Guest guest Posted November 20, 1999 Report Share Posted November 20, 1999 barbara, Lexi has had a skin biopsy which gave some answers but was inconclusive. Her neuro has urged us to do the muscle bio, but we are waiting as long as we can--have had enough of Doctor Bingo for one lifetime, thank you very much!! Right now her condition is fairly stable (thank God) so we are waiting until such time when her situation changes before we do further testing. She had so much done to date that we felt this was the right thing to do for our family. We have a tentative Dx of mito myopathy, which affects her respiratory transport chain--and for now that's enough. She still gets Ot and is just starting feeding therapy--she chokes all the time-- for a grand total of 4 hours per week for my 19 month old baby. WHEW! We did graduate from PT for the time being so that's a bit of a break. Lexi has been on part of the vitamin cocktail (Carntine, CoQ10, Riboflavin, and now Bicitra) for the past 16 months. I definately think it's helped her out, although the results were never dramatic, just slow but steady progress. Anyway, I think it's a definate help and worth the effort to try if Corbin isn't on it yet. The only thing it doesn't help are her seizures, but right now they are not casuing and serious problems so we don't have her medicated for them. Hope these thoughts help!! ruth Quote Link to comment Share on other sites More sharing options...
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