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Post by ADMIN on Sept 27, 2006 15:45:23 GMT -5
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Post by lizard on Sept 27, 2006 17:51:56 GMT -5
Thanks so much for starting the ACM forum! I know it seems like I'm everywhere here. My 12 yo son, dx'ed with autism at 2 1/2, had an MRI at the agreement of his ped and me that his rapid cranial growth in infancy warranted investigation, especially on acct of my hydrocephalus. He wasn't showing any other signs of hydro--just this ballooning of his head size, and it scared the hell out of me, to be blunt. After several attempts to get him to fast for general anesthesia (we knew fully well he'd never lie still for the thing), we got the MRI, and I called after a couple of days when I didn't hear back. I asked about enlarged ventricle size, any evidence of excessive fluid or compression of the brain, and he said none was found...but they did find something else: a 13 millimeter Arnold-Chiari Malformation. Drew was 5 1/2 at the time. I was stunned and immediately called my neurosurgeon, who got an appt set up for a couple of weeks later. After he examined Drew, he found that there was no real indication of any symptoms that would warrant imminent surgery. I was relieved, but still scared to death, as I only vaguely knew about ACM and didn't know what we would have to watch for. The only ongoing sign Drew had of anything potentially serious was his very sensitive gag, which I also have (though not as bad). When he had vomitting episodes mostly when he was congested, I started to get concerned again and went online to a forum where I was encouraged to get another opinion. I felt like a traitor, having known (and adored) my nsg all my life, but we finally went to NY to The Chiari Institute, where Drew underwent another MRI, a 3-D CT scan, and several x-rays, as well as a complete neuro exam. Again, it was concluded that no surgery was necessary at that time, and he has since experienced a lessening of some of the symptoms I was concerned about. We will probably get another MRI for him in a year or so. The TCI consult was 2 years ago. My main concern now is that I have run across so many parents online whose kids have both autism and ACM, and I am now convinced there is a connection...but what nsg would do a decompression on a kid with no physically debilitating symptoms?? Has anyone else been in this boat?? I don't know if I should ask my nsg again, or just keep digging for info. The neuro info I have read in the past several years re autism implicates the cerebellum and the limbic system (social and emotional center) as key players in the development of autism, and the cerebellum has been found, in many autistic patients, to have an insufficient number of "Purkinje" cells, which make up most of this brain structure, so I have reason to be suspicious that there is a relationship somewhere, I think. So...that's where we are right now. My life is crazy, but I thank God that both my son and I are doing very well and just hope to have answers to all of this some day. LIZARD
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