How To Tell Your Child About Growth Hormone

[Guest guest]

Hi Everyone

I'm looking for everyone's advice. will be going to her second

endo visit in December at which time I believe we will be discussing

growth hormone with him. sometimes says things like she wants

to be big like so and so and I tell her that if she keeps eating good

she will. I'm now feeling that I need to change what I say because

pretty soon someway somehow I'm going to have to tell her that she

needs these shots to help her. Do I need to start telling her what is

going on about her height? I always tell her what each doctor is for

such as her cardiologist takes care of her heart and her ped makes

sure she gets better when she is sick but since we only had one endo

visit it doesn't come up much. I'm not certain or sure what I need to

say or do. I guess its a tough position for any parent because you

don't want to put so much emphasize on their size but yet how do you

prepare them for having to get these shots on a daily basis? I know

most of the kids start growth hormone at 2 but she is going to be 5!

One other quick question. When was at the ped's office

yesterday for a sick appointment we put her on the scale. She had her

pants, shirt and socks on but no shoes and weighed 30 3/4 pounds. How

much of a deduction do you think there would be for her clothing?

Thank you

B

4 3/4 RSS and Kelli 2 Non RSS

[Guest guest]

,

When was 4 1/2 and we decided to start growth hormone, we

decided as a family (grandparents, etc) that we needed to be upfront

with her; however, we also decided that she was too young to be

involved in the actual decision making. We already knew that she

talked about wanting to be taller, not wanting everyone to keep

picking her up.

We simply told her that she was born with a disorder called

Silver Syndrome. We showed her photos of other kids with RSS, and

talked to her about how some kids all have blonde hair, or others

have brown eyes, kids with RSS all have large foreheads like hers,

and heads that are bigger than their bodies. It seemed to make

sense to her. And these kids are also all small. That summer we

took her to her first MAGIC convention, and that sealed it! She

loved meeting other kids just like herself.

We also explained to her that kids with RSS need MORE food to grow

than her friends to. We explained that just like Mommy's car takes

more gasoline to drive from our house to the school compared to

Daddy's car that takes a little bit of gas, some kids need more food

to be able to grow and play each day than other kids.

And that for kids to grow in height, they need a certain type

of " gasoline " in their bodies called growth hormone. GH is like her

gasoline. And her body needs MORE gasoline to grow than her

friends. Because her body can't make more gasoline, we have to give

her more gasoline. And this is called growth hormone.

We use the Injectease which hides the needle. And we have given

her shot at about 11pm most nights for 4 years. Rarely does

she ever wake up.

I strongly advise using ELA-MAX or EMLA the first couple of times

( " magic cream " ) simply because it will numb the skin. The fact is

that the injections barely hurt, but the stress/anticipation can

make it work. Put the magic cream on about 30 minutes in advance.

Then gradually, several weeks later, you can slowly stop using the

magic cream.

Hope this advice helps you. Salem

>

> Hi Everyone

>

> I'm looking for everyone's advice. will be going to her

second

> endo visit in December at which time I believe we will be

discussing

> growth hormone with him. sometimes says things like she

wants

> to be big like so and so and I tell her that if she keeps eating

good

> she will. I'm now feeling that I need to change what I say because

> pretty soon someway somehow I'm going to have to tell her that she

> needs these shots to help her. Do I need to start telling her

what is

> going on about her height? I always tell her what each doctor is

for

> such as her cardiologist takes care of her heart and her ped makes

> sure she gets better when she is sick but since we only had one

endo

> visit it doesn't come up much. I'm not certain or sure what I

need to

> say or do. I guess its a tough position for any parent because you

> don't want to put so much emphasize on their size but yet how do

you

> prepare them for having to get these shots on a daily basis? I

know

> most of the kids start growth hormone at 2 but she is going to be

5!

>

> One other quick question. When was at the ped's office

> yesterday for a sick appointment we put her on the scale. She had

her

> pants, shirt and socks on but no shoes and weighed 30 3/4 pounds.

How

> much of a deduction do you think there would be for her clothing?

>

> Thank you

>

> B

> 4 3/4 RSS and Kelli 2 Non RSS