Re: Canadian Chiari Kids Specialist - HELP ne...

[Guest guest]

Dear ,

You might want to look at a couple of web sites for information on

mitochondrial disease, something that I have. I have found many Chiari families

with mito. Just something else to consider. The web sites are _www.umdf.org_

(http://www.umdf.org/) , and _www.mitoaction.org_

(http://www.mitoaction.org/) . Does she have a diagnosis in addition to Chiari?

Thinking of you!

Barbara

In a message dated 5/25/2011 9:08:31 A.M. Eastern Daylight Time,

djou2424@... writes:

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?

-