Re: Re: Charlene to Debbie

[Guest guest]

Charlene

Good luck at Dr. Daneman's. When in March do you go? I will keep my fingers

crossed that he does see more of a need to begin to discuss GH or at least

something more definitive than you got from the geneticist. Was that doctor in

Kingston?

As for school, you are wise to proceed on your own and see what is out there.

Speech and OT can be done through the school, I have never done OT privately

through CCAC but you can try. If not, it's no skin off the school's nose to put

through a referral.

Let me know how it all goes and if I can help, please, please give me a shout!

Debby B

Mom doesn't know what to think!

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> This week we took to the genetisist for our follow up.

She

> had her 'student' do the preliminary work up and then came in to

> visit. She checked him out - asked us questions - focussed on

what

> characteristics he has and then told us there really is not any

way

> that she could give us what we came for, which was some sort of

> written confirmation about RSS to present to his school so that

an

> IEP can be established. She said this isn't possible because

there

> really is no way she can say for sure - although she did comment

> that what has is definately genetic. She then focussed

on

> some of the characteristics (phenotypes) that he doesn't

possess.

> She was particularly focussed on the fact that he has no

apparent

> asymmetry. We are absolutely frustrated as she then told us to

wait

> and see what the endocrinologist says. We were a bit dazed,

asked

> about the previous 'differential' diagnosis and were told that

these

> are given merely as possibilities and the possibility remains

that

> he has a genetic syndrome - but what it is she doesn't know.

What

> kind of assurances have you all received as parents (outside of

> those whose children tested UPD pos)? Should we just give up and

> move on and hope for the best - he has had a brilliantly healthy

> winter (touch wood). I'm at a loss.

> Charlene Mom to , age 4

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