Flipping out. Son now SM symptomatic 3 yrs post decomp?

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

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Flipping out. Son now SM symptomatic 3 yrs post decomp?

Postby TwinsX2 » Sat Mar 06, 2010 11:51 am

So, Joe had decompression surgery when he was 3 due to symptomatic Chiari (9mm). He also had some syrinxes. They did not go away or shrink after surgery so we have been monitoring them via MRI yearly as long as there aren't symptoms. They have slowly increased in size, but no symptoms. He is now almost 6 years old.

So, I noticed Joe flicking his fingers on both hands a lot within the last week or so. And often when he's sitting on our sofa he'll fidget/bounce his legs up and down to the point I've told him he should get up and go to the bathroom if he needs to.

Last night he told me he flicks his fingers because they itch/tingle and he can't make it stop. He then told me that practically every part of him itches and tingles (arms, back, head...).

I'm freaking out. (I know there are worse things in this world and I don't mean to sound like an alarmist/whiner, but I really never thought this day would come.)

Do you think it's okay to wait until Monday to call his neurosurgeon?

Thanks
Stephanie
TwinsX2
 
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Re: Flipping out. Son now SM symptomatic 3 yrs post decomp?

Postby tnajk » Sat Mar 06, 2010 3:04 pm

I'm sorry to hear he's having problems again. Yes, I believe it's safe to wait until Monday to call the Nsg. Good luck!
tnajk
 
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