grandson

[Guest guest]

hello my grandson is 13 yrs old this year 4ft 9in. and very skinny-i

have never found any information about teenage boys w/rss. He has not

been affected as some children have been w/rss althogh he does have

the large head for body ratio,small pinky fingers,very very

skinny,abnormal leg length. He is very strong and determined not to

let these things hold him back in life. i do know that he is kidded

alot by his peers so he compensates by being the class clown.his

grades are a constant battle for his parents -he also has been

diagnosised with add/adhd,dyslexia. anyway i wanted to know if anyone

else out there has a teenage boy with rss? thanks for listening kind

of long.

[Guest guest]

Hi Guitarman!!! There are several moms of teenagers on this

listserve, and MAGIC has a penpal group, and if your grandson is

interested, we could hook him up via email with a couple other boys

that are teenagers, same age as your grandson or around there (12-

15). Most come to the convention July 22-25th, and hang, swim,

gossip, do whatever it is teens do. This year a family did a

fundraiser in honor of one of our RSS teen boys, , and

so we used the money to rent a ping pong table and some other games

like that, and we got a room at the convention at night for JUST

teenagers, no parents. They have their own room away from the

little kids to hang and play. Would love to meet your grandson, do

you live anywhere near Chicago?

Salem

> hello my grandson is 13 yrs old this year 4ft 9in. and very skinny-

i

> have never found any information about teenage boys w/rss. He has

not

> been affected as some children have been w/rss althogh he does

have

> the large head for body ratio,small pinky fingers,very very

> skinny,abnormal leg length. He is very strong and determined not

to

> let these things hold him back in life. i do know that he is

kidded

> alot by his peers so he compensates by being the class clown.his

> grades are a constant battle for his parents -he also has been

> diagnosised with add/adhd,dyslexia. anyway i wanted to know if

anyone

> else out there has a teenage boy with rss? thanks for listening

kind

> of long.

[Guest guest]

Hi Guitarman,

My son Colby, who has RSS, is also 13 and is 4' 9.5 " . He weighs 73

pounds. How much does your grandson weigh? Colby was on Periactin for a

short time to help him gain weight but he didn't like it when his thighs

got " fat " according to him. He is pretty much a computer gamer so he is

not involved in sports much. He does take Karate twice a week, but is

not very aggressive. He is trying to come out of his cocoon but it is

taking time. Karate is about kicking but he won't do it during a

sparring match. I think he is worried about hurting the other kids. As

far as being picked on by others, Colby suffers his share, especially

since going into middle school. However, this past year it did get

better. Don't be surprised if you don't find out that our kids can dish

it out as well. I didn't understand why Colby would point out other

people's issues when he had his own, but his principal assured me that

this can is not unusual in that kids compare and then try to point out

ways in which they are better. I guess that way it helps them feel that

hey are not at the bottom of the food chain or whatever.

Anyway, he has a mid case of RSS in my opinion. He was born at 3#12 oz.

and 16.25 " . How about your grandson? Do you know his birth stats? Colby

has been basically healthy except for the fact that he had several ear

infections as a baby. He goes to ish Rite once a year for bone age

x-rays and to watch the asymmetrical difference in his legs. He just had

a visit last week and they are saying his bone age is 3 years behind and

that the difference in leg length actually decreased by 1 millimeter.

Did you have any specific questions that I might be able to help with/

Regards,

grandson

hello my grandson is 13 yrs old this year 4ft 9in. and very skinny-i

have never found any information about teenage boys w/rss. He has not

been affected as some children have been w/rss althogh he does have

the large head for body ratio,small pinky fingers,very very

skinny,abnormal leg length. He is very strong and determined not to

let these things hold him back in life. i do know that he is kidded

alot by his peers so he compensates by being the class clown.his

grades are a constant battle for his parents -he also has been

diagnosised with add/adhd,dyslexia. anyway i wanted to know if anyone

else out there has a teenage boy with rss? thanks for listening kind

of long.

[Guest guest]

My son Maxwell is just about to turn 16. He is about 5'1 " and

weighs 104 pounds. Like your grandson, Max has ADHD and learning

disabilities. He is in mostly replacement classes in high school,

but does take some mainstreamed classes and is well-liked by

students and teachers. It's " funny " that you talked about the class

clown part. I think Max uses that tact to " fit in, " too.

Max has a more involved case of RSS. He has a lot of gut

dysmotility problems and they are, at times, difficult to deal

with. I mean that for us, his parents, and for him. I don't think

he has a day where he feels well all day long. But he is learning

to deal with it. I'm so glad that he is becoming more self-

sufficient and independent.

If your grandson would like to email a fellow RSS friend, please let

me know. Max loves to be on the computer and to email people. He

may not say a lot, but he does write.

Tell us more about your grandson. We'd love to hear about him -

and where do you live?

Jodi Z.