For those with kids with Chiari

[bkgrrl]

I have a 11 yo son who was just diagnosed "incidentally" about two weeks ago. Due to the holiday and timing of the finding (the Friday before Thanksgiving) we're still waiting to see when the NS thinks he should be seen. Fortunately we've done our research and may have a local backup if that isn't soon enough for my sense of urgency.

I'm struggling with not over-reacting to every little thing. I don't discuss it so much with him (we only need one hypochondriac in the house) but between my very anti-doctor husband and myself, we end up questioning every little ache, pain and complaint he has. I'm starting to feel like his therapist with all the questions, side long glances and trips to the computer to make notes on our google calendar for tracking.

Now, I know I'll get responses that disagree with what we've decided as a family to do...but he's still playing hockey. I've read paper after post after blog on this, and the neurologist cannot give us any examples of sudden death, or even a percentage of kids that continue to play contact sports that have a sudden need for emergency surgery from it. I've heard tales from both sides, but in the end we weighed the very slight risk against the definite damage not playing would do to his physical and psychological well being. He was part of the decision. And his very pertinent question was "how is this different than yesterday, when we didn't know, except now we know what we need to do if I get hurt"?

So, very long story short - anybody else out there struggling with the balance, and any other families that went through the decision to continue contact sports until they saw the NS?

Sorry so long...thanks.

[jacmurphy]

Hi.
I'm the mother of a 14 year old boy. I know that feeling of overreacting and questioning  every little ache and pain. My son's was also an incidental finding after a CT scan he had when he started having seizures.
We have never been told that he can't do contact sports by the NL or NS. But I did read a lot that it's not recommended.
Having said that. My son loves the things he does.. sports.. drama.. youth club.. swimming... and lots more.
He does suffer when he does some of these activities. And I'm sure there's going to be people out there that say I should stop him. But he also suffers just by having a normal day at school or a late nite or 100 other things that we without chiari take for granted. When my son was diagnosed with his Epilepsy early this year I told him nothing in his life would change. 5 months and a dozen symptoms later we were told he also has Chiari. This Chiari is so frightening. He has symptoms and lots of them.
But I won't be stopping him from doing the things he loves.. just praying that he learns his limitations (and quickly)
There's nothing I want more than to wrap my son in cotton wool and never let him out of my sight again.
Sorry.... this probably won't help you any. But i'm just another mother who has lost sleep debating what to do and in the end decided that my son needs to have as near to a normal life as possible.

Jackie

[selmaS]

I can not answer to ur search for someone to relate with, only want to send prayers he continues to stay safe and u get ur answers soon : )

"selma"