Hello & Help!!!!!

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Gloria -

Your story does sound familiar. Although some of the symptoms are different

from my child's, there are others on the list whose children match the

differences. Is the tissue for a muscle biopsy to test for suspected

mitochondrial disorders? If so, it is important to understand the difference

between fresh and frozen muscle tissue samples and the impact it has on the

accuracy of test results. There is good information at the United

Mitochondrial Disease Foundation in a downloadable copy of an Exceptional

Parent publication ( " Mitochondrial and Metabolic Disorders: A Primary

Physician's Guide " ). Here is a link:

<A HREF= " http://biochemgen.ucsd.edu/mmdc/ep-toc.htm " >Physician's Guide to

Mito</A>

Basically, though, the main point is that fresh muscle tissue provides the

best shot at getting an accurate diagnosis. There are only a few centers

that do the fresh muscle biopsies.

There are many people on the list who have good information . . . and I am

happy to share our experiences, too. Feel free to ask lots of questions!

Kathy C.

mom to (8, nda) and (3, mitochondrial encephalomyopathy, complex I

and III defects; history of failure to thrive, reflux!, feeding problems,

formula intolerance, vomiting, diarrhea, torticollis, fundoplication, g-tube,

seizures, stroke-like episode, muscle tone issues, etc. etc. etc. but doing

GREAT right now!)

[Guest guest]

Dear Gloria,

You have indeed found the right place!!! You are in good company in that in

one way or another we have all BEEN THERE. My daughter is 21 months old now,

and has ALWAYS had GI problems, terrible difficulty gaining weight, and

difficulty tolerating foods of any texture. She is still using a bottle

(much to my mother's horror!!) that I supplement with whole organic cow's

milk, cream, melted butter, and powdered milk...WELCOME to you and your

family!!

ruth

'mom to Mitch (4 1/2) and Lexi (21 months)

STEVEN G. HILAND

PH.# 949/830-7696