Thanks for the responses!

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

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Thanks for the responses!

Postby ledestiny » Tue Mar 22, 2011 9:10 am

Hi Everyone,
Thank you so much for the overwhelming responses! I have learned so much... I have contacted the doctor in Iowa City and the doctor in Seattle. We are going to try those two places first and then go from there. I will be getting the paperwork in to them today.

Can you tell me what some of your child's symptoms are? Wade is non-mobile, non-verbal, unable to swallow, body temperature regulation, gags and retches when transitioned from sitting to lying too quickly or vice versa, gags and retches when sitting straight for more than 5-10 minutes, migraines, and that's all I can think of right now.

Can you all describe to me what you have learned about the chiari and the treatments? Wade has had two decompressions. The first one consisted of removal of the bone at the foramen magnum and a dura patch. The second surgery was removal of the cerebellar tonsils, and that's all I know. I really know absolutely no more about the surgeries and symptoms than that's what he had done.

I would like to know what questions to ask the doctors when we go.

Like does this affect his ability to grasp objects? He hasn't been able or wanted to feel anything with his hands in a couple years...

Any and all information is so greatly appreciated!

Also, my email and facebook were hijacked yesterday morning so if you got an email from me saying we were in England and got robbed, its a hijacked email. I have since changed my password and reported it to google and facebook. I no longer have any email addresses, however.

Thanks again!

Becky, mom to Wade
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Joined: Sat Mar 19, 2011 12:14 pm

Re: Thanks for the responses!

Postby razzle » Tue Mar 22, 2011 12:22 pm

Bit of advice , when going to Iowa city , have your Dr refer you to Dr. Menenez only , if he doesnt you will just get anybody . R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
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Joined: Thu Apr 30, 2009 4:55 am

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