Which activities to allow?

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

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Which activities to allow?

Postby lttutrow » Sun May 11, 2008 8:50 pm

Do you ever feel like you just want to wrap your kids in a bubble?? We've known for over a year my 9 y.o. has a Chiari and now a syrinx, and now surgery is scheduled. But, that doesn't stop him from still being a 9 year old boy. He is so active, and when he feels well, wants to go full throttle into everything!! Last night we were with friends, and he wanted to ride some bumper cars. They're supposed to be for very small children, but of course, he got hit from behind and it tilted his car up and gave him quite a jolt. All day today, his neck has still been sore. The other day he was home all day from school with a headache and not feeling well, and at the end of that day, he mentions they ran races for times the day before at school and he won. He doesn't hold anything back in his activity/play. How in the world do we balance their need to be "typical kids" with the fear of them being injured in the process?
Lori
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Re: Which activities to allow?

Postby brianfsmom » Mon May 12, 2008 6:03 am

Hi Lori

My best advice would be to choose your battles. If he wants to run the race as fast as he can and win it, if it gives him a headache, that is his choice, but I would tell him no way on the bumper cars - if the head pain from running gets bad enough, he will stop it on his own. But anything that could result in accidental injury, such as bumper cars, tackle football, wrestling, or jumping on a trampoline - I draw the line at that. As I do with skateboarding or biking without a helmet, as all the kids do these days.

My son was also 9 when he was diagnosed and decompressed, so I know what it is to fight those battles. Unfortunately for him, the chiari and/or syrinx has taken away some of his coordination and strength to the point where I don't think he will ever be able to win time trials in gym class, but he is happy to be able to not finish last!! On the other hand, these things also don't give him a headache, so I guess it's a trade-off. Oh, and the other conflict comes with the rides. That's one of the hardest things, but thankfully, it's seasonal!

We just try to find a balance. I won't lie, it is difficult and it can get worse as they get older and kids can be mean - such as about the helmet or the balance issues on a skateboard. But he plays baseball and basketball, he has accepted my helmet rule, and I just hold my breath and pray! In many ways, you do have to let them be a kid.

Good luck!
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Re: Which activities to allow?

Postby Janice » Mon May 12, 2008 9:29 am

Great advice!!

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Which activities to allow?

Postby lttutrow » Mon May 12, 2008 1:00 pm

Thank you for the great advice!!! It's so hard to just let them be a kid sometimes, and figuring out which activities are reasonable to allow...which battles not to fight....
I just got a copy of the latest MRI, and it mentions that there is possible straightening of his cervical spine, in addition to a syrinx from c3-t5. So, perhaps telling him it is important to protect his neck will help reinforce why not to ride the rides :) Thank goodness we live in the Midwest, so it is definately only a seasonal issue here.
I'm so sorry to hear your son's balance has been effected as well. Kids can be so mean to each other about their differences instead of looking for ways they are alike!!
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