Guest guest Posted September 3, 2012 Report Share Posted September 3, 2012 no from line) Subject: (no subject) In a message dated 99-05-14 17:23:05 EDT, you write: << Do children with Mito disorders have dysmorphic features? I guess what I'm saying is I dont want to start the research mode if it doesn't even come close to fitting my daughter. When I start researching something....I never stop! I can tell you everything you would ever want to know or not want to know about the syndromes she has been tested for! Thanks for listening...sorry it was so long! Any ideas, opinions or questions would be great!! Tomi, mom to Madison 3.3 8, 5, Will the wild man 14 months kansas............... >> Dear Tomi: Welcome to MitoList! You'll find lots of support and information here. I would suggest you go to the library and find a book called: Physician's Guide to Rare Diseases, second edition Edited by Jess G. Thoene, M.D. Dowden Punlishing Company Montvale, N.J. Also call the NORD (Nat. Org. for Rare Diseases) 1- office and ask them to send you info on Mito. This is a start. I think you are great for doing the research yourself. I have run into to many medical professionals who don't like their ego's dented when you want to discuss something and in addition like to tell you what to do with your own child. Often their therapies are worthless. In addition, with the climate of the medical insurence community our children get lost 'tween the cracks! Hope all goes well! Lynnie Wife, Mother to two with " suspected " mito encephalomyopathy, Advocate Quote Link to comment Share on other sites More sharing options...
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