Re: RSS/SGA Convention - RSS Adults-VERY LONG

[Guest guest]

Hi,

I feel like I need to share a couple of thoughts with you.

Most importantly my first comments are to the adults with RSS. I

think that all that I have seen and and met at the conventions are

fabulous!!! I have been to both adult session the past 2 years and

they have been the highlight of my weekend. You give me hope and

relief of the future for my son. You are all so funny and I love

hearing your thoughts and feelings. I wanted to let you know that I

appriciate you being at the convetion each year and I trully hope

you continue coming back in the future. It will not be the same

without you.

As for the debate on growth hormone, I think everyone has the right

to their opinion. With my child that has rss being a twin it makes

my choices different. Just as everyone has a unique situation and

which makes all of our choices different. You never know what you

would do in someone else's shoes because you are not in them. As a

parent I research the information that I have available at that time

and make the most informed dession I can with that information.

That is all that we can do. We don't know what they will discover

tomorrow. We do the best we can. I have 2 children that could

receive ght and I have made a individual dession to only start one

of my children on ght. Like others have said, there are other

reasons for growth hormone then just height. Coming from a short

person, being short is cool, but you have to be healthy as well.

It's an individual choice and I don't believe that either choice is

right or wrong or that anyone is bad or good for the choice they

make. We as parents make choices everyday that will effect our

children for the rest of thier lives and we do it to the best of our

abilities. We can't look back in judge our choices. It is what it

is.

le, mom to:

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

[Guest guest]

le-

As I said in my last message, my feelings have NOTHING to do with how the RSS

parents

have ever treated me. I know that many of them see me/us as a link to their

kids' future,

whether it's a 6-month-old who won't eat (neither did I and I still managed to

grow up) or

a kid whose parents have decided to not go the GHT route (I grew up without GHT

and am

a happy, well-adjusted person) or a kid who IS going through GHT but might still

wind up

short (you want adaptations? Let me tell you about adaptations...). The parents

have

ALWAYS treated us fine and honestly, it's kind of hard to complain when people

tell me

how funny and helpful I am <wink>. Well...as long as they don't tell me how

freakin' CUTE

I am, I can't complain. If I've taught y'all nothing else here, at least you

know that I don't

like being called " cute!!! " <wink>

My beef is with MAGIC and what they have to offer me in exchange for my

membership.

And again, it isn't even a huge beef...it's just been on my chest for a few

months and I

wanted to get it out.

Just for the record (and Kim and I have discussed this in the past), Kim and I

disagree on

whether or not " The Doctors " at the convention should take the time to see us. I

don't see

any reason why they should...we're not their patients and they can't help us. I

know their

priority is the kids and their time is chock-full as it is. I don't intend for

it to sound mean-

spirited, but I have little-to-no interest in meeting Dr. Harbinson and I doubt

she has any

interest in meeting me <wink>.

-Sharon-

Just an RSS kid who grew up

38Y,9M 4'6.75 " , 96#

Freezing her butt off in Orlando FL (but I bet if I froze my butt off, I'd lose

several more

pounds! <G>)

[Guest guest]

Kim what is this, " only rss adults have discovered this possible

unrecognized rss characteristic. " you are talking about, I would like to

know. My son is 3 and on periactin, no ght, and I don't know what I will do

about that in the future, Torn. What unrecognized characteristic are you

talking about?

Re: Re: RSS/SGA Convention - RSS Adults-VERY LONG

>

> Hey sharon I totally echo your post. i was hurt when know one bothered to

tape our panel,except me.as the parents seemed to find our segment so

moving,honest,humorous and informative without all the medical jargon or

endless advice about the decisions they make for their own kids. it does

seem to me that some people in rss division forget that as adults we know

more about life/living with rss than any medic!!!!! But maybe as we did not

take gh that doesnt help some parents, although i had a few parents asking

me about the possibilities of not using gh on their child although dr

harbison strongly recomended it /also feeding tubes when the child was doing

just fine ,if not as big as a 'normal' child should be. I have some issues

with dr harbison attitude which i have discussed privately with sharon.

Although i appreciate that dr h and dr stanhope etc where very busy at the

convention i was surprised and vexed and hurt, that nobdy took the

opportunity to speak to any of us adults to ask

> us about life with rss in adulthood without ght etc as this treatment is

not the be all and end all or the 'cure' for rss and i thought that as there

were 7 adults that the docs would have been walking over hot coals to get

first hand knowledge of living with rss from us as we are the future for

your kids(with or with out ght,feeding tubes etc) i will be renewing my

membership to magic but i too feel 'shortchanged as it were' as magic dont

seem to take much notice of rss adults or help us. we could prove to be an

invaluable resource for the rss kids of today. I am hoping to attend chicago

this year and as much i as i gained from meeting the rss adults(what a

privellege) maybe it will prove to be more advantageous for all attanding

than the, rss adults v everyone else in the division.for example, had us rss

adults not met and chatted informally we would not have discovered that many

of us have a similar health issue that is not even mentioned by the medical

rss experts and we would

> like more research into this finding as it may prove extremley useful for

the parents of young rss kids as only rss adults have discovered this

possible unrecognised rss characteristic. Sorry this post was ssooooo long

but sometimes i as others in the rss adults section get really frustrated

and need to get our feeling out as we have no doctors specifically for us to

talk to.

>

> sharonkurland wrote:

> Hi -

>

> " Why isn't there an RSS Adult division of MAGIC " is something that already

was discussed

> amongst us adults not very long ago (less than 2 months?). Hillary and

Steph, who have

> been involved with MAGIC a lot longer than the rest of us and have a more

" leader " role on

> the RSS-People board both said pretty much the same thing you did...if we

want to have

> that division, we have to make it ourselves. Which makes absolute

sense...it would be FOR

> us, so it should come FROM us. However to date, no one, myself included,

has volunteered

> to step forward. And if that's what we want, or in this case, DON'T want

to do, that's the

> way it is and life goes on, But I just feel...looked over, maybe?

unheard?...when MAGIC is

> willing to take our membership dues but can't even tell us " your

membership is really

> helping the kids and won't have a whole lot to do with you, because you're

not a kid

> anymore. " Or couldn't even be bothered to videotape our segment at the

2004 convention,

> which I think hurt the most of all. Granted, us adults are no Dr. Harbison

or Stanhope but

> if our topic was interesting enough to have all those caregivers come to

our segment, why

> couldn't we have been videotaped too, so other caregivers could have the

opportunity to

> learn what we had to say, if they so wished?

>

> I know that my self-imposed role with the parents here on the boards is to

be the " words

> of wisdom, " as an RSS kid who grew up. And I've gotten more than my share

of thanks

> from the parents, in person, on the boards, and in email...so I'm not

whining about that at

> all. But I got my MAGIC membership as a way to help ME because I have

RSS...not as a way

> to to give $30 to a charitable organization who, although very dedicated

to its children,

> doesn't give me, as an RSS adult, a whole lot in return.

>

> Please don't get me wrong...I'm not majorly upset about this or

anything...it won't stop me

> from renewing my membership or going to the convention in '05...but I just

felt I needed

> to get it off my chest.

>

>

>

>

>