RE: RE: Growth Hormone in Females

[Guest guest]

hi

my daughter started much late r but the thinking seems to be theearlier the

dx is made the better. 4ft 9inches is below normal and sounds like she would

benefit from the injections. they have become a way of life and now at 17 (this

week) she is almost 5 feet and we are planning to continue until at least 5

foot 2 or 3. this would not have been possible had we not start4ed the growth

hormone. HEr appetite is good (weight is proportional 92 lbs) and she looks

small but not aabnormally so. There have been no side effects for us and her

dose

has been aggressive but not overly so. hope this helps marisa p.s. the shots

in conjunction with estrogen can bring on a normal puberty too!(development in

female etc...)

[Guest guest]

Kim-

I will be watching this line carefully. Aubrie, 7 yrs, is just barely

40 lb. At 5.5 yrs, I think she would've been about 's size. We

had our first endo appt last month and haven't talked to the dr yet

about results (phone tag). I would like to see Aubrie get growth

hormone treatments because it sure seems to me that she's lacking either

the hormone itself or the ability to use it properly. Our family is

tall and lean so her low weight is somewhat expected, but not the low

height. From other conversations here, there are many other benefits of

the hormone treatment -- muscle mass and tone for one, I don't recall

the rest.

Please keep us posted as you make this decision and proceed with .

Thanks-

Michele W

Aubrie's mom 7 yrs

>

[Guest guest]

erika is 9, 47 inches tall, and 55 lbs. her GI doctor told us based on her

" curve " she should be about 5'2 " . i havent seen any other issues yet besides

that she is starting to get " fuz " under her arms. this scares me, as she is

only9, i was 17 bfore I started puberty!

she has been on a lot of steroids for her RAD so this could be the reason

for the " fuz " under her arms. This is the only place she has it. I keep

wondering whether or not we should see an endo. dr.

cathie, mom to erika

[Guest guest]

hi again

she started growth hormone at about age 11. She was starting to really fall

off her own curve and not growing the 2 to 2.5 inches per year. She had the

stimulation test (2or 3 hour one) which showed she was clearly deficient so

there

was no decision to be made. She is solid as a rock with great muscle tone in

part due to the growth hormone. The estrogen therapy was more of a decision

but at 15 years old they did a bone density test and she was showing signs of

early bone loss so her endo was convinced that a very low dose of premarin (.3)

6x week would help that and also jump start her breast development and other

pubertal development. She was psychologically feeling bad that all the other

girls in high school had developed but not her so we knew it was time. It does

help and at least she feels more " normal " with her victoria secret presents

that she recieved for the holidays(lol). I think the right endo is important .

feel free to ask anything else. Marisa

p.s. watch the scolosis especially if you start growth hormone

[Guest guest]

We've seen the endo just once for an inital visit so I'm speaking a bit

early. But I'd say go. It can't hurt. I know it's exhausting just to

think about adding another specialist to your list, but there are so

many questions in this area. I think you might be relieved to get some

answers. Even if it turns out that there's nothing different they'd do,

at least you know that for certain. Remember, the " take-home message "

of the last conference was that all of the kids must see an endo -- and

starting as young as possible.

Michele W

NPTQueenie@... wrote:

> erika is 9, 47 inches tall, and 55 lbs. her GI doctor told us based

> on her

> " curve " she should be about 5'2 " . i havent seen any other issues yet

> besides

> that she is starting to get " fuz " under her arms. this scares me, as

> she is

> only9, i was 17 bfore I started puberty!

> she has been on a lot of steroids for her RAD so this could be the

> reason

> for the " fuz " under her arms. This is the only place she has it. I

> keep

> wondering whether or not we should see an endo. dr.

> cathie, mom to erika

>

>

>

[Guest guest]

At what age did you start her and how tall was she then? Thanks, Kim

Re: RE: Growth Hormone in Females

hi

my daughter started much late r but the thinking seems to be theearlier

the

dx is made the better. 4ft 9inches is below normal and sounds like she

would

benefit from the injections. they have become a way of life and now at

17 (this

week) she is almost 5 feet and we are planning to continue until at

least 5

foot 2 or 3. this would not have been possible had we not start4ed the

growth

hormone. HEr appetite is good (weight is proportional 92 lbs) and she

looks

small but not aabnormally so. There have been no side effects for us and

her dose

has been aggressive but not overly so. hope this helps marisa p.s. the

shots

in conjunction with estrogen can bring on a normal puberty

too!(development in

female etc...)

[Guest guest]

Go see the endo. They stressed this so hard at the last conference that

every Charge kid should see an endo. Growth is one of the main reasons

why, but there are other things as well, especially as they get older.

Christian Lobaugh

Husband to Ingrid, Father to (6) and (3 yr old Charger)

________________________________

From: NPTQueenie@...

Sent: Wednesday, January 12, 2005 8:24 AM

To: CHARGE

Subject: Re: RE: Growth Hormone in Females

erika is 9, 47 inches tall, and 55 lbs. her GI doctor told us based on

her

" curve " she should be about 5'2 " . i havent seen any other issues yet

besides

that she is starting to get " fuz " under her arms. this scares me, as

she is

only9, i was 17 bfore I started puberty!

she has been on a lot of steroids for her RAD so this could be the

reason

for the " fuz " under her arms. This is the only place she has it. I

keep

wondering whether or not we should see an endo. dr.

cathie, mom to erika

[Guest guest]

My daughter just turned 3 and has been on Growth Hormone for about a

year now (Genetropin). It was been good for her, mostly from a height

perspective. She is still small, but at least she seems to be following

the curve now. We're hoping she may even catch back up a little, but

it's too early to tell.

Be aware that Growth Hormone and Hormones given to effect puberty are

totally different issues. It's easy to get them confused, and try to

tie it all together, but you're better off thinking of them as 2 totally

unrelated subjects. With , she is on Growth Hormone to help her

growth (because she does not create enough of this naturally) but when

she gets near puberty age, we will start looking at whether we need to

use hormones to delay, or jump start puberty (the onset of puberty has

an effect on how tall a person will grow. Sometimes they delay puberty

to try to allow them a change to be a little taller. Sometimes they

need to start it with Charge kids because it doesn't start on it's own).

Growth Hormone given to someone who is deficient has shown to be an

extremely safe therapy (no side effects that I'm aware of). It's

effectiveness will depend on the given situation. If the underlying

issue is a Growth Hormone deficiency, then it should help. There are

reports in the Charge community that it helps with muscle tone and

strength as well, but for us, I can't really say (this has increased for

, but whether it's more than it would have without the Genetropin is

hard to say)

From the parents standpoint, it's quite a change because your talking

about giving your child a shot daily until your child is finished

growing (or can give it to themselves). It's similar to being a

diabetic and needing insulin shots daily. You get used to it after a

while though, and the shots really don't hurt much (the needles are tiny

- same kind they use with insulin)

I personally don't see any down side to having your child do Growth

Hormone Therapy if your endo feels it's indicated, other than

administering the therapy.

Hope this helps,

Christian Lobaugh

Husband to Ingrid, Father to (6) and (3 yr old Charger)

________________________________

From: Gilbert, A.

Sent: Tuesday, January 11, 2005 4:29 PM

To: CHARGE

Subject: RE: Growth Hormone in Females

Quick question to all the many experts out their in the field (parents).

I've seen a lot of information on growth hormone injections for boys

(micro penis and testes issues) but not much on the girls. I am aware

that under the CHARGE diagnosis there tends to be retardation in growth.

My daughter - age 5 1/2 is 37 " tall and weighs 30 pounds. The

endocrinologist is following her for short stature. She is expected to

be about 4' 9 " on her current growth curve. It is being suggested that

we might want to start her on growth hormone injections or IGF1

hormones. Have any on you had any experience with growth hormone

injections in your daughters at such an early age? What has the growth

rate been (success rate)?

Meg - what is your experience in this area with the children you've

seen? What are the draw backs or side effects from the hormone therapy?

Any information or suggestions is greatly appreciated.

Thanks, Kim Gilbert, Orlando, Fl.

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7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

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contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

________________________________

[Guest guest]

Yes! All CHARGErs should be followed by an endo. Yes it is to follow or

watch their growth, to deal with issues of puberty, to keep their bones healthy,

and.....!

Patty doesn't have osteoporosis yet but has osteopenia which is the beginning

of it. We didn't know that until we went to the endo.

Going to an endo is one of the most important things for our children.

Bonnie