Got a phone call last nite. . .

[Guest guest]

My head is still spinning.

The neuro we have been taking Chelsea to at Shriner's Hospital in Chicago called last nite. He told us she has the gene mutation for Rett's Syndrome. I spoke to him briefly, and he feels she has an atypical presentation of this condition. He said metabolic abnormalities are secondary with Rett's.

After living with the mito dx for 5 years, I just don't know what to think! I feel like I have to start all over again, and it is very frustrating!

We will be seeing her regular neuro tomorrow, and hopefully he will have received the info from the Shriner's dr, and have some insight for us.

Have to go for now. . .

e, Chelsea's mom (?)