Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 Hi Nelia This is a wonderful group to be part of with a lot of great advice. As for UCSF, my son is seeing Dr. Sherr (Ped. Neuro) and Dr. Packmann (Metabolic Geneticist). We just came from an appointment two weeks ago. My son is definately getting stronger (more muscle mass) but they still want to do an extensive MRI (something about checking the flow of chemicals/nutrients in the brain-as I understood??) and a muscle biopsy. I'm pretty nervous. UCSF has been very helpful for us. I didn't recognize any of the doctors (except Dr. Packmann) you mentioned, are they in the NeuroMetabolic clinic? Does your daughter have metabolic issues? You can email me privately if you like. Quote Link to comment Share on other sites More sharing options...
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