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OK- Now what?

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I received a message from Emory Genetics that my son, , who

was diagnosed with RSS last week, has normal growth hormone levels.

So, now what? I have read that we can increase his caloric intake,

but he simply does not have an appetite some days.

I did not have a chance to call thwm back to ask questions, so they

may have some suggestions. However, has VERY mild physical

charastics of RSS. However, he is 2 1/2 and weighs about 21 pounds.

Now, for some background- my husband is 6'4'' and weighs about 190

so he too is tall and thin. I am 5'11 and my daughter is 5 and is

taller than EVERYONE in all of her dance classes and at school.

I am just a bit confused. His ped. office ran me ragged with every

test from Cystic Fibrosis to Renal Tubule Acidosis to try to pin

point why he is not gaining weight.

I just want to know if any one else has this situation, and what you

all may have done in this situation. I also posted a pic under

Furman so you could get a feel for my two kids. Thia was

taken in February of this year...

You guys are fantastic!

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