Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Hi Liz, My name is Valina I also live in California (Sacramento area.) My daughter Maggie was diagonosed with Leigh's June 2002. We see Dr. Barshop at UCSD he put Maggie on DCA to lower her lactic levals and that has help us alot. She is also taking the mito cocktail with b-1, b-2, alpha lapoic acid, carnitine, C, E, and phenabarb for her seizures. Maggie is getting stronger everyday just have patience. If I can be of any help please feel free to email me at vcombs@... Valina mother to Maggie 2 1/2 years Leigh's Hi my name is Liz and I have a son, Milo [14 months old]who is suspected of having COX deficiency or Leigh's Disease based on his March 2004 MRI results. He justhad a muscle biopsy here at UCSF (san francisco) and they sent the frozen muscle to Columbia in NY. His MRI shows symmetric irritation/inflammation of the brain stem andbasal ganglia. His docs would not give a prognosis except to say he will either improve a little or start to deteriorate. Everything I read about Leigh's is very negative. They did put him on COQ10, Vit C and Carnitor. He has had seizures since he was 2 months old, ishypotonic and delayed. He can roll over but cant sit unasissted or walk. He has never had feeding problems.So I was very interested in reading about Dr. Shoffner and the Freshvs. Frozen debate. Milo's neurometabolic doctor feels that the frozen biopsy is as accurate and I guess I also wasn't excited about making a big trip to Atlanta or Cleveland and coming home with a fussy baby. I am hoping that the frozen biopsy does not turn out tohave been a waste of time. We're also hopeful that they can find the gene causing the problem.There is no chapter of UMDF in my area, (Northern CA) but I did jointhe UMDF, its been a great resource.Thanks for reading! Liz, mom of Milo [14 mos]Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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