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I think you have to take pen to paper and write down the pros and

cons for her height.

The studies I have recently read show NO difference for asymmetry

change with things like GH or puberty. So I think you can cross

that one off your list.

The fact is that she is beginning puberty within a normal age

range. So the primary reason you would be postponing puberty is to

get her extra height. (If she was 8 years old, you might postpone

also because who wants a pubertal emotional nightmare 8-year-old!).

But your daughter is within the normal age range for puberty to

begin.

For those of you who are unfamiliar, due to the delayed bone age and

unique growth pattern of the RSS/SGA child, puberty can be EVIL to

getting an RSS/SGA child taller. THe RSS/SGA child enters puberty

and suddenly their bone age rapidly accelerates, surpassing their

chronological age, and then slows down, and the growth suddenly

stops, far earlier than another " normal " child who started puberty

at the same time.

So.... you need to look at where your daughter is on the growth

charts right now (and look at an RSS child's growth curves), and

figure out where she might end up. SInce these growth charts were

for kids WITHOUT treatment.

I just took out the girls' growth chart RSS and plotted your

daughter. She is doing really good so far on GH. So what I did was

that I plotted her as if she now followed the RSS growth curve

(which is flatter during puberty than the normal child growth

curve). This is TOTAL GUESSWORK since I am not a doctor and don't

know your daughter's background. But I am guessing if you didn't

postpone puberty that her final adult height would end up around 149

cm??? (4'11 " ).

HELP! Does anyone else have the charts that you could double check

my work? I am assuming that she would NOT drop off and stop growing

at age 13, so I am making some assumptions here. But let's say

149. If you postpone puberty, that curve would show her at around

158cm? (5'2 " ).

So postponing puberty could get her an additional 3 inches? THat

sounds like a lot. I may be off here.

But I think that this is what you have to look at -- what

incremental height would postponing her puberty gain you. Your

doctor should be able to use these RSS growth charts and help you

better than I. Because he/she will also know your daughter's bone

age, and more accurately pinpoint it. Lupron has been around for a

very long time, and has had a lot of studies done on the safety of

it. So I think you are relatively OK with that issue. I am

unfamiliar with Zolodex.

Good luck with the decision!

> Hello, this is Milou from Holland. We still doupt if we have to

delay puberty with Lucrin (probably the same as Lupron).

> Maartje(rss)is 11 years and 4 months. She is 139 cm and her weight

is 28 kg. It seems that she begins starting puberty. She uses GH for

almost three years. She gets it from a special study(research)

which wants to prove that GH helps SGA children. The doctor advices

us to delay puberty for two years. We don't know what to do. We are

thinking of it all the time. We also spoke to an independent

endocrinologe.after that consult we had the feeling not to delay,

but still we doupt. We also wonder if delay puberty will have effect

on her asymmetry. there is a possibility that her right side, which

is shorter, will grow a longer time than her left side, so that she

will less assymetrie finally. if we delay puberty maybe we waste

this possibility.

> It's so difficult to make a decision, but we have to decide this

week. Who can give us more information and help us with this

decision ? three years ago it was also very difficult to decide to

start gh, but finally we knew what to do, but now we can't decide.

>

> greetings from Milou, mom of Maartje.

>

>

>

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Milou,

What is saying is correct and well-written. I do think you

should consider delaying puberty if you want that extra height, but,

as said, weigh the pros and cons before you decide.

As for Lupron vs. Zoladex, I can help there. My son Max was on

Zoladex for several years, but has now stopped taking it as he is 5'

at 15.5 years and his bone age is still a year delayed. Dr. H.

thinks that with Arimidex and gh, he will make it to at least 5'4 " .

We'll take 5'3 " and be ecstatic!

Back to L vs. Z. Basically, Lupron is an intramuscular injection

that must be given every 28 days. That is a shot that hurts and will

be sore for a couple of days after. Zoladex is a pellet that is

inserted in the abdomen every 86 days or so. A tiny incision is

made, using Emla cream first to numb the area (we applied it 4 hours

in advance), and then a preloaded syringe is placed in the incision

and a tiny pellet is released. The only after-effect is some minor

bleeding and maybe a bruise, but the bruise is not as sore as it

would be in the arm or leg.

I hope this helps you. If you have more questions about the Zoladex,

let me know. We loved using it.

Jodi Z

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Milou,

My daughter uses Lupron. There is a dose that is only given every 90 days.

She receives it by the doctor in her buttocks.

She has experienced minimal pain. Maybe 10 minutes sometimes only a minute.

She started GH and Lupron injections at the same time at age 11yr 8mos. As

of 11/03 she had grown almost 5 inches and her bone age is still delayed.

Hope this info helps.

( Elyse 13yr 7mos. 146.7cm 31kg as of 11/03)

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Hello ne, , Jodi, Kate and

Thank you for your responses ! You've all helped us a lot.

we didn't know there is a growth curve for rss children. I think it is

unknown here in Holland. So we were very happy that you looked up Maartje in

that curve.

We did make a list with the pros and cons and we have finaly decided to

postpone puberty. This morning we made an appointment with the doctor. Thursday

we will do the Lucrin test. Our doctor told us indeed that the vaccination is

painful, so we have to make us strong to help Maartje through this. Your help to

us is wonderfull. It was just that what we needed. Just to know that you

understand us and that you are thinking with us. Thank you !!!

with love, Milou, mom of Maartje

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  • 2 weeks later...

When you say that she has some signs of puberty, what do you mean?

Remember that adrenarche begins first -- so body odor, underarm

hair, pubic hair. Then as the body begins making estrogen (gosh I

hope I am getting this right) but then breast buds (girl) and

testicular enlargement (boys) begins, and this is actual puberty.

The bone age begins to advance rapidly during the onset and

continuation of puberty, and the actual " growing time " that normally

occurs during puberty is shortened for an RSS child. So final adult

height for an RSS child that is UNTREATED with GH should be plotted

on an RSS growth chart and NOT on a regular growth chart.

To truly determine if your daughter is entering puberty and not just

the adrenarche phase, a blood test should be run looking at LSH/FSH

levels (or some acronym like that). Your endo will know.

Depending on those levels, you can then decide if you should even

have a discussion about postponing puberty.

The fact is that the NORMAL range of onset of puberty is 10.5-14 yrs

or so for girls in general. So the fact is that your daughter is

within the normal range.

What you and your endo have to decide is where is she at RIGHT NOW

in height, and if she begins puberty now and you do not postpone,

where would this put her height, since her growing time will be

shortened. You can not use a normal growth chart, though.

I know this email isn't the perfect answer you are probably looking

for, but hope it gives you some insight. Salem

> Hello everyone,

>

> I've been a member for several years and have had the pleasure

of reading all the posts from all the RSS families. I was wondering

if anyone can help explain the whole delaying of puberty issue...

I'm concerned that my daughter may start her period sooner than I

would like and of course that would in turn affect her growth,

right? is 10 1/2 years old (51 inches and 47 lbs) and has

some signs of puberty and I have taken her in to see the

endocrinologist and they did a bone age (which they said was 6

months behind) so it was not recommended that she be placed on any

meds to delay puberty. Right now, they are predicting that her final

height will be around 5 feet. I guess I'm confussed... she could

start her period any time now but could it also be 1 or 2 years from

now? What does the bone age indicate? I've put in a call to her

endo but they are out of the office so I thought I would use my

other resources. Thanks for all your support and help.

>

>

> Revels

>

>

>

>

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, thanks so much for your response and it was very helpful. I

think I may understand a little more about it and now know what kinds of

questions to ask the endo. As far as the signs of puberty go, she has some

body odor, pubic hair and breast buds which have gone now. She went to the

endo in January but blood work was not done just a bone age which determined

her bone age to be about 6 months less than her actual age. I guess I first

need to determine what stage she is at right now and then go from there.

I've put in a call to the endo and am waiting to hear back so I'll ask my

questions then. Thanks for you help and wish me luck!

Revels

Re: Delay Puberty

> When you say that she has some signs of puberty, what do you mean?

> Remember that adrenarche begins first -- so body odor, underarm

> hair, pubic hair. Then as the body begins making estrogen (gosh I

> hope I am getting this right) but then breast buds (girl) and

> testicular enlargement (boys) begins, and this is actual puberty.

>

> The bone age begins to advance rapidly during the onset and

> continuation of puberty, and the actual " growing time " that normally

> occurs during puberty is shortened for an RSS child. So final adult

> height for an RSS child that is UNTREATED with GH should be plotted

> on an RSS growth chart and NOT on a regular growth chart.

>

> To truly determine if your daughter is entering puberty and not just

> the adrenarche phase, a blood test should be run looking at LSH/FSH

> levels (or some acronym like that). Your endo will know.

>

> Depending on those levels, you can then decide if you should even

> have a discussion about postponing puberty.

>

> The fact is that the NORMAL range of onset of puberty is 10.5-14 yrs

> or so for girls in general. So the fact is that your daughter is

> within the normal range.

>

> What you and your endo have to decide is where is she at RIGHT NOW

> in height, and if she begins puberty now and you do not postpone,

> where would this put her height, since her growing time will be

> shortened. You can not use a normal growth chart, though.

>

> I know this email isn't the perfect answer you are probably looking

> for, but hope it gives you some insight. Salem

>

>

> > Hello everyone,

> >

> > I've been a member for several years and have had the pleasure

> of reading all the posts from all the RSS families. I was wondering

> if anyone can help explain the whole delaying of puberty issue...

> I'm concerned that my daughter may start her period sooner than I

> would like and of course that would in turn affect her growth,

> right? is 10 1/2 years old (51 inches and 47 lbs) and has

> some signs of puberty and I have taken her in to see the

> endocrinologist and they did a bone age (which they said was 6

> months behind) so it was not recommended that she be placed on any

> meds to delay puberty. Right now, they are predicting that her final

> height will be around 5 feet. I guess I'm confussed... she could

> start her period any time now but could it also be 1 or 2 years from

> now? What does the bone age indicate? I've put in a call to her

> endo but they are out of the office so I thought I would use my

> other resources. Thanks for all your support and help.

> >

> >

> > Revels

> >

> >

> >

> >

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