Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 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. Quote Link to comment Share on other sites More sharing options...
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