do try the WACMA support group, it's great!

 

[Kimmie5870]

Thank you all for your great suggestions.

SueM:No,I have never flown and that is one reason i am so freaked out,but the books are a great idea and i plan on heading to the library this week.

Earstou~~thanks for the link I am going to sign up as soon as I am done getting my Dis fix.


Jill,I am sorry to hear that your daughter has had such a hard time with her ACM.And i hope that you all have a wonderful vacation.

 

[SueM in MN]

Kimmie, since you haven't flown before, those of us who have can help you out. Just ask questions.
For textures on the airplane seats, that will depend on your airline. Many have sort of a large weave cloth, but some have leather (or plastic that feels like leather).

 

[SueM in MN]

Kimmie, since you haven't flown before, those of us who have can help you out. Just ask questions. The best book is a Mr. Rogers one about flying -I'm pretty sure it's out of print, but your library might have it still. It has a lot of pictures that still look like what you will see and I think his book went a lot more into what you would hear and see than some do.
For textures on the airplane seats, that will depend on your airline. Many have sort of a large weave cloth, but some have leather (or plastic that feels like leather).

 

[LuvN~Travel]

Our daughter has Chiari Syndrome in addition to her other health issues. She has already had the decompression surgery, though. We've never thought about the flying issue, though. But, she doesn't complain about pressure as well. She occasionally has neck pain, that we don't know if it is related to that or ear problems, but other than that doesn't complain of anything else.
Has your daughter had the decompression, yet? Faith's unfortunately, was found because of the Scoliosis it caused.
Definitely make sure your docs are watching out for that too.
Good luck on the plane trip.
Kim