My complicated daughter.

[ayla774]

I have a question about direction and how I should procede with my daughter.  She is 9 1/2 yrs old.  She has confirmed diagnoses of; Mitocondrial disease, autism (pdd-nos), legally blind, ADHD,(she is moderate to severe developmentally delayed) precocious puberty (pubic hair and underarm hair started at 7 yrs old)  advanced bone age of 2 years, emmino supressed, and cliteral maglia and a seizure disorder.  {sorry for spelling issues}   She has been on the Mito. cocktail for over a year and recieves IVIG monthly.

So heres the question: any suggestions on her bone growth and puberty.  She is sterial (had 2 lb overian cysts at birth-removed overies)  I am not sure how much more to put her through, of course I want what is best for her, but I just don't know.
I know her above info is probably hard to believe but it is and I need advice.

[mamawith2girls]

Hi,

If you haven't been there already, I would really suggest you become a member of http://www.parent-2-parent.com

There are several parents on that forum with medically complex children, and they would likely be able to guide you to some of the best geneticists, endo and mito doctors around, as well as offer you support.

Good luck!

[margypops]

We do have an Autism /Asberger's expert Forum they may have some suggestions for you, hope you find some answers.

[margypops]

May I ask you what her Doctor suggests have you asked him about the treatments when you say you don't know how much more to put her through can you enlarge on what you mean ? here is a link that may help get you some answers    www.umdf.org/site/apps/nl/newsletter2.asp?c=otJVJ7MMIqE&...  Good luck

[melipops]

Hi, You need to take these problems to a specialist I'm sorry I don't have much more to offer. Just wanted to let you know someone had read your post. Thjis could probably go on the ask a dr forum for more informed answers. This must be super hard for you and i am wishing you some happier times ahead. Good luck