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Stopping puberty


Supertechmom
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If you have used hormones to stop a child entering puberty to maximize growth time, are you happy with the outcomes?  Wish you hadn't? Pros/Cons?  Endo is recommending supprelin or lupron if we want to go ahead and try. Her thoughts are it may or  may not give her any more growth but will at least keep her out of puberty for another year.   

 

Making decisions on whether to do so with my soon to be 11 year old girl.

 

Edited: 

 

***Please keep the postings to those who have actually been on this path, used hormones or made the decision not to for whatever reason when the time came.  We are past the stage where other opinions or stories are useful as we are now to the point of do this or not.  Thanks***** 

Edited by Supertechmom
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Hard decision since there is no certain outcome. It may or may not do what it's supposed to do and meanwhile the girl is subjected to artificial hormones. I would have to do a LOT of research to see what the long-term studies show, what the stats are like (make sure not conducted by a pharma co.), etc.

How tall is she? Would she be devastated if she didn't grow?

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No advice, but my DD12 is very small for her age (not even on the growth chart). Her pedi has expressed mild concern and run a few tests, but has never recommended stopping puberty as means to encourage growth. Interesting. I'll be listening in.

 

With that said, I doubt it is something I would do.

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My oldest dd was 4'11'' when she turned 12 and started puberty (on her birthday...).

 

She was barely 5'1" when she turned 13... she was 5'7" when she turned 16 (and stopped growing).

 

I personally grew 8 inches after puberty (at 9.5 years old)

 

I would so not do artificial hormones...

 

Edited to add-- this dd was FTT (failure to thrive) since birth.  Always on low end or off the low end of growth chart.  We had scans and the Drs said she was going to be '5 ft in heels'.  

 

Our middle daughter is 2 years younger and was taller than her 'big' sister by the time she was 18 months old.  Oldest dd was held back a year in school and still was the SMALLEST student in her grade (200 students).  We had concerns. 

 

DH has cousins who did hormone therapy and we did not want to go that route.  I'm 5'8" and SHORT for my family.  DH is 6'2" and tallish for his.

 

 

Edited by Jann in TX
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I am 5'0. Stopped growing at 12 years old. We are personally against ANY kind of medication that messes with hormones (including birth control).  My DD has a friend who is 4'9 at 16 years old. It really isn't that big of a deal except for being able to find pants that fit.

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How short is your DD? I agree with others that nearly 11 isn't abnormal for starting puberty so if the procedure has a good chance of NOT increasing growth why would you seek to delay puberty anyway? I feel I am missing a piece of the puzzle.

 

As for height, is she severely short? Most of the women in my family are shorter than 5' 3" and some are 4'9. Not a huge deal. Are you talking shorter than 4' 9"?

 

It would have to be a really compelling reason for me to even consider a course of action that might or might not have the desired end result but has the potential to actually do damage.

 

I don't have BTDT advice, though. Hopefully someone else does. Hugs to you as you navigate these waters.

Edited by OneStepAtATime
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Is the endo recommending intervention or is she just offering you the option? Is she monitoring your daughter's growth plates? I grew 7 inches after completing puberty, and we have decided to monitor - but not intervene - with our two children who have growth delays. But I'm not sure that this is a decision you can make based on anyone else's experiences. You really need to listen to what your endo is recommending based on your daughter's medical situation. If you are feeling uncertain, then I would strongly recommend seeking a second opinion from a different endo.

 

Personally, I would be very hesitant to delay puberty unless there was a clear and compelling medical reason to do so. It's just too big an intervention to make based on the possibility of additional growth. Primum non nocere. First, do no harm.

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Is the endo recommending intervention or is she just offering you the option? Is she monitoring your daughter's growth plates? I grew 7 inches after completing puberty, and we have decided to monitor - but not intervene - with our two children who have growth delays. But I'm not sure that this is a decision you can make based on anyone else's experiences. You really need to listen to what your endo is recommending based on your daughter's medical situation. If you are feeling uncertain, then I would strongly recommend seeking a second opinion from a different endo.

 

Personally, I would be very hesitant to delay puberty unless there was a clear and compelling medical reason to do so. It's just too big an intervention to make based on the possibility of additional growth. Primum non nocere. First, do no harm.

 

 

Endo said either way is fine though she would do the treatments.  The possibility of growth after puberty onset is pretty nil.  Generations of women who's adult height became their height upon onset of menses. Her bone scans have jumped over three years in 10 months.

 

I'm not doubting the endo.  Just wanted to hear from those  who have done this and how it worked out  as we have two options of treatments.

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Endo said either way is fine though she would do the treatments.  The possibility of growth after puberty onset is pretty nil.  Generations of women who's adult height became their height upon onset of menses. Her bone scans have jumped over three years in 10 months.

 

I'm not doubting the endo.  Just wanted to hear from those  who have done this and how it worked out  as we have two options of treatments.

 

That's a really big jump. As a mom in this same situation, it actually makes my blood pressure rise to think of such a quick jump. 

 

Do you generally find that your endo is on the more cautious side in terms of intervention? That would definitely influence how I viewed her advice. Our local endo's tend to be very, very cautious about recommending intervention. I have one friend who opted to do the shots to delay puberty, but her daughter has multiple disabilities. She has been happy with her choice, although it didn't result in additional growth for her daughter, but I'm not sure her experience applies to the average kid with growth delays. 

 

If it's a choice between the two treatment options, what does your endo recommend? Can she point you in the direction of research? 

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My dd had precocious puberty, started around age 6. We treated her with lupron. There did not seem to be many side effects, however, about a year before we would have stopped treatment ideally, her blood pressure became somewhat high and she had to stop taking it. Her blood pressure returned to normal after she stopped the medication. She has achieved a height of 5'2"

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 we have been offered growth hormone treatments for luna. i would think that would be a more effective treatment than delaying puberty. we have declined. we will not pursue treatment unless it becomes medically necessary (for heart or bone health or something else). if she had stayed at her stalled height or 26 inches for longer than a year, or if she stops growing completely again, we will revisit treatment options. our goal is to get her above 4 ft adult height. 

 

i would not delay puberty at almost 11. i was 10, and it was fine. i was 4'11 and i am now 5'1.

 

edit: at age 13, my growth plates had fully fused. not an official bone age scan, but i had adult bones. my doctors were confused. i had not grown in over 2 years. 

 

 

 

 

Edited by Desert Strawberry
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That's a really big jump. As a mom in this same situation, it actually makes my blood pressure rise to think of such a quick jump. 

 

Do you generally find that your endo is on the more cautious side in terms of intervention? That would definitely influence how I viewed her advice. Our local endo's tend to be very, very cautious about recommending intervention. I have one friend who opted to do the shots to delay puberty, but her daughter has multiple disabilities. She has been happy with her choice, although it didn't result in additional growth for her daughter, but I'm not sure her experience applies to the average kid with growth delays. 

 

If it's a choice between the two treatment options, what does your endo recommend? Can she point you in the direction of research? 

 

She is cautious.  This jump scared her a little because she didn't think it would happen.  But willing to make a case with our insurance to cover it because she does feel she could benefit from a year without puberty.   We're researched out.  It really is down to a "here's our point of something is to be done or not done"   No going back from this point.   Why I was wondering how it had helped others or had hurt them.

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 we have been offered growth hormone treatments for luna. i would think that would be a more effective treatment than delaying puberty. we have declined. we will not pursue treatment unless it becomes medically necessary (for heart or bone health or something else). if she had stayed at her stalled height or 26 inches for longer than a year, or if she stops growing completely again, we will revisit treatment options. our goal is to get her above 4 ft adult height. 

 

i would not delay puberty at almost 11. i was 10, and it was fine. i was 4'11 and i am now 5'1.

 

edit: at age 13, my growth plates had fully fused. not an official bone age scan, but i had adult bones. my doctors were confused. i had not grown in over 2 years. 

 

 

Her growth hormone has been fine. Once she was well, her growth has been very regular.   She just had such a deficit to overcome in height.   Delaying puberty is our last option to counter that deficit.  

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No advice, just hugs. I have a very petite 14 year old and I often wonder if we should have intervened. I am so sad for my daughter, and I feel a lot of guilt (and probably always will) for not intervening. However, I really don't know if that would've been the right thing to do or not anyway. I will probably always feel sad and guilty, but I might have felt that way if we had pursued a more aggressive approach too. Sigh...

 

I hope you are able to find some clarity in your decision. I know how hard it is.

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Endo said either way is fine though she would do the treatments. The possibility of growth after puberty onset is pretty nil. Generations of women who's adult height became their height upon onset of menses. Her bone scans have jumped over three years in 10 months.

 

I'm not doubting the endo. Just wanted to hear from those who have done this and how it worked out as we have two options of treatments.

Generations of women in your family who don't grow after the start of menses? Or are you making a generalization about women in general? Because I grew taller after the start of menses and so did my daughter and so did others on this thread. Obviously we can't say if your daughter will but I don't think that our experience is one in a million.

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 I have one friend who opted to do the shots to delay puberty, but her daughter has multiple disabilities. She has been happy with her choice, although it didn't result in additional growth for her daughter, but I'm not sure her experience applies to the average kid with growth delays. 

 

This is something I am considering for my SN child. I don't care about height but if she could go through puberty when she's the right functional age equivalent rather than at the typical chronological age, that would be so much better for her I think. She's been pretty consistently functioning about 2.5 to 3 years younger than her chronological age. So I think it would be far better for her to go though puberty at 14 (functional age equivalent of 11 to 11.5) rather than 11 (functional age equivalent of 8 to 8.5).

 

Unfortunately the statistics are that 80-90% of girls with multiple disabilities will be victims of s*xual abuse (including a much higher rate of s*xual assault) and a lot of it is getting taken advantage of. Their bodies mature way ahead of their ability to cognitively and emotionally understand. Delaying puberty would mean a better match between physical development and social-emotional development.

 

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Did the same doctor read all of the bone scans? Get a second opinion on the bone ages?

 

I ask as when we were doing this we had to be very specific about where they were taken and who read them to get the most accurate results.

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I got my period when I was 10.5 and continued to grow afterwards. I'm 5'2.75 and very happy with it.

 

Wouldn't this large jump in height for your DD indicate a normal growth spurt and be encouraging to you? Why do you think that she won't experience another growth spurt before her period?

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My grandmother was 4'11" and lived a good productive life. She had three children. She died at 93.

 

Not sure what's wrong with being short.

 

While I agree there's nothing wrong with being short (I am myself short), we have no idea how tall the OP's daughter is.  There is a HUGE difference between being very short and having dwarfism (pituitary/idiopathic/hormonal rather than genetic).  

 

We are in the middle of this journey with our 5 year old.  Luckily, she has made a huge leap in growth over the past year and while she is still years behind her peers, her growth velocity is higher than average for age, so in other words, she appears to be trying to catch up.  

 

We are at the beginning of this journey with our youngest as well.  He is also far, far, far behind normal.  At age 3, he is 24lbs.  (DD weighed 18lbs at age 3... SMALL).  Both these kids were born with clubfoot and while there is no named syndrome to link these two symptoms, we assume there is some syndrome-y thing going on.  Both are under the care of a wonderful endo.  

 

Anyway, to OP, I have no advice.  For my family, we've chosen to only work with hormones if there are health risks at stake.  But we are still at the stage where we are considering growth hormone, and both kids are in the normal zone, so even if we wanted hormones, they are a very tightly controlled drug where we live and would not be given.  This thread has taught me something new re: delaying puberty, and I'm happy to have that information in my back pocket in case we need it.  Thank you.  

 

 

ETA:  Sorry to go off on a tangent.  I just wanted to clarify for people who haven't dealt with growth issues that often times we are not talking bout 4ft11, we might well be talking about 4ft6, and there is a serious difference in terms of functioning in a world designed for average-heighten people.

Edited by Monica_in_Switzerland
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I have several patients who have taken Lupron and did well. They were slightly different scenarios (precocious puberty at a very young age and early puberty in a developmentallly delayed girl) but as far as the meds similar. Both were on them 1-2 years and did well with no major side effects.

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My grandmother was 4'11" and lived a good productive life. She had three children. She died at 93.

 

Not sure what's wrong with being short.

 

Exactly

 

My grandmother is that height and is currently still kicking at 90.  She had 4 kids.

 

I myself am barely over 5ft.  Sure sometimes I wish I were a bit taller when I have difficulty reaching something, but it hasn't really hindered me.

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My sister in law is 4'9". Several of my sisters are five foot or just below. I am only 5'3" on a good day.

 

I am petite, but there have been times being so short has impeded my sister in law's life. Even reaching 5 foot would have changed a lot of things for her. I know she's said many times she wishes growth hormones or something had been available.

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How tall is she?

4'8" 

 

Generations of women in your family who don't grow after the start of menses? Or are you making a generalization about women in general? Because I grew taller after the start of menses and so did my daughter and so did others on this thread. Obviously we can't say if your daughter will but I don't think that our experience is one in a million.

 

Yes, my family.  Didn't realize I left that out.    We tend to speed through puberty and our bones grow up.  I've been my height since I was 10.  I looked 18 at 12.  All of my aunts, sister, mother, and both grandmothers reached adult height once menses started.  I didn't even know people could grow after that. So not the norm in my family.  

 

Did the same doctor read all of the bone scans? Get a second opinion on the bone ages?

 

I ask as when we were doing this we had to be very specific about where they were taken and who read them to get the most accurate results.

 

Same doc, same testing place, second opinions agreeing with scans.

I have several patients who have taken Lupron and did well. They were slightly different scenarios (precocious puberty at a very young age and early puberty in a developmentallly delayed girl) but as far as the meds similar. Both were on them 1-2 years and did well with no major side effects.

Thank you.   That's what I wanted to know.

 

Her bone age did not create an increase in height unless you count reaching 4'8" .  The fact that her bones went from 10 years to 13 in 10 months shows that she sped through puberty decreasing any chance of future growth. Girls in general stop growing when their bone age reaches 13-14 years of age.  That bone age does not always correlate to physical age. The closer to 14 years her bones get, the closer she is to her final adult height.    Without intervention, at best, she is going to be 4'9". 

 

Again, nothing is wrong with short if that is your genetics.  It is not hers.  Thus the reason I asked only those who had undergone this path to respond.  It is not a short verses tall discussion. It is a help a child/give a child every chance to reach their potential.   We have been traveling this for more than a decade following a  child who's growth and development was stunted and harmed from a severe illness.  And never rebounded.  We are now at the point of intervening and possibly achieving a closer to potential height.  If she had never been sick, had no chronic illness, and was still 4'8" , we would not even have this discussion.    But, she was sick, she  had no growth for 2 years during the period of the most rapid growth besides the growth during puberty.    Thus, a different conversation is being had now.

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I got my period when I was 10.5 and continued to grow afterwards. I'm 5'2.75 and very happy with it.

 

Wouldn't this large jump in height for your DD indicate a normal growth spurt and be encouraging to you? Why do you think that she won't experience another growth spurt before her period?

 

 

Because she has already started her period, close to having her second, and blown through three years of bone growth in 10 months.  

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Obviously there are concerns for things like blood clots, but if your second opinions agree on this? I'd go for it. That is quite short for functioning, to be honest. I think it may even be below the threshold for short stature with social security disability.

http://www.disabilitysecrets.com/resources/disability/getting-disability-growth-impairment-or-growth

 

 

I believe it is.    I've already had one college admission where my son goes tell me if she  stays under 4'9" college could very free.  

 

OF course  what everyone forgets is in old age, 2- 3 inches of height is lost.

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4'8"

 

 

Yes, my family. Didn't realize I left that out. We tend to speed through puberty and our bones grow up. I've been my height since I was 10. I looked 18 at 12. All of my aunts, sister, mother, and both grandmothers reached adult height once menses started. I didn't even know people could grow after that. So not the norm in my family.

 

 

Same doc, same testing place, second opinions agreeing with scans.

Thank you. That's what I wanted to know.

 

Her bone age did not create an increase in height unless you count reaching 4'8" . The fact that her bones went from 10 years to 13 in 10 months shows that she sped through puberty decreasing any chance of future growth. Girls in general stop growing when their bone age reaches 13-14 years of age. That bone age does not always correlate to physical age. The closer to 14 years her bones get, the closer she is to her final adult height. Without intervention, at best, she is going to be 4'9".

 

Again, nothing is wrong with short if that is your genetics. It is not hers. Thus the reason I asked only those who had undergone this path to respond. It is not a short verses tall discussion. It is a help a child/give a child every chance to reach their potential. We have been traveling this for more than a decade following a child who's growth and development was stunted and harmed from a severe illness. And never rebounded. We are now at the point of intervening and possibly achieving a closer to potential height. If she had never been sick, had no chronic illness, and was still 4'8" , we would not even have this discussion. But, she was sick, she had no growth for 2 years during the period of the most rapid growth besides the growth during puberty. Thus, a different conversation is being had now.

There is a lot of information in this post that wasn't stated before. It makes it a lot easier to answer. With this information, I think it looks like a much better decision.

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4'8"

 

 

Yes, my family. Didn't realize I left that out. We tend to speed through puberty and our bones grow up. I've been my height since I was 10. I looked 18 at 12. All of my aunts, sister, mother, and both grandmothers reached adult height once menses started. I didn't even know people could grow after that. So not the norm in my family.

 

 

Same doc, same testing place, second opinions agreeing with scans.

Thank you. That's what I wanted to know.

 

Her bone age did not create an increase in height unless you count reaching 4'8" . The fact that her bones went from 10 years to 13 in 10 months shows that she sped through puberty decreasing any chance of future growth. Girls in general stop growing when their bone age reaches 13-14 years of age. That bone age does not always correlate to physical age. The closer to 14 years her bones get, the closer she is to her final adult height. Without intervention, at best, she is going to be 4'9".

 

Again, nothing is wrong with short if that is your genetics. It is not hers. Thus the reason I asked only those who had undergone this path to respond. It is not a short verses tall discussion. It is a help a child/give a child every chance to reach their potential. We have been traveling this for more than a decade following a child who's growth and development was stunted and harmed from a severe illness. And never rebounded. We are now at the point of intervening and possibly achieving a closer to potential height. If she had never been sick, had no chronic illness, and was still 4'8" , we would not even have this discussion. But, she was sick, she had no growth for 2 years during the period of the most rapid growth besides the growth during puberty. Thus, a different conversation is being had now.

With this additional info, I would probably try the hormones if it were my dd. To me the potential benefits would outweigh the potential risks.

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I agree with Arctic Mamma, there are concerns but if the doctor says yes I'd go for it. When dd was 8-9 her Doctor suggested that if she didn't have a big growth spurt soon we'd be looking at 4'9-4'10, Luckily she did grow but we would  have done what was needed.  In the end she got to almost 5 foot.

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4'8" 

 

 

Yes, my family.  Didn't realize I left that out.    We tend to speed through puberty and our bones grow up.  I've been my height since I was 10.  I looked 18 at 12.  All of my aunts, sister, mother, and both grandmothers reached adult height once menses started.  I didn't even know people could grow after that. So not the norm in my family.  

 

 

Same doc, same testing place, second opinions agreeing with scans.

Thank you.   That's what I wanted to know.

 

Her bone age did not create an increase in height unless you count reaching 4'8" .  The fact that her bones went from 10 years to 13 in 10 months shows that she sped through puberty decreasing any chance of future growth. Girls in general stop growing when their bone age reaches 13-14 years of age.  That bone age does not always correlate to physical age. The closer to 14 years her bones get, the closer she is to her final adult height.    Without intervention, at best, she is going to be 4'9". 

 

Again, nothing is wrong with short if that is your genetics.  It is not hers.  Thus the reason I asked only those who had undergone this path to respond.  It is not a short verses tall discussion. It is a help a child/give a child every chance to reach their potential.   We have been traveling this for more than a decade following a  child who's growth and development was stunted and harmed from a severe illness.  And never rebounded.  We are now at the point of intervening and possibly achieving a closer to potential height.  If she had never been sick, had no chronic illness, and was still 4'8" , we would not even have this discussion.    But, she was sick, she  had no growth for 2 years during the period of the most rapid growth besides the growth during puberty.    Thus, a different conversation is being had now.

 

I do believe that is a compelling medical reason to intervene. And it is a different situation than just short stature or delayed growth. I am pretty far on the "do not intervene" spectrum, but at 4'8" with growth plates about to close and knowing growth was stunted by an illness, I would personally opt for the intervention. 

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While I agree there's nothing wrong with being short (I am myself short), we have no idea how tall the OP's daughter is.  There is a HUGE difference between being very short and having dwarfism (pituitary/idiopathic/hormonal rather than genetic).  

 

We are in the middle of this journey with our 5 year old.  Luckily, she has made a huge leap in growth over the past year and while she is still years behind her peers, her growth velocity is higher than average for age, so in other words, she appears to be trying to catch up.  

 

We are at the beginning of this journey with our youngest as well.  He is also far, far, far behind normal.  At age 3, he is 24lbs.  (DD weighed 18lbs at age 3... SMALL).  Both these kids were born with clubfoot and while there is no named syndrome to link these two symptoms, we assume there is some syndrome-y thing going on.  Both are under the care of a wonderful endo.  

 

Anyway, to OP, I have no advice.  For my family, we've chosen to only work with hormones if there are health risks at stake.  But we are still at the stage where we are considering growth hormone, and both kids are in the normal zone, so even if we wanted hormones, they are a very tightly controlled drug where we live and would not be given.  This thread has taught me something new re: delaying puberty, and I'm happy to have that information in my back pocket in case we need it.  Thank you.  

 

 

ETA:  Sorry to go off on a tangent.  I just wanted to clarify for people who haven't dealt with growth issues that often times we are not talking bout 4ft11, we might well be talking about 4ft6, and there is a serious difference in terms of functioning in a world designed for average-heighten people.

 

This.

 

For clarity, anyone seeing an endo for growth delays is probably dealing with a child below the 3rd percentile. In many cases, they may be dealing with a child well below the 3rd percentile. Seriously, nobody here is ragging on short. I'm guessing most of us on this thread are short, and short is awesome. In situations like this, the monitoring (and any interventions) are in the hope of making it to 4'11". Nobody's trying to take a kid who is 4'11" and turn her into a basketball player.

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With the added information I would go with it.

 

We did not (for various medical reasons) and our DD ended up at 4'10". I almost wished we had gotten her to 5'. I think those 2 inches would have really helped her. She has a cognitive impairment and other health issues which compound it.

 

Other DD is 5' and while a few more inches would be nice, 5' is very liveable for her.

 

Our Endo said goal was 5'.....so treatment for these is not making kids go from 4'10 to 5'6" or more, it is to get them into the more functional adult height range.

 

We live in an area where at 5'5" tall I am SHORT for a woman. Most are 5'7+ and I have many many female friends that are 6' plus. Just the tall Dutch genetics in our area.

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Yes, with added info I would. It will let her drive more cars, reach into washing machines without needing a tool, reach cabinets, and find clothes. I'm 5'1 and think that's a perfectly normal height and kind of like being short. But that short would be a detriment. I'd do whatever the Endo thinks will help. 

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I don't have experience with stopping puberty, so maybe should not post?

 

But I wanted to just offer experience or support, as another who's had experience with Lupron. I had 8 mos of Lupron, and ... Well, it was quite an experience. If having a heads up from someone who's been there re: what to expect will help, OP, I will be happy to share.

 

My own experience - I don't regret it because I made the best choice I could, knowing what I knew. In the same position, I'd do it again, probably. It was a gamble. I didn't win, but glad I tried. Most of the time.

 

I think for the OP, it's a gamble, too.

 

Just weigh the potential side effects. Some are long term. I'd recommend talking to other parents who have opted for it, a few years out from the experience. Personally, I have some long term effects that are probably from Lupron. I'd want to be fully aware of those possibilities. (I was not, other than bone density issues, before doing it myself.)

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