Hi Terri!

[Guest guest]

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