Re: Looking for other mild RSS kids?

May 2, 2000

Hi ,

never really had that RSS look. He was diagnosed early at about 10

months old. He was put on periactin shortly after that so we were able to

get him fatten up. He was diagnosed by 3 doctors including one of Dr. H's

teachers. My wife Janet met Dr. H at the Magic convention 3 years ago and

showed a picture of . Dr. H said that he definitely did not have RSS

and gave my wife quite a hard time for taking up her time.

According to the Magic literature some of the facial features diminsh with

time. I suspect it might have to do with the development of their facial

muscles. Also, increasing their calorie intake by periactin or a feeding

tube will add fat that seems to go to the face first. At least it seemed

that way with .

I hope this helps.

Ken M

Looking for other mild RSS kids?

I hesitated sending this email as we all pray for , Mark and

today.

I would love to talk with any of you whose child has been diagnosed as

having

a " mild " phenotype of RSS, or whose kids now that they have gained some

weight are having their " RSS features " become less pronounced

(Mark/?).

Although we were very impressed with Dr. H, we also were a bit put off as we

walked in her office, and she says " this child doesn't look like she has

RSS! " . She changed her mind later. But everytime we asked her a question,

she always came back at us with " oh, 's " XXX " is nothing compared to

most RSS kids. "

I do feel guilty knowing that so many RSS kids have things much worse off

than us. But the bottom line is that isn't in school or after

school

activities with other RSS kids. So she is compared to her " normal " peers,

and compared to them, she is extremely little, and skinny, and has a

high-pitched voice.

's weight per height is relatively good. So I am guessing that is

why

her facial features are becoming less RSS?? (compared to when she was around

2 yrs).

Anyways. I would love to hear from other parents. Has anyone seen that

their child's RSS features have gotten less pronounced either as they have

gotten older or as they gain weight?

Salem (, 4, RSS)

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May 2, 2000

> According to the Magic literature some of the facial features diminsh

with

> time. I suspect it might have to do with the development of their facial

> muscles. Also, increasing their calorie intake by periactin or a feeding

> tube will add fat that seems to go to the face first. At least it seemed

> that way with .

>

> I hope this helps.

>

> Ken M

>

Ken,

That make since to me if some RSS kids don't eat well, they aren't

developing the muscle tone in their cheeks and jaw line that comes from

chewing and swallowing.

Danna mom to who eats and still has the RSS look, not as bad as

before.

May 2, 2000

Hi Carmen

In the file area is some pictures of and in one he has no shirt on