Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Hi everyone, Mitochondrial disorders is a big question mark for us at the moment. My son Charlie is 3 years old, he was diagnosed with cerebal palsy at 8 months old. He has very low muscle tone which seems to be getting worse. November 2002 he was in the hospital for failing to thrive, his doctor informed me that Charlie had something else going on medically as well as the cerebal palsy and he would die when he reached 50 pounds in weight. December 2003 we were in the hospital for 2 weeks for malnutrition. Charlie refused to eat, a g-tube was put in and lots of labs done. We were then transfered to Atlanta, GA for a muscle and skin biopsy. A spinal tap was also done and lots more blood work. He had a EEG and a MRI, the MRI showed deteriation of the grey matter on both lobes and three other areas. We saw three neurologists, one said he was not concerned because hospital's have different MRI machines with different imaging. Needless to say I was frustrated because no one was answering my questions. I really think that the neurologist's don't know. This is such an emotional roller coaster, I'm a single mom with another son who has autism. We won't get the results from the biopsy until Feb or March. Any advice or help would be appreciated! Quote Link to comment Share on other sites More sharing options...
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