It's been awhile

October 18, 2004

I began and temporarily ended with this support group in 2001. My

son Josh was 2 yrs old at the time and we were determined to get a

positive RSS diagnosis, but unfortunately Josh's chromosome test

came up negative, therefore, no syndrome. I sort-of " gave up " on the

notion that Josh had anything in common with any of the RSS kids and

was tired of researching, etc. and decided to " take a break " . I've

never stopped believing that Josh has RSS. Josh is now 5 1/2 yrs

old, weighs 32 lbs. and is 36 " tall. We still have issues with

developmental delays (speech, gross/fine motor skills), he has all

of the common characteristics of RSS, except for incurved 5th

finger, although is very double-jointed. Josh still has a private

speech therapist and an OT and ST (via IEP) at the public school

where he attends Kindergarten. I'm wondering if any of you have had

trouble with a diagnosis of RSS that could give me some good

pointers?

Rita

Josh's mom

October 18, 2004

-Hi Rita, This is s Mom, We have had a hard

time also I thought had something else as well , my endo

says Mild RSS Dr.H said ?? He has alot of Charecteristics to!I have

done research as well thinking what is it! My is 5 1/2 also

weighs 28 pounds and is 38/39 inches! We have been on G H now for

about 8 months and it is working . I have had to buy all new pants!

(happy) He is also in speech and OT PT and get's this separate and

through the school system! If you would like to talk please e-mail

me at little1tobein2003@... It sounds like our boys have

alot in common, I would love to see a picture, is on here ,

Talk soon

- In RSS-Support , " Rita " <rita@s...>

wrote:

>

> I began and temporarily ended with this support group in 2001. My

> son Josh was 2 yrs old at the time and we were determined to get a

> positive RSS diagnosis, but unfortunately Josh's chromosome test

> came up negative, therefore, no syndrome. I sort-of " gave up " on

the

> notion that Josh had anything in common with any of the RSS kids

and

> was tired of researching, etc. and decided to " take a break " . I've

> never stopped believing that Josh has RSS. Josh is now 5 1/2 yrs

> old, weighs 32 lbs. and is 36 " tall. We still have issues with

> developmental delays (speech, gross/fine motor skills), he has all

> of the common characteristics of RSS, except for incurved 5th

> finger, although is very double-jointed. Josh still has a private

> speech therapist and an OT and ST (via IEP) at the public school

> where he attends Kindergarten. I'm wondering if any of you have

had

> trouble with a diagnosis of RSS that could give me some good

> pointers?

>

> Rita

> Josh's mom

October 19, 2004

Hi Rita, I'm . My 9 month old RSS daughter had a chromosome

test done to rule out anything that immitated RSS and everything was

negative, then we had the UPD7 test done and that came up negative

also, but only 10% of kids with RSS test positive, the other 90% get

diagnosed based on ruling out everything else and clinical findings,

such as my daughter's diagnosis. Our genetisist told us that with the

test, negative means absolutly nothing and does certainly not rule

out RSS, but a positive would give an easy diagnosis that she is one

of the 10%. I would suggest you find a good doctor that understands

there is no true test for RSS or go see Dr. H in New York. I

haven't been there, but everyone on this website raves about her.

Where do you live? Is there any children's hospitals or doctors who

specialize in growth disorders? We are lucky we live close to

Cincinnati Children's Hospital in Ohio, so there are tons of doctors

to go to. I would definitly look into it with him being only 36 "

tall at 5 1/2 along with everything else you mentioned. Good luck to

you!

mom of Autumn 9 mos and 2 boys