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Question for the Doctors here on CCI

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Is there any study or a study underway in regards to ACM1 and the

relations to a childs behavior?

My son is 13. He is schedueled for decompression surgery in June.

His behavior has increasingly been getting worse and it all revolvs

around his head pain and pressure. His NS is a world renowned NS.

But the surgeons PA does not seem to know much about ACM. I called

and talked to her about his symptoms and she said that it is no thing

to do with the ACM and I needed to see his ped. Doc for that. Now

not to get into a long explination here. But as a Mother, I know my

child quite well and know that his behaviors are linked to his

chiari. He has ADD and was also diagnossed with Asburgers and

Personality Dissorder. Now after those diagnoses (asburgers and

personality dissorder) he had a MRI and it showed ACM1 and Arachnoid

cysts on the brain stem. The past 8 months have been increasingly

getting worse. I posted on here and got many responses from other

parents that their children displayed the same symptoms. I plan on

taking copies of the emails I recieved and copies of some of the

files on CCI with me to the ped's appt. tomorrow. I do not want my

child to be treated like he is faking or lazy or even crazy. This is

something I feel that needs to be u nderstood and documented

medically.

Thanks for reading

Kellie

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I would love it if this could be replied to the group.

I have witnessed similar behavioral issues with my 8 1/2 year old son, who has

not been tested for ACM yet (his older brother and myself have it), but after

reading sporadic posts on this topic I, too, am starting to wonder. I don't

know if hyper-kid (as I lovingly call him, but never out loud!!) can stay still

long enough to get an MRI, and after a brief try on ADHD drugs which resulted in

hallucinations I'm afraid of having him sedated to undergo testing. But this

line of questioning definitely has me intrigued as well.

in Baltimore

btw, he never ever complains of headaches or anything... is behavioral " acting

out " their way of letting us know they're in pain??? Any thoughts on that? He

was one of those infant/toddlers that used to bang his head against his high

chair, hence the early diagnosis of ADHD. Asberger was tossed in there for a

few months as a possible diagnosis as well, and then discarded in favor of the

ADHD.

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