Canadian Chiari Kids Specialist - HELP needed

[Guest guest]

Anyone has a Chiari specialist who works with children in Canada to recommend?

We are from the Montreal area but are willing to travel if needed.

I have a 2 years old daughter (she will turn 2 in 4 days) who has been diagnosed

with Chiari-I 6 months ago. The neurosurgeon we saw said there was nothing to be

worried about and the malformation isn't the cause of her problems. That we

should see him again in a year for an follow-up MRI. We didn't make much of it

and continue to search elsewhere but when reading on the symptoms related to

Chiari, that fits perfectly. We contacted him again, telling him our concerns

and said that since it was that small (6mm) and the Spinal Fluid Flow was

alright, and there is no ventricular dilatation, everything was fine and her

problems were related to something else.

So we continued the testing and so far, everything came back normal except for

some inactive epilepsy activity on her EEG.

Here is a list of her symptoms/conditions.

- She doesn't talk/walk

- Global Development Delays

- Reflux

- Poor coordination

- Ataxia

- Hypotonia

- Always scratching the back of her neck

- Unexplained temperature spike

- Poor sleeping

- Chronic Fatigue

- Multiple ear infections before tubes were put in

- Trouble swallowing for the first year of her life

- Poor hearing and vision even if both tests came back fine

- Always playing with her hands like they are numb

So we are looking for another opinion but we would like to get it from a NS that

has experience with Chiari in children.

Any suggestions?

-

[Guest guest]

TCI, in NY (long island) just got a shunt and child specialist. I'm going to be

taking my son to him soon, myself!

Bea

Sent from my Verizon Wireless BlackBerry

-----Orig