muscle pain and weakness in sibling

[Guest guest]

Hi,

I could use some help please. I am really frustrated and worried and don't

know where else to turn. My youngest daughter, Tyler, died three and a half

years ago. She had a clinical diagnosis from Dr. at s Hopkins of

mito, Complex 1 disease. My older daughter, started having problems

with muscle pain and weakness, and fatigue about two years ago. It got to

the point about six months ago she couldn't walk well one day. Her ped

immediately sent us to see Dr. Schoffner in Altanta. also has reflux,

mood disorder, and asthma and allergies. All the tests from our Atlanta

trip for mito have come out normal, with the except of a lactic acid test

that was elevated (17, upper being 12). This is the second elevated lactic

acid that has been slightly elevated. The clincher was when Dr. Schoffner

review all my younger daughter's record he did not feel she had mito,

Complex 1. There was never any " hard data " to suggest this, and although

her muscle biopsy was slightly abnormal, he doesn't feel there is enough to

support a mito diagnosis. Tyler had just about every system involved from

seizures, to loosing the ability to walk, to non-verbal, to refux, to

motility problems, swallowing problems (g-tube), to bladder problems

(cathed). She died when her GI system shut down and she was on continuous

oxygen, from respiratory failure. My question is what do I do now? My

oldest is having a great deal of trouble with muscle pain and

weakness, and fatigure right now. To the point where she is having

difficultly walking and cannot function in school. So I have burried on

child, presumed to have mito, although Dr. Schoffner doesn't feel she did,

and another that is struggeling. My daughters ped is at a loss as to what

to do now. All tests seem to come out normal. Everyone agrees there is a

problem, and that my older daughter sufferes from a milder version of what

her sister had, but what? 's ped is recommending that we go see a

neuromucluar doctor at 's Hopkins. He is in the process of trying to

find a med that helps control her muscle pain. Any suggestions? We

tested my youngest at the best places for years and years. And she died

despite the best medical care and love. I am scared for my oldest. And I

don't want to put her through test after test if there is still no answers.

I know this is long, and thank you for reading. Is is possible they both

have a form of mito that Dr. Schoffner can't diagnosis? Tyler so fit the

profile and there was never any question until now. And I need to know how

to help . What would you do now? We have lived with the mito

diagnosis for so long, it is hard to think that is not it, especially when

it seems so.

Thanks for any help or suggestions.

Susie Nash

Mom to Tyler (forever 12) and , 17

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