neurology visit

[Guest guest]

My daughter was diagnosed with RSS in May and I am going back and forth

whether she really has it or not. From being on this LISTSERV, I really do

not feel like Lindsey fits. alot of the time I just cannot relate to be

honest.

I contacted DR H back I'm may and she said regardless if she has it or not

she still needs GH. this was just by email and by giving her the measurements

and history.

Lindsey is growing fine without it. Yesterday at her neurology appointment

she was 36 pounds and 45 inches tall! She is 6.6

apparently because of my husband being 6 foot 3 this is why she has her

height.

The neurologist was ready to dismiss her i think because she has been

diagnosed with a syndrome, so that is why she is like she is. so this is when

i told him i do not think she has it, it just doesn't explain her delays. she

has hypotonia,motor planning problem, very poor fine motor and speech. she is

very immature and laughs very inappropriately, we suspect seizures. she seen

diagnosed with OCD, ODD,ADHD, apraxia and hypotonia. she also doesn't think

of the consequences to running out in traffic, running away form me in the

stores, i can go on and on... I do feel like she has something and the

neurologist said she definitely does.

So he wants us to see a geneticist that's very good in Miami. I can't wait.

BTW her non verbal IQ is 98 and her verbal IQ is 78. But it doesn't " appear "

that her IQ is that high, when you hear her or watch her. just sharing in

case anyone has any thoughts.

Jennie, Mom to Lindsey

http://lindsey03.homestead.com/mygirl.html " >Lindsey's website

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