Mom doesn't know what to think!

[Guest guest]

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