HELP!!! 6 year old rolling eyes A LOT

December 16, 2011

Hi everyone,

Some of you may remember me. I'm sort of a veteran but have been gone for quite

a while - busy starting a family. I now have 2 boys.

My son, Ethan, is 6. At 4 years old, he was dx with OCTS at TCI. His only

symptom for a long time was random leg/foot pain and ocassional headaches.

About 8 months ago, he started doing this wierd " air intake gasp " thing...almost

like he needed to yawn but couldn't. It would even happen when resting. It

seemed to happen about once/minute or so, and would go on for an hour or more.

And he also started twisting/turning his head, bringing the back of his head

down, as if his neck hurt. And he did say his neck hurt. These symptoms were

consistent/regular and went on for about 6 months.

So 2 months ago, I started him on a controversial medication to help him (I'm

not going to say here what it is). Within 2 weeks, the gasping and neck

twisting were GONE. But now, he has started rolling his eyes. A LOT. They

don't " stick " when they roll. They roll up and quickly come back down. But

it's repetitive. And he is having trouble focusing. It does seem to get worse

as the day progresses. And he says it hurts behind his eyes.

Has anyone else seen this in someone with OTCS/chiari? Obviously, I think he

probably has high ICP. But does anyone have any advice? Someone recommended I

try a sublingual caffeine spray - I ordered it and am waiting. I also have an

order for an MRI - but was hesitating on doing it (why do it if I'm not ready to

go thru with surgery).

On a side note, his little brother who is only 22 months (and is just learning

to talk) has been saying " butt " and " ow " several times per day while holding his

butt (for the last 3 months). Ironically, they both have the birthmark

indicators of OTCS and chiari (Ethan has one on his lower back; Josh has one on

his PCF).

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