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Re: Silly question

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Vicki,

Try a front hook bra and leave a couple of the bottom hooks unhooked.

A. B.

Lap 3/22/03

Dr. Steve Weinstein

Mobile Infirmary Medical

386-245-141lb

BMI 65/40

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  • 11 months later...
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,

GH is completely optional. It is a decision that each individual family must

make, based on their child. There are a lot of pros and there are some cons

also. However, my son is around LeeAnne's age and we have decided that it is

the best thing for Datreon, but there are also families on here who have opted

against it. I hope this helps, and I hope you get her home very soon!

le, mom to Datreon, RSS 18months, 16lb 2oz, 27in

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Hi ,

This isn't a silly question at all! When it comes right down to

it, it's a personal decision that each family makes for thier

child. There are so many more benefits for taking GHT other than

just gain in height. There is increased muscle mass making muscle

tone better, it also increases the amounts of sugars that the kids

can store so there is less hypo-g issues... this is just the start

of the benefits as I understand them.

As for not being GH deficient, that's just the way RSS kids are.

Ther are NOT GH deficient but their bodies use Growth Hormone

inificiently so they need a GH " boost " in order for them to grow.

Someone correct me if I've got it a bit wrong please!!!

For our personal choice we are not using GHT. Olivia has other

special needs that closes the door on GHT altogether. If not for

this I'm pretty sure that she'd be on it. We never gave it a whole

lot of thought.

Hope this helps some!

Leah, mom to 10 and Olivia 5, 19.5lbs, 34.5 " , RSS, OI

>

> HI everyone,

>

> We are still waiting, and waiting and, waiting..to get the call to

get

> our LeeAnn home.

>

> I am hoping for a non-flaming opinion on growth hormones. Are they

> necessary sometimes and not others? Is it completely optional?

What

> are the cons? The pros?

>

> I am completely confused about this. It seems like most kids are

on

> them but I have met a family who didn't. The mommy said that her

son

> was not hormone deficient.

>

> Thank you for your clarification.

>

>

> Mom to Patty, 5 (autism)

> Reagan almost 4

> 3

> , almost two

> And LeeAnn JeongYeon, still in Korea, 16 months RSS (13.6 lbs)

>

>

>

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Hi Jaimie,

To use or not to use growth hormone is a personal and sometimes a

medically driven decision. I was really on the fence about giving

Jillie GH. She has always been well nourished (courtesy of a

nasogastric tube from birth to 3 months old and then a GT) and looked

bigger than a lot of the other RSS kids I have had the pleasure of

meeting. She has an extra edge with both myself and my husband being

ultra tall. And despite being a NICU nurse in one of the best state

of the art high tech units in the country - I'm affectionately

referred to by my colleagues as a " crunchy granola " , being drawn to

nature and nutrition as a cure before traditional medecine.

When I went to see Dr " H " officially (vs at convention) for the first

time she was 23 months old. Dr " H " duly noted she was very well

nourished but strongly suggested she start GH that day. She told me

she had a severe form of RSS and was one of the weakest, most

hypotonic kids she had met. Jillie at that time could not crawl or

pull herself to standing. She couldn't even lift her head off the

floor from being prone. And it wasn't because she wasn't getting PT

and OT. She also had a such upper body weakness that she couldn't

pick her head up when she'd gotten herself into a weird position and

she would kink off her airway. GH, as well as helping with height,

contributes significantly to muscle development and strength. She

started it 10 months ago. She now crawls around the house with her

backpack on, pulls to standing and cruises furniture, takes a few

independant steps and can get up the stairs. It has made a tremendous

difference to her mobility and endurance. She even generally has

better lung volumes therefore doesn't need oxygen around the clock.

She is still SO hypotonic but it's all relative.

It's very personal. If Jillie wasn't so weak and medically

challenging, I may have not started her on the GH. There is no right

or wrong answer.

Of note, most RSS kids are NOT GH deficient, they are GH

INSUFFICIENT. This basically means they have a normal level of GH but

it is insufficient to stimulate normal growth and development in them.

Hope you get that phone call about picking up LeeAnn soon! Let me

know if you didn't get my private email with my phone #.

>

> HI everyone,

>

> We are still waiting, and waiting and, waiting..to get the call to

get

> our LeeAnn home.

>

> I am hoping for a non-flaming opinion on growth hormones. Are they

> necessary sometimes and not others? Is it completely optional?

What

> are the cons? The pros?

>

> I am completely confused about this. It seems like most kids are on

> them but I have met a family who didn't. The mommy said that her

son

> was not hormone deficient.

>

> Thank you for your clarification.

>

>

> Mom to Patty, 5 (autism)

> Reagan almost 4

> 3

> , almost two

> And LeeAnn JeongYeon, still in Korea, 16 months RSS (13.6 lbs)

>

>

>

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Guest guest

- Not a silly question. I just realized that it is past 11pm

so I need to go to bed. Will you write me privately and remind me

of your question? I can send you the data from the various

studies. Hopefully after 10 days of vacation in Hawaii, I will also

have the rest of the Guidebook's first draft finished! Then I can

send you that on GH! Jenn

>

> HI everyone,

>

> We are still waiting, and waiting and, waiting..to get the call to

get

> our LeeAnn home.

>

> I am hoping for a non-flaming opinion on growth hormones. Are they

> necessary sometimes and not others? Is it completely optional?

What

> are the cons? The pros?

>

> I am completely confused about this. It seems like most kids are

on

> them but I have met a family who didn't. The mommy said that her

son

> was not hormone deficient.

>

> Thank you for your clarification.

>

>

> Mom to Patty, 5 (autism)

> Reagan almost 4

> 3

> , almost two

> And LeeAnn JeongYeon, still in Korea, 16 months RSS (13.6 lbs)

>

>

>

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