Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hello all my son is 31 months old and has been dx with mitochondrial myopothy but exact type is still unkown. He didn't start having problems till he was around 1. He was born prematurly and has Cerebral Palsy. At 1 he started regressing at a rapid pace motorically. He doesn't sit walk or barely roll. He is cognitivly great. Lately he appears to be getting weaker and sleeps more frequently. We recently had the micky button put in and he is now finally getting a quanity amount of food. He barely eats by mouth anymore as his strength seems diminished. He often has pneumonia. He is on 15 different meds including the mito cocktail. He was just put on valium for comfort. The thing that is the hardest is not knowing the outcome of this disease. From what I have read and heard if they are dx before 4 it's not good a outcome. I hope that I can gain knowledge and support from all of you as lately I feel very down and am not sure what the future holds. The doc is going to start doing some DNA study's on him as soon as insurance approves it. His biopsy tested neg for complex 1-4 but doc said he still thinks Leighs sounds like him. He was positive on the pathology part of the biopsy. We have done lots of reading and I understand the disease pretty good, and unfortunatly seem to be finding more and more ppl affected in my area mostly children. Caeden's organs effected so far are the brain (white matter damage is significant), muscles, heart(ck level little high), breathing problems (shallow breathing, cyonotic episodes), failure to thrive, short stature, dev. delayed so on and so on. I hope I can be of support to all of you as well as u to me. Thanks for listening. (mom to Caeden) Quote Link to comment Share on other sites More sharing options...
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