RSS diagnosis from our geneticist

[Guest guest]

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]

Well, I think that sounds like progress. It should make it easier to

get services (I assume, I know it helped for my autistic son).

HUGS from CA,

J

RSS diagnosis from our geneticist

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