Re: Parents with older RSS children over 13yr and RSS adults

[Guest guest]

Hi -

I'm not sure what kind of RSS Adult feedback you're looking for, but if it helps

any, I did

not get any sort of treatment for my RSS. I wasn't diagnosed until I was 15

years old

(1981) and by that time I had gone through puberty (age 12), my growth plates

were fused

and I was " done. " Probably just as well, because GHT was not the same back then

as it is

now.

I'm not on any medication now, though I have borderline high blood pressure that

we've

been " watching " for the past year or so. I blame THAT on being a stressed-out

38y/o

woman, rather than the RSS <wink>. I also see a chiropractor regularly for neck

and low

back pain, but again, with so many people my age with similar problems, I don't

necessarily blame that on the RSS either. And frankly, even if it WAS

RSS-related, it'd be

treated the same way anyway.

I have no problems with answering questions from RSS teens, if they'd like.

-Sharon-

Just an RSS kid who grew up

Orlando FL

> What other parents out there have older children that are over the age of 13?

Also what

are their sizes now and what was their predicted sizes before meds? And what

medications

did you use if any? I would like to also see if maybe my teens could talk with

other teens

with RSS as penpals. Also would like to hear info from adult RSS on this.

> Thanks,

>

[Guest guest]

,

My son Max is 16.5 years old. He is about 5'2 " and weighs 107

pounds soaking wet. Max has been on GHT since he was 3. He had to

start because of unstable blood sugar and poor muscle tone. He was

also a terrible eater and it was hoped that it would help increase

his appetite. Without ght, by the way, he was tracked at about 4'8 "

final height. He is now predicted to be about 5'6 " , but we are

happy with whatever we get. He's still growing, though, so who

knows?

Max is a more complicated RSS " child. " He has had major dysmotility

issues, still had a g-j tube for feeding if he is sick (used to be

used 24 hours a day, then just at night for hypo-g), and we are

hoping that in the spring/summer we will be able to pull the tube.

Max also has anxiety, mild Tourette's, and some learning

disabilities. He is VERY friendly, relates well to adults and kids

who are a little younger than he, and can charm the socks off

anyone. He is creative and writes stories constantly. He is also

interested in acting as an extra-curricular activity. Max does take

a number of other meds that I don't usually list on here, but he

needs them to help him cope, feel well physically, etc.

I'm sure that Max would love to exchange emails with your son. They

are the same age, so maybe a friendship would develop. Wait -

didn't we once talk about this? Is your son the one who is really

physical and active? Maybe I'm wrong. Tell me more about him.

Jodi Z