Update

[Guest guest]

Hi All

I have been working for 8 months to get in to see Dr Russ Saneto who is a Mito

Dr in Seattle At children's orthopedic hospital we had to get a dispensation to

see him.

We went last Friday It was so nice just to be understood and not told that there

is just nothing that they can do and oh by the way its anxiety here is some

lorazapam to give him,

I asked this Dr if I could take him home with me he laughed.

He gave us some Good news and bad news

Good news he put Duane on a cocktail and we have permission for 2 more visits

that we are going to hold on to for the future and he will work with Duane's Drs

from now on and I can e-Mail him any time with questions.

Bad news was Duane is co Q 10 deficient and this was treatable so if we started

this 8 years ago when we found out that there was some thing wrong he probably

would not be as dysfunctional as he is right now, it would have stopped the

progression because it is not a gene mutation it is a deficiency, we could have

actually had a life, Duane at this point is probably at the level of a 5 year

old in his understanding and his balance is very bad using the wheel chair all

the time when we go any where, he can not tolerate any exercise at all.

his diabetes is under control at this point which is good this has taken 8

months to stabilize and educate me.

I cant tell you how good it feels to have a Mito Dr finally

I have been very quiet on the list for a long time because this process has

been very time consuming and I have been very depressed over Duane's decline,

and feeling very alone and sorry for my self.

Thanks for listening

Hugs As Always

Jan