Re: RSS diagnosis from our geneticist/baby photos

[Guest guest]

Hi,

I just posted 2 younger photos of Emerence but don't have any of her

when she was a lot younger....

>

> Hi,

>

> Just thought I would post...last Friday Emerence's genetecist (who

> first mentioned RSS) diagnosed her RSS vs SGA after following her

for

> over year. Dr. H had wavered between the 2 at the conference last

> year and then decided SGA. Emerence did have a triangular face as

a

> little baby but since she is more or less an " eater " she filled out

> quickly ( I wish I could scan her baby picture). Her forehead

also

> doesn't boss as much as the more severe RSS kids, however she had

> IUGR, has the wickedly curved 5th finger, slow growth, feeding

issues

> (size, sensory), hypotonia, low set ears (although they are not

very

> posteriorly rotated), small chin, downturned lips, fluid in the

ears

> (we have been through 2 sets - one tube just fell out and we go

> Monday to see if she has to get a 3rd set - she has had about 4 ear

> infections in that ears since it fell out 2 months ago) and leg and

> buttock asymmetry. This dr. has followed her for over a year

without

> diagnosing her because she wanted to exhaust all other options

> first. DR. Irons also sees at least one other RSS kid on the

board.

> She has been very proactive and coordinates well with our endo, who

> also just agreed to a trial of Periactin before we consider/start

GH

> in the fall. She is nice enough that she has agreed to leave

SGA/RSS

> on Emerence's file as Blue CRoss won't do GH for RSS kids but will

> for SGA. She does feel that Emerence is not a severe case by any

> means but rather mild RSS. I'll be interested to see what Dr. H

> thinks this year....

>

> , mom to ,5 and Emerence 2 RSS/SGA, 20lb 11 oz

[Guest guest]

Emerence looks a lot like Coby at that age. I have been going thru

Coby's baby pictures in preparation of our MAGIC fundraiser coming

up. Coby is an eater as well and has very mild traits of rss. Until

he was about 18 months old he had those same chubby cheeks and the

same forehead as Emerence in her pics.

When we took Coby to the convention the year before last, after seeing

Coby NO ONE thought that he would be rss. He didn't have the average

look. However, Dr. H never hesitated on her diagnosis of him. He has

almost all the traits but they are very small.

Any appt with Dr. H always proves interesting and I'm sure this year

will be no exception. Any way it goes Emerence is a beautiful little

girl. She has gorgeous eyes. I'm so jealous! hehehe

Take care,

le, mom to:

Shye 10, Brock 8, and Coby (rss) & Carlee 2 yr old twin terrors!