re previous post of quetion from a new member

[Guest guest]

Hi everyone!

I recently raised a question to the members of the list

as to whether or not I should share the web site addres

with Blair's Dietician,ie. health care provider. She is

a very sweet person and wants to learn more about RSS, as

she has had no experience with anyone with that diagnosis-

however I tend to agree with Kathleen's remarks about how

it might intimidate members from being as verbal about

doctors and other health care providers. Therefore, I will

take Kathleen's advice and simply share pertinent infor-

mation with the Dietician that I think will be helpful to

her. Keep in mind now that Blair does not have a diagnosis

of RSS as yet. However, the more I read your stories and

experiences, the more I see my Blair being described.

Especially when it comes to the feeding situation. As far

as I am concerned Blair has a very poor appetite, except

perhaps when it comes to her formula. She is still on

Nutramigen, more concentratd so as to increase calories.

My mother(Blair's great-grandmother also sees this as a

problem. But when I speak to Blair's mother, she sometimes

reports that Blair is really eating now. I do think that

she is somewhat in denial about this though. In case you

are wondering, Blair is my son's child and he and the mother

are not together. To refresh those of you who may not have

seen my very first post: The characteristics of RSS that I

notice in Blair are: a small chin, IUGR, poor growth since

birth, poor appetite, high energy, and I was told the pedendo

says she notes incurved 5th fingers. Oh, and also she had

severe reflux when younger, and she has had quite a number

of ear infections. Based on all of this information, do you

guys think it is reasonable to at least suspect RSS. But, even

our geneticist commented that " She just may going to be petite. "

Her father is of average height, and her mother is approx. 5'10 " .

One thing I haven't heard any of you mention is a small head

circumference. Blair's is quite small, although it looks quite

proportionate for her. I think this may just be inherited,

because her Dad has a relatively small head circ. Blair is

very low on the growth grid for height, and well below the 0

percentile for weight for her age(even adjusting for 4 weeks

prematurity)

Can some of you tell me who usually actually makes the diagnosis

of RSS? Is it usually the endocrinologist or geneticist?

One more unrelated question---Do most of you post your

messages by going to the web site and selecting post, or

do you use your e-mail program. I'm just wondering because I

had a little problem with the way my original post shows up

in the Digest for that day. Well, I've gone on for long enough

I guess, so I'll go. Thanks for any and all input. You guys are

great! Ann(grandmother of Blair,16 months old today and

approx. 15 pounds 12 ounces,not diagnosed with RSS)