Re: Scoliosis and growth hormone

[Guest guest]

Cas-

13 " !!! Wow! If growing pains are real-how did he ever cope?

(and ow on the pocketbook-as you pointed out)

in Ma.

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[Guest guest]

(age 22) is 5' 1 " (she's settled again, she can stretch out to 5' 2 " )

and 144 lbs. (a bit of a problem),

with no HRT. Shoe size 7 1/2 (fyi).

in Ma.

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[Guest guest]

-

I don't have any easy answers for you. 's endocrinologist was vigilant to

look for scoliosis because he was on growth hormone - because the accelerated

growth would make the scoliosis evident rapidly. The orthopedist looks at the

chart and notes is on growth hormone with a dour tone in his voice.

Certainly at this point we are having an active debate about stopping growth

hormone to lessen the risk of increased curvature.

No one gives me a straight answer about whether or not the curvature is inherent

in the growth itself or if it is actually aggravated by the growth hormone - and

I think it's because it's not known with certainty. Even the influences that

cause the curvature - is it the inherent knowledge, modifiable but not

unavoidable, or is it caused by condition? There are those who develop

scoliosis who do not have the muscle tone and other issues our children with

CHARGE have.

I will say this. 's hands and feet are particularly long, and I call them

Golden Retriever Puppy feet. The Endocrinologist acknowledges that this is

hallmark of growth hormone replacement therapy because there are so many small

bones in the hands and feet and each are responding to the medication. Yet

overall, does not look as though he has too much bone growth in other

areas. But in our endocrinologists tone I heard that the effect of hands and

feet is not what would have happened without the growth hormone replacement

therapy - which leads me to think that other things might not necessarily happen

with out the growth hormone replacement therapy.....

Of 's other school friends I know who have had scoliosis (one with surgery)

- no other conditions or causes overlap - for me there is some comfort in that.

Of the other young adults I have met with CHARGE who have had growth hormone

therapy, one appears perfectly proportioned. One seems overly lanky - but that

could be because of a low body weight.

Let me know what answers you find, and if you find better questions than the

ones I have so far )

The bottom line is growth affects scoliosis. Will the hormone replacement

therapy make that affect worse? What if your child never achieves the growth

without the replacement therapy? Would puberty also have an effect?.... I just

don't know.

Best,

Yuka

Scoliosis and growth hormone

We finally saw an endocrinologist and she says that could

benefit from Growth Hormone. My question is: will it affect her

scoliosis? I know there are several kids on her that have received

the hormone and also have scoliosis. I would appreciate some input,

as I know who the true " experts " are!

G

, CHARGE; 11 years old; 48 inches and 50 lbs (finally)

[Guest guest]

,

was actually smaller than at that age and that's when he was put on

GHT.

He's been on it for 5 years now and his scoliosis is actually better now that it

was then.

Is it because of the growth (he's now almost 5'7 " and 120 lbs) or better muscle

tone

I really don't know. But as I said, his endo keeps a close eye on it.

If you do put her on GHT I hope you guys like shopping... grew 13 inches

the first year on GHT, I was having to buy new shoes every couple months, which

was interesting as before we only had to buy new shoes about every 18 months.

Casey

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,

I can't speak for the scoliosis - however the growth hormones did work

wonderfully for Karlee. We should have started sooner that 13 years old.

When Karlee graduated from 8th grade she was the shortest in her class. Now as

a high school graduate she if 5 feet 51/2 inches. She weighs 120 pounds. She

wears size 10 shoes. ( I wear 7's) Her fingers are longer than mine.

You would never known she had been such a tiny girl.

from IL (Karlee 19)

Scoliosis and growth hormone

We finally saw an endocrinologist and she says that could

benefit from Growth Hormone. My question is: will it affect her

scoliosis? I know there are several kids on her that have received

the hormone and also have scoliosis. I would appreciate some input,

as I know who the true " experts " are!

G

, CHARGE; 11 years old; 48 inches and 50 lbs (finally)

[Guest guest]

Yuka,

Thanks for your reply. These are all issues that we have mulled

over. I am wondering if the growth hormone would help 's

strength? I know it will affect her scoliosis, but will her added

strength help her more than the risk of worsening the curve???????

Also, have you ever seen the brace made by SpineCor? Right now,

wears a " turtle shell " that is supposed to keep her from

getting worse. However, I feel that the curve is worsening

anyway...she has only gained an inch in the last year, but her pants

are about 3 inches shorter. That tells me that her body has

lengthend but her curve makes the height less. We see our ortho in

a month.

I also talked with about the possibility of taking shots every

day to make her grow better and she asked me if she could have a shot

tomorrow? So, I think she has noticed how little she is compared to

her friends. Of course, her 7 year old sister is about 4 inches

taller than she is

> -

>

> I don't have any easy answers for you. 's endocrinologist was

> vigilant to look for scoliosis because he was on growth hormone -

> because the accelerated growth would make the scoliosis evident

> rapidly. The orthopedist looks at the chart and notes is on

> growth hormone with a dour tone in his voice.

>

> Certainly at this point we are having an active debate about

> stopping growth hormone to lessen the risk of increased curvature.

>

> No one gives me a straight answer about whether or not the

> curvature is inherent in the growth itself or if it is actually

> aggravated by the growth hormone - and I think it's because it's

> not known with certainty. Even the influences that cause the

> curvature - is it the inherent knowledge, modifiable but not

> unavoidable, or is it caused by condition? There are those who

> develop scoliosis who do not have the muscle tone and other issues

> our children with CHARGE have.

>

> I will say this. 's hands and feet are particularly long, and

> I call them Golden Retriever Puppy feet. The Endocrinologist

> acknowledges that this is hallmark of growth hormone replacement

> therapy because there are so many small bones in the hands and feet

> and each are responding to the medication. Yet overall, does

> not look as though he has too much bone growth in other areas. But

> in our endocrinologists tone I heard that the effect of hands and

> feet is not what would have happened without the growth hormone

> replacement therapy - which leads me to think that other things

> might not necessarily happen with out the growth hormone

> replacement therapy.....

>

> Of 's other school friends I know who have had scoliosis (one

> with surgery) - no other conditions or causes overlap - for me

> there is some comfort in that.

>

> Of the other young adults I have met with CHARGE who have had

> growth hormone therapy, one appears perfectly proportioned. One

> seems overly lanky - but that could be because of a low body weight.

>

> Let me know what answers you find, and if you find better questions

> than the ones I have so far )

>

> The bottom line is growth affects scoliosis. Will the hormone

> replacement therapy make that affect worse? What if your child

> never achieves the growth without the replacement therapy? Would

> puberty also have an effect?.... I just don't know.

>

> Best,

>

> Yuka

>

> Scoliosis and growth hormone

>

> We finally saw an endocrinologist and she says that could

> benefit from Growth Hormone. My question is: will it affect her

> scoliosis? I know there are several kids on her that have received

> the hormone and also have scoliosis. I would appreciate some input,

> as I know who the true " experts " are!

> G

> , CHARGE; 11 years old; 48 inches and 50 lbs (finally)

>

>

[Guest guest]

Casey,

Thanks. That was part of my thinking, too, that the muscle strength

may actually help her...I would actually love to go shopping for

her! She is my one child that actually wears out her clothes and shoes!

Do they stay on GH for a long time???

> ,

>

> was actually smaller than at that age and that's when

> he was put on GHT.

> He's been on it for 5 years now and his scoliosis is actually

> better now that it was then.

> Is it because of the growth (he's now almost 5'7 " and 120 lbs) or

> better muscle tone

> I really don't know. But as I said, his endo keeps a close eye on it.

>

> If you do put her on GHT I hope you guys like shopping...

> grew 13 inches

> the first year on GHT, I was having to buy new shoes every couple

> months, which

> was interesting as before we only had to buy new shoes about every

> 18 months.

>

> Casey

>

> __________________________________________________________

> Bored stiff? Loosen up...

> Download and play hundreds of games for free on Yahoo! Games.

> http://games.yahoo.com/games/front

>

>

[Guest guest]

,

Wow, I remember when I saw Karlee at the Indianopolis conference!

How is her strength?

> ,

>

> I can't speak for the scoliosis - however the growth hormones did

> work wonderfully for Karlee. We should have started sooner that 13

> years old.

>

> When Karlee graduated from 8th grade she was the shortest in her

> class. Now as a high school graduate she if 5 feet 51/2 inches. She

> weighs 120 pounds. She wears size 10 shoes. ( I wear 7's) Her

> fingers are longer than mine.

>

> You would never known she had been such a tiny girl.

>

> from IL (Karlee 19)

>

> Scoliosis and growth hormone

>

> We finally saw an endocrinologist and she says that could

> benefit from Growth Hormone. My question is: will it affect her

> scoliosis? I know there are several kids on her that have received

> the hormone and also have scoliosis. I would appreciate some input,

> as I know who the true " experts " are!

> G

> , CHARGE; 11 years old; 48 inches and 50 lbs (finally)

>

>

[Guest guest]

,

He seems to have more 'growing pains' now that he's added terstosterone

than while he was on GHT only. and according to him 'growing pains'

really do exist.. heat helps (as it does with my osteoarthritis) ibuprophen

when it's really bad.

Case

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Same here with shoe size.. running joke around here is that

doesn't have feet he has skis.. he wears a size 10 1/2 and are real

narrow. m Dad and older brother only wear size 9.

Casey

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[Guest guest]

,

According to my endo he will be one GHT for the rest of his life, other endos

say til growth is achieved.. There is a great web page on GHT

www.magicfoundation.org it has a ton of info..

I got the contact from them from a friend that has a kiddo

with Septo Optic Dyplasia.

And boy do I remeber the clothes and shoe thing.. only kid of mine that EVER

wore out a pair of shoes or any clothes... Boy that was cheap (as my kids would

say)

" back in the day'

Casey

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,

Actually she is fairly strong - arms and legs.

but since she lacks semicirrcular canals she appears not to be (in a way)

from IL (Karlee 19)

Scoliosis and growth hormone

>

> We finally saw an endocrinologist and she says that could

> benefit from Growth Hormone. My question is: will it affect her

> scoliosis? I know there are several kids on her that have received

> the hormone and also have scoliosis. I would appreciate some input,

> as I know who the true " experts " are!

> G

> , CHARGE; 11 years old; 48 inches and 50 lbs (finally)

>

>