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Does anyone know any good metabolic specialists, I see Seattle's Childrens hospital, but have heard that maybe there's someone in Boston? I'm also looking for a good Ped. Coeur d' Alene Peds in Idaho just isn't working, my daughter is 7 months old and was diagnosed with MMA+HCU, I'm told that there's only a 100 cases in the US right now, I really need a parent to talk to thats been through this thank you!
Someone had told me a long time ago on here that there is a great doctor and I think that might be the one your talking about in Boston. His name is doctor Levy. His e-mail is Harvey.Levy@childrens.harvard.edu
I'm not sure if it's a current e-mail or not. I wrote to him about my daughter two years ago. I never did end up going to see him so I really can't say much about him. My daughters pedi actually worked with him for a while and said he is a great doctor that is really interested in PKU and Homocystinuria. I hope this helps you. Hang in there...I know how difficult it can be to find anyone who even knows what the heck homocystinuria is.
Hi - have you checked out the Organic Acidemia Association (www.oaanews.org)? We have quite a few families with children with MMA Cbl C. We host an internet listserv (sign up on OAA's website), and also have a Facebook Group. We publish a newsletter and our recent issue has an article written about a 14-year old with MMA Cbl C. We welcome you to join OAA - we would love to connect you with other families.
Kathy Stagni
Administrative Director
OAA
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