New member - Mito resources in Alabama?

[Guest guest]

Hello. I'm Liz and we have been blessed with a son with profound

special needs(12). This year, I've been praying to walk

in " acceptance " of my son's disorder than to continue on in the

sadness and frustration as I watch him slowly regress.

My son has never been diagnosed with Mitochondrial Disease. He has

usually stumped his doctors and his medical care has been a sort

of " let's take care of the symptoms " or one of just " observation. "

He also was never diagnosed with Autism while we lived in California

but after watching his behaviors, once I took him to a specialist

and they performed the testing, he was diagnosed with Autism.

For 8 of his 12 years, we did try the " study " route and accepted a

diagnosis of metabolic disorder (nucleotide depletion disorder) and

gave him experiemental medication (Ribose and Uridine) from a

university in California. We found no benefit in the drug and left

the study about two years ago.

His regression started in 1999 and he's lost his ability to talk as

he used to, sing his songs as he used to, can hardly feed himself

and his walking is pretty shaky. The mainstay has always been

seizures. Those have never gone away since his first at 7 months of

age. He's not had a status episode since 1996 so we've stayed out

of the hospital for many years, thank the Lord.

Mitochondrial disease was mentioned by another mom in the California

study but we never pursued it ourselves. We thought the study was

going to be the path to take and now I find myself here at this

support group list, reading all your posts and feeling that our

children have so much in common.

I'd like to ask for suggestions on beginning my research in Alabama

for a Mito doctor.

I'm tired, I'm blessed. I'm asked since Mito has no cure, why would

I want to know if he has it. I responded that I just want to know

what I'm dealing with. After all these years, I still don't feel I

know what I'm dealing with.

Anyway, please forgive the erratic words, jumping here and there.

There is so much behind this smile of mine. I scare people away

when they ask " How are you today? " Once someone wants to know how I

am " really " .....I feel I have overwhelmed them. Thank you for the

support offered here. It sounds like I finally may have found an

answer.

Liz

Alabama