Hilary or any other RSS adult

[Guest guest]

My son is 3 with RSS. We will have to make a choice about GH. My

question to you is, If you could go back in time and make the

decision your self, whould you take GH? The reason I ask is, there

are no long term studys on the effects of GH. and all the GH

manufaturers have a line that says in a small percentage of cases

LEUKEMIA was reported but they don't know if it had anything to do

with GH. Would you, actually having RSS, take the chance of the

potential health risks to be taller? I have to make a decision for

my son and want to hear from you guys, because you know how if feels

to have RSS, you know what its like to be smaller. Again it makes me

so happy to hear how well you are doing, What would you do?

[Guest guest]

Would you, actually having RSS, take the chance of the

potential health risks to be taller?

I know that you asked for RSS adults to reply to this post, but your

question made me think that you are only considering GHT for height. Some of

us use it for reasons other than just adding inches. We chose to use GHT for

mainly because it will help increase his muscle tone, and improve

his overall health. We are, also, hoping that with the increased muscle tone

we will improve his insulin resistance, and lessen his hypo-g episodes.

is still below the line on the RSS boys height chart, so he's

shorter than the average RSS male. Height was a concern for us, but not our

main concern. I, also, think that height is more of an issue for boys then

it is for girls. My son, now 22, was teased relentlessly in school for being

short. During his last growth spurt he attained a final height of 5'8 " /5'9 " ,

and the teasing stopped for the most part, but before that he was shorter

than most of the boys. My daughter is 24 yrs old, and is only 4'10 " tall.

Still she didn't have to endure nearly as much teasing as my son. Short is

just more acceptable for girls.

Pat (g-ma to , RSS, 35 months, 23.9#, 32.2 " , G-Tube)

[Guest guest]

Hi i'm kim another rss adult,like hillary (and others) i did not have gh

treatments /synthetic material gh was not available then. being a kid takes the

great weight of decision making off us /thats what parents are for,he!he! since

i can remember i've had a needle phobia so i didnt want gh because of that.

however looking back i had a great childhood although being small i didnt have

to get injections and visits to docs etc. My personal view on gh etc is that

nobody is perfect and being small isnt the worst problem a person could have,my

parents instilled in me to have confidence and a strong character and even

though i have bad,depressed moments i dont regret not having gh. but i do agree

with anna that if a boy needs gh i would be more inclined to look to the gh

treatments as in todays society males with growth disorders have more issues in

social and work environments. I feel a kid with rss can be REALLY content and

even though small, can do ok, I never had gh or feeding tubes

etc and was alot lighter and skinnier than some of the rss kids i saw in

america and my parents coped and i had a fairly 'normal' childhood but had i

have had to get gh i would then have become a sick kid with issues and frequent

injectons and doc visits rather than a kid who is happy but just happens to be

smaller than normal, if feeding teams and tubes etc where around when i was

younger i think my parents would have used them as the area of feeding was a

real struggle and stress inducing labour of love as i was growing up. I'm so

pleased that you value our rss adults) experience and opinions even though at

the end of the day its your decision but i suppose we are the voice of your

child in years to come. I hope that some of the rss men are reading these posts

and will offer some male perspective for you as you have a son. i hope that my

rambling has helped you a bit,being a parent of an rss child is not an easy job

by any means but as you can see from us adults the job is Sooo

rewarding and we grow up ,maybe not very tall, to be happy, social and make

positive contributions to our families and communities.

sledkaiser wrote:

My son is 3 with RSS. We will have to make a choice about GH. My

question to you is, If you could go back in time and make the

decision your self, whould you take GH? The reason I ask is, there

are no long term studys on the effects of GH. and all the GH

manufaturers have a line that says in a small percentage of cases

LEUKEMIA was reported but they don't know if it had anything to do

with GH. Would you, actually having RSS, take the chance of the

potential health risks to be taller? I have to make a decision for

my son and want to hear from you guys, because you know how if feels

to have RSS, you know what its like to be smaller. Again it makes me

so happy to hear how well you are doing, What would you do?

[Guest guest]

Despina-

I'm another " other " RSS adult <wink>. Like all who have answered before me, GH

was

never an option, as it wasn't available when I was young. On top of that, I

wasn't

diagnosed until I was 15 years old and, having gone through puberty at 11 or 12,

I was

pretty much done growing anyway and my plates were fusing.

Would I have taken it if it was available? I dunno. As everyone else said, it

was never an

option, so who knows what " would have/could have/should have " been. Being " the

kid, " I

don't think I would have had the final say anyway...my parents would. Going

strictly from a

height point of view, I think they would have been interested in it for me, just

because

living life as a " normal-sized " adult is just easier than a " compact-sized " one.

But if there

were/are possible side effects, then their final decision might have been

different. Again, it

was never in the cards for us, so who knows?

So here I am, an adult with untreated, relatively mild RSS. Am I a happy

person?

Absolutely. I'm an Occupational Therapist, I love my job and my boss leaves me

alone. I

have a terrific husband and great in-laws who aren't TOO meddling <wink>. I

have the

cutest poodle in the world, who, at 14, still thinks and acts like she's 4. We

have a roof

over our heads, we have enough money to do what we want to do (within reason).

And

you know what? NONE of those things have to do with my height, or lack

thereof...it just

doesn't come up much. Whereas the symptoms of my RSS were a HUGE factor in my

childhood, it's just an inconvenience now...I need stepstools and stepladders to

reach

things, I have a harder time finding clothes, shoes and cars that fit right and

I'm

perpetually cute (actually, I call it " terminally cute, " but I think I like

" perpetually cute "

better). There are people with MUCH worse problems in the world and I'm very

satisfied

with my lot in life.

-Sharon-

Just an RSS kid who grew up

38y, 8.75m

4'6.75 " , 97#

PS - At the hospital where I was diagnosed, they said you can get an idea of

what final

adult height would be, without RSS, by averaging together the height of each

parent,

grandparent and blood-related primary aunts and uncles. My father's family was a

bunch

of shrimps (4'9 " was the norm for the women, 5' for the men...no RSS...just a

family bush

instead of a family tree, I guess <wink>. Dad, BTW, was 5'8 " ...maybe the milkman

was

involved???) and mom's ran just below average (5'3 " for women, 5'8 " for men) and

it was

determined that I would've been a whopping 5'2 " without the RSS. So I was

destined to be

short anyway <grin>.

[Guest guest]

As your endo for more information about the Leukemia risk with GHT. I was

told when Adam started (4 years ago) that that was listed as a risk.

However, and it's a big however, the GHT-lukemia link was found in a bunch

of Japanese (I think it was Japanese, could be Chinese) children and it was

only reported there for one brief time period a number of years ago. In

fact, my endo told me that because not one single case had been linked to

GHT since then and it was isolated to one area that they figured 1. it was

caused by something other than GHT and 2. that that warning/possible effect

would be dropped from the warning list within the near future.

IF you are at all concerned ONLY because of that possibility, I urge you to

discuss it with your endo. to get more concrete information. (even explain

what I was told). I definitely felt it was not worth the worry considering

the 400% growth Adam has shown on the GHT.

Debby

Hilary or any other RSS adult

>

>

> My son is 3 with RSS. We will have to make a choice about GH. My

> question to you is, If you could go back in time and make the

> decision your self, whould you take GH? The reason I ask is, there

> are no long term studys on the effects of GH. and all the GH

> manufaturers have a line that says in a small percentage of cases

> LEUKEMIA was reported but they don't know if it had anything to do

> with GH. Would you, actually having RSS, take the chance of the

> potential health risks to be taller? I have to make a decision for

> my son and want to hear from you guys, because you know how if feels

> to have RSS, you know what its like to be smaller. Again it makes me

> so happy to hear how well you are doing, What would you do?

>

>

>

>

>

>

>

>

[Guest guest]

Hi, well i guess im lucky i managed to reach 5 feet without GH. If i

could go back and have the option of of being able to take it i

wouldn't, i had no problem being the smallest in my class! but i

could imagine it might be a little harder for a boy to deal with??

Good Luck thats a hard decision... Chantal 22 RSS

[Guest guest]

Hi,

Although I am not RSS (my son is), I am a short stature adult. And

if I had to do it all over again, yes I absolutely would take GH. I

am almost 5 ft tall.

Judith, Steve, (RSS) and (non RSS) 4 3/4 year old twins