Activities to Avoid?

For those of you living with Chiari, what kind of activities make your headache more severe? My 5 year old daughter was recently diagnosed. Physical activity is certainly a link to her headache but I was wondering if anyone your could be a little more specific and help us come up with a list of items that are more likely to be a problem. If anyone of you have a little one, it can sometime be a frustrating conversation getting information out of them. Like the, "what did you do a school today"...."nothing". I'm pretty sure they didn't let you do nothing all day. :)

I've spoke with her PE teacher and asked her to allow her to sit out if she complains about a headache but we were trying to give them a maybe a little more information but still allow her to participate.

So from the information, the lifting and straining are pretty obvious. Now I do I have another reason she shouldn't be carrying her baby brother :) it will make your head hurt? What about running, bouncing? Standing on your head (maybe this make the herniation move up...haha) ? Try to think 5 year old actions..

Or other mom's have a similar situations? How did you handle it with the school for PE and recess? Fortunately we have a very small school and everyone is receptive and helpful.

Thanks in advance for your suggestions.

Was trying to think of more, but obviously no little girl football or bumper or riding cars, or any other contact type activity to add to the mix. At that age a lot becomes contact activity, so maybe at times have her wear one of those nicer riding or sport helmets. It may protect the rear of head a little, but who needs any additional other problems if you already have increased head CSF pressure.

Just wanted to get a quick reply out to you, but I'll think more on it.

I think for my daughter bouncy houses caused terrible headaches before we knew she had Chiari. Now that is an absolute avoid for her. Also jumping rope seems to be a problem. Standing up for choir class for a long time or sitting on the floor like for a story time bother her. Maybe go watch her for a school day and that might trigger some ideas for you also.

My daughter also had a tumor in her clivus. When we were dealing with that last year here are a few things we did. My daughter hates to tell anyone at school until she is hurting really bad. Are their signs she is having pain that you could alert her teacher to watch for? Also she had a special signal with her teacher that she was hurting and needed to go the nurse. That way it wasn’t obvious to all the other kids.

We found things that they could play at recess that were calmer and bought them for the school.

I educated the school nurse aide and teacher on her condition and had a written medical plan in place with the school. Also we have a 504 plan in place.

Hope some of these help.

Anything that mimic the whiplash motion, and keep her extra hydrated!

Thank you all for your comments and suggestions. I appreciate it!

I've never been able to jump or be upside down w/out pain.

Actually, hanging upside down or doing headstands/handstands usually helped my Chiari symptoms. My neurologist said that was pretty common as it does something with moving the fluids (blood & CSF). He wasn't necessarily recommending it, but he also wasn't the least bit concerned that I told him the one thing that helped was to "hang upside down like a fruit bat". lol. Jumping, spinning, sneezing (untreated dust allergy) & straining all made symptoms worse. I was also told, like gag, to avoid bumper cars, roller coasters, those anti-gravity rides, and the spinning tea cups at Disney. Before she participates in sports, you might want to check with a Chiari specialist.

As far as her not wanting to talk about it, a lot of times the little ones are okay communicating in other ways -- drawing a picture, having a complaint box or a wishes box, or having a special secret phrase or hand signal they can use when they need to talk to you. Keep the signal consistent from home to school. Keep reassuring her that she can talk to you or ____ or ____ because you are the experts & will know how to help her (or get help). And then really make an effort to keep emotions in check around her (not saying you don't, but my mom would just get hysterical at times and tell me she worried I would die young). Little guys aren't really equipped to handle negative emotions & worry they'll make their parent/teacher/nanny too mad & that person won't want to take care of them anymore. It's not rational, but their reasoning ability isn't fully developed.

If part of the issue is classmates/teachers/school staff not being supportive, you might consider offering to provide a book for the teacher to share with the class. There are a few children's books about Chiari out there; there are also books that celebrate differently-abled persons like "I'm Like You, You're Like Me" by Cindy Gainer. Finally, at age 5, children are very good at making up stories so creative play & creative storytelling are wonderful ways to get kids to open up more about their lives/problems. If you're ever interested in more information about those techniques, I'm happy to share. :)

Hello chmom,

This article from the newspaper I work for sums it up best: Girl Wrestler takes states She's an 8 year old and loves wrestling, and is doing it extremely well, even with Chiari.

I think the basic idea here is this: Let her try to do what she wants, and if it becomes too difficult, stop. She will never know what she likes if she's unable to explore the world through play. I think the hand signal that the others here are talking about is a great idea.

The worst thing about Chiari is that you feel like you are afraid to try anything, and I know I wouldn't want to take any normal activity from her if she enjoys it. It might turn out that she's an excellent gymnast or basketball player. Let her be the one to tell you what she's not comfortable with.

For me, bouncing and jumping were uncomfortable, but not extremely painful until my late teens. Every Chiarian is different.