8 yo Daughter Just Diag. w/ Mito Enceph Complex 1

[Guest guest]

Hey, All --

New to the group, and my wife joined recently, too.

After 4½ years of heartbreak in trying to obtain a valid diagnosis

for my youngest daughter's severe epilepsy and other med issues

(sensory integration, cyclic/chronic vomiting, etc.) we have finally,

on 09 Feb 05, obtained a valid diagnosis. She underwent a muscle

biopsy, skin biopsy, and lumbar puncture in November and the results

came back Wednesday night for, primarily, Mitochondrial

Encephalomyopathy Complex I, plus others. It has taken me 2 days to

be able to say the dang word.

I'm not sure where this will lead us if anywhere, and I'm not sure if

this diagnosis is a good " bad " thing or a bad " good " thing but at

least we have a target--a name--instead of just " I don't know " ...

After reading some of the posts in here this evening, I think this

will be a good place to start to learn.

Hope to get to know all of you, my prayers to you and yours...

A Dad

[Guest guest]

Hey, All --

New to the group, and my wife joined recently, too.

After 4½ years of heartbreak in trying to obtain a valid diagnosis

for my youngest daughter's severe epilepsy and other med issues

(sensory integration, cyclic/chronic vomiting, etc.) we have finally,

on 09 Feb 05, obtained a valid diagnosis. She underwent a muscle

biopsy, skin biopsy, and lumbar puncture in November and the results

came back Wednesday night for, primarily, Mitochondrial

Encephalomyopathy Complex I, plus others. It has taken me 2 days to

be able to say the dang word.

I'm not sure where this will lead us if anywhere, and I'm not sure if

this diagnosis is a good " bad " thing or a bad " good " thing but at

least we have a target--a name--instead of just " I don't know " ...

After reading some of the posts in here this evening, I think this

will be a good place to start to learn.

Hope to get to know all of you, my prayers to you and yours...

A Dad