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Re: RSS through the ages

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Hi Kate,

My 8 month old is thought to have RSS, thank you for your point of view.

We aren't faced with the decision of growth hormone yet, but it's in the

back of our minds. I would love to hear your story.... if you would like

to tell. My hubby and I haven't discussed GH, and our doctors won't

consider it till stops growing.

Thanks for tell us how you feel.. again... I would enjoy hearing your

story.

Pickett

greenwalrus1975 wrote:

> I'm not new to the site (just a new e-mail address), but reading all

> the past posts have got me thinking. Growing up in the mid 70's to

> early 80's having RSS we didn't have all the knowledge or know how you

> all have today. My mom would tell me how I would throw up after every

> feeding and how people would come up to her in the store and

> congratulate her for adopting a child from a 3rd world country. They

> assumed because I was so small and skinny that I was a malnurshed

> child. We didn't have feeding tubes or meds, in fact I was not offered

> growth hormones until the age of 12 ( I didn't take them). It just

> seems like with the knowledge comes alot more jobs to do and my hats

> off to all the parents out there. By the way, has anyone decided not

> to give growth hormones? It seems like most of the posts I read

> suggest alot of people have choosen the growth hormone route. I'm just

> curious. Kate

>

>

>

>

>

>

>

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Hi Kate. My 18 mo. old son, Brockton has RSS. I'm just wondering, as I'm sure

many of us are, how tall are you now and how much do you weigh? Personal

questions, I know! LOL I hope you don't mind! I haven't even considered the

possibility of growth hormone or anything else yet as Brocktons Dr.s haven't

even brought it up. I would love to hear more about you!

Thanks,

Jeanie (mom to 19.........as of yesterday! and Brockton 18 mo. RSS)

wrote:

Hi Kate,

My 8 month old is thought to have RSS, thank you for your point of view.

We aren't faced with the decision of growth hormone yet, but it's in the

back of our minds. I would love to hear your story.... if you would like

to tell. My hubby and I haven't discussed GH, and our doctors won't

consider it till stops growing.

Thanks for tell us how you feel.. again... I would enjoy hearing your

story.

Pickett

greenwalrus1975 wrote:

> I'm not new to the site (just a new e-mail address), but reading all

> the past posts have got me thinking. Growing up in the mid 70's to

> early 80's having RSS we didn't have all the knowledge or know how you

> all have today. My mom would tell me how I would throw up after every

> feeding and how people would come up to her in the store and

> congratulate her for adopting a child from a 3rd world country. They

> assumed because I was so small and skinny that I was a malnurshed

> child. We didn't have feeding tubes or meds, in fact I was not offered

> growth hormones until the age of 12 ( I didn't take them). It just

> seems like with the knowledge comes alot more jobs to do and my hats

> off to all the parents out there. By the way, has anyone decided not

> to give growth hormones? It seems like most of the posts I read

> suggest alot of people have choosen the growth hormone route. I'm just

> curious. Kate

>

>

>

>

>

>

>

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Hi! Just jumping in here....your dr. is way off if he thinks of not

doing gh until your daughter stops growing - that will be in many

years and probably too late! Emerence is just 3 but we hope to

start shortly and she is big compared to most kids here! I do know

of one family who debated from the time their daughter was 6 until

10 whether do go GH or not. Now the daughter wants it but she is

already 10 and entering puberty and her growth is stopping and now

they need to use Lupron in conjunction with Gh in order to get even

a bit of height...

However, the choice is very personal and everyone chooses what they

think will be best. My daughter has personality and is strong and

maybe she would be okay socially without having GH for height but I

want her to have GH for all the OTHER more important issues - reduce

fat to muscle ratio, decrease chances of hypoglycemia and hopefully

ward off insulin resistance and type II diabets.

Emerence is 3 and the oldest in her daycare class (she will move up

to the next class at 39 mo of age) but the smallest. Even today I

went to a birthday party for my 6 year old's friend. another mom

(who goes tot he same daycare but we rarely see each other)

said " oh,my son Sam is in Emerence's class - he says she is so

SMALL! " . Emerence meanwhile can control any child no matter waht

their size (Napolean complex maybe???? :)) But GH is for health

too, we are just waiting on the approval from the insurance.

> > I'm not new to the site (just a new e-mail address), but reading

all

> > the past posts have got me thinking. Growing up in the mid 70's

to

> > early 80's having RSS we didn't have all the knowledge or know

how you

> > all have today. My mom would tell me how I would throw up after

every

> > feeding and how people would come up to her in the store and

> > congratulate her for adopting a child from a 3rd world country.

They

> > assumed because I was so small and skinny that I was a

malnurshed

> > child. We didn't have feeding tubes or meds, in fact I was not

offered

> > growth hormones until the age of 12 ( I didn't take them). It

just

> > seems like with the knowledge comes alot more jobs to do and my

hats

> > off to all the parents out there. By the way, has anyone decided

not

> > to give growth hormones? It seems like most of the posts I read

> > suggest alot of people have choosen the growth hormone route.

I'm just

> > curious. Kate

> >

> >

> >

> >

> >

> >

> >

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My son is 8 1/2 yrs old and has never been offered growth hormones of any

type. He is now 4ft 1inch tall and weighs 3st 3lbs. (sorry my brain not working

well enough to convert today) He is fit and healthy and doing really well at

school. Although we do have problems with his diet he always eats plenty of the

limited foods that he eats. I am hoping he wont need gh but am open to it should

it become necessary in the future. You can see a pic of him in the folder

on the support website. Its always nice to hear about others that havnt had gh

seems to be one of the few who has never even been given it as an option.

Lizzy k mum to Jessie 10yr, 8 1/2yrs RSS, and a very large bump actually

due today.

greenwalrus1975 wrote: I'm not new to the site

(just a new e-mail address), but reading all

the past posts have got me thinking. Growing up in the mid 70's to

early 80's having RSS we didn't have all the knowledge or know how you

all have today. My mom would tell me how I would throw up after every

feeding and how people would come up to her in the store and

congratulate her for adopting a child from a 3rd world country. They

assumed because I was so small and skinny that I was a malnurshed

child. We didn't have feeding tubes or meds, in fact I was not offered

growth hormones until the age of 12 ( I didn't take them). It just

seems like with the knowledge comes alot more jobs to do and my hats

off to all the parents out there. By the way, has anyone decided not

to give growth hormones? It seems like most of the posts I read

suggest alot of people have choosen the growth hormone route. I'm just

curious. Kate

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Good Luck Lizzy!

Let us know what the bump is when it hatches.

Jody

I'm not new to the

site (just a new e-mail address), but reading all

> the past posts have got me thinking. Growing up in the mid 70's to

> early 80's having RSS we didn't have all the knowledge or know how

you

> all have today. My mom would tell me how I would throw up after

every

> feeding and how people would come up to her in the store and

> congratulate her for adopting a child from a 3rd world country.

They

> assumed because I was so small and skinny that I was a malnurshed

> child. We didn't have feeding tubes or meds, in fact I was not

offered

> growth hormones until the age of 12 ( I didn't take them). It just

> seems like with the knowledge comes alot more jobs to do and my

hats

> off to all the parents out there. By the way, has anyone decided

not

> to give growth hormones? It seems like most of the posts I read

> suggest alot of people have choosen the growth hormone route. I'm

just

> curious. Kate

>

>

>

>

>

>

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