Will Dr. H give a definite diagnosis?

[Guest guest]

Hi everyone. How did all of you get the RSS diagnosis? My

daughter's genetisist told us yesterday that he will not officially

diagnose RSS until there is a definitive yes or no test out there.

Her UPD7 test came back negative and there is no other ones

available. He has ruled out everything else to be causing her size

including growth hormone which is normal. He said the RSS is based

upon clinical findings and is a clinical diagnosis which is different

I guess. He said it would explain everything about her and he's

pretty sure. She has her head size in the 50% and a small, slightly

triangular face with a broad wide forehead, her body percentages are

not on the chart. It seems to be a milder form of RSS. She is 24

inches and up to 12lbs 15 oz at 8 1/2 months. She is devoloping

right on target but she has a horrible appetite and I am working so

hard to keep her nourished, but she won't take enough, saw a

nutritionist but the advice was not helpful!but....that's another

story I am thinking more and more about this Dr. H and I think I

would like to take Autumn there. Is she absolutly certain of her

diagnosis of children? How long does it take to get an appointment

there? Do I have to make it many months in advance? I live in Ohio

but my stepmother lives in NY about 3 hours from the city and maybe I

can coordinate a visit. How do I get started? What is it about her

that makes her the best?

Thanks for any info

Mom of Autumn poss RSS and 2 crazy little boys