YES I do believe she' RSS :)

[Guest guest]

Many folks approached us at the convention this year to ask whether we

were " sure " ALyssa was RSS. YOu may have noticed her incredible

improvements with her g-tube nearly 2 years ago. She is currently

entering early adrenarche and has had a tremendous growth spurt and is

in an astonishing 50% for height without any GHT.

I came across an old photo tonight that should asure any doubters of

her diagnosis. I've posted it in her folder titled ALyssa Lynn for

those interested!

Enjoy!

Dayna, Mom to Alyssa, 45mo. 40 in. 30lbs

[Guest guest]

Hey Dayna,

I think you raise a very good point. Kids DO grow out of their RSS

featurs and why it is so hard to diagnosis RSS in later years.

Another reason it is so important for doctors to be able to catch the

signs in the very begininng.

le, mom to:

Shye 10, Brock 8, and Coby (rss) & Carlee 2 yrs old

[Guest guest]

I understand that. A geneticist diagnosed when she was 3 3/4 years old.

Her features have changed especially since Dr. H has seen her and says she is

not, however, mentioned how she has some of the characteristics. When I was at

Jodi Z's house last weekend I showed both Jodi Z and Jodie Cals pictures of

when she was younger and Jodi Z asked if Dr. H ever saw the pictures

because she had the RSS look. My husband thinks that since Dr. H is the expert

there would be no need to show her the pictures because " she would know even

without seeing the pictures. " Now I just don't know how to aproach Dr. H by

saying hey look at these pictures. Any suggestions?

B

5 1/2 and Kelli 3

le wrote:

Hey Dayna,

I think you raise a very good point. Kids DO grow out of their RSS

featurs and why it is so hard to diagnosis RSS in later years.

Another reason it is so important for doctors to be able to catch the

signs in the very begininng.

le, mom to:

Shye 10, Brock 8, and Coby (rss) & Carlee 2 yrs old

[Guest guest]

Hi,

Emerence gets the same thing...she was born with a much more

pronounced bossed forehead and triangular face but grew into it

immediately. Her own geneticist thinks that (and she said this

without knowing DR. H said the same thing last year) that RSS and

SGA will be broken out into newer groups in the years to come.

Emerence had the face at birth, the forehead, downturned lips, small

chin, hypotonia, low set ears though only one is mildly out, low

muscle tone, repeated ear infection ( more SGA thing I think?), was

IUGR, has asymmetry on her left side (though not pronounced), ate

very little (I am also beginning to suspect she may have had

undiagnosed mild silent reflux as I think back to her infancy when

all she did was whine and whimper and took 2 20 min naps day), and

recently has been showing signs of hypo g (we were prescribed an

accuccheck), high arched palate (and some toher funky dental stuff

per her pedi dentist who specializes in sped needs) and curved

fingers. In genetics Emerence overwhelming qualifies since she has

so many of the characteristics just none overwhelming.

I guess maybe we will kknow for sure in the future...

, mom to 5 and Emerence 2.5 22 " 33 "

> Many folks approached us at the convention this year to ask

whether we

> were " sure " ALyssa was RSS. YOu may have noticed her incredible

> improvements with her g-tube nearly 2 years ago. She is currently

> entering early adrenarche and has had a tremendous growth spurt

and is

> in an astonishing 50% for height without any GHT.

>

> I came across an old photo tonight that should asure any doubters

of

> her diagnosis. I've posted it in her folder titled ALyssa Lynn for

> those interested!

>

> Enjoy!

>

> Dayna, Mom to Alyssa, 45mo. 40 in. 30lbs