Guest guest Posted May 29, 2004 Report Share Posted May 29, 2004 I hope to think we are working with great doctors (Emory in Atlanta, GA as well as consult from doctors in the Buffalo, NY area) . They are respectful of my husband and I, what we observe, our concerns, etc...I also thought we were lucky we were catching things quickly. Now I feel we are playing a " hurry up and wait " game. Parenting is a continuous lesson in patience. Parenting a child with specil needs seems to be a lesson in patience, faith, and much, much more. Re: - Welcome. W/her history, it does *sound* like Hannah has something metabolic/mitochondrial going on. The most comprehensive web-site around is the United Mitochondrial Disease Foundation's @ www.umdf.org. You'll find a wealth of information there...particularly about lactic acidosis. Don't let the site dismay you too much because each child w/a mitochondrial abnormality is completely different. It is suspected that my son, Skyler (age 17) has a mito defect...but after years of diagnostics and a lot of 'little' abnormalities, it is yet to be identified. A muscle biopsy performed and analyzed at a recognized mitochondrial medicine center is the 'gold standard' of diagnosis. I don't know where he is now, but Dr. Shoffner (once at Emory, now at ish Rite??) has one of the world's most renown labs for this work. Dr. Bruce Cohen at Cleveland Clinic is a ped neuro who also specializes in diagnosis and treatment of mitochondrial disease. Hope this helps. Tracey Quote Link to comment Share on other sites More sharing options...
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