Re: characteristics of complex 1 defiency-long

[Guest guest]

Again as all have stated each child is different. I have 3 boys Jake - 11 1/2 and twins Clayton and Cole (7 1/2). Also i had a still born at 28 weeks between the boys due to an internal placental abruption caused by a clot. Anyway - when Clay was in utero - as I was high risk they noticed lots of things wrong but an amnio showed nothing and other testing showed nothing. They were born 6 weeks early clay was 4.4 and cole 5.5/ At 4 days clay stopped breathing - he aspirated and at that time both diagnosed with reflux and apnea. 2 kids on monitors - at 9 months cole was fine (except for a bout of spinal menegitis at 6 months) - Clay continued down hill with lots of eating issues reflux, etc. Eventually at 16 months at 16 pounds had a g-tube placed and missan done. Still having neuro issues. He never crawled but he did walk at 14 months (severe low musle tone in upper body) - Jump ahead - at 2 1/2 - he was inpatient at Kennedy Kreiger for 9 weeks and lots of tests etc and Dr. kelly based on blood work and and mris diagnosed him with mito suspecting complex I and IV. Jump ahead to ahead 3 years. In november of 2002 we had a muscle biopsy done by Dr shoffner - to confirm the diagnosis and also cause my oldest showed some signs too (surprsingly Clays twin has no problems except ADD). The muscle biopsy confirmed the diagnosis and it is believed it is maternally inherited. Well at 7 1/2 Clay does not have a g-tube and eats and eats but does not gain he weighs only 37 pounds and 41 inches. His twins is 44 inches and 47 pounds. Jake at 11 is only 54 pounds. jake also has crohns and severe fine motor delays and severe add. Dr. kelly has often told me that he often sees younger siblings with mito where the older child is ADD. Clay has other label - PDD, dD, etc. He is in a self-contained class at school. But if you were too look at him he looks fine - like a typical 4-5 year old. His MRIs from 6 months and 3 years and onward show some difference but how that effects him we do not know. I dont live with what ifs but with today. He is a lot better off than many kids on the list but he has issues and so does Jake. As for a prognosis - think that all depends on the kids and proliferation.

hugsSharonI ran the Marine corps marathon on 10-31-04 -- check out my page - http://www.aidsmarathon.com/participant.asp?runner=DC-2308 & EventCode=MC04