Parents Growth Hormone Deficiency

[reg5poppy]

My DD has been diagnosed with Growth Hormone Deficiency and I have searched the forums and the only information I can find is several years old. I would like to know if anyone has had a daughter with GHD and had them treated with growth hormones. Or if they were diagnosed and you chose NOT to treat them. Really, I am looking for any information at all.

My DD does not want to take the hormones as she is concerned about how they will affect her gymnastics. Obviously, her health is more important but she has no issues other than being short. She has no other health issues that often go with GHD. With the hormones, she should see 5'. Without them, she will be 4'6" - 4'7". Additional information - she just completed level 8 and does hope to compete college gymnastics one day.

I would love to hear of anyone with personal experience in this and how it impacted your DD's gymnastics. I would love to be able to reassure her!

 

[duyetanh]

How old is she?

 

[reg5poppy]

How old is she?

Almost 12.

 

[txgymfan]

Not gymnastic related but my sister and cousins were some of the first kids in the country to get the shots as children 30 plus years ago. They think it gave one guy cousin several inches and he still ended up about five feet tall. It did not interfear with his hockey. My sister was a cheerleader and it gave her an inch or two. Asked if I would get them too and was told no. I ended up almost 5'3 and taller than most women in my family. I laugh when people call these shots new, they have really been around for a long time.

 

[Eleven sol]

My son (not my gymnast although she was tested) was diagnosed with this condition at a year and a half of age. He has been treated since that time. He got significantly stronger and healthier once he started taking the injections, and I didn't realize until he started taking the injections he wasn't as healthy as he could be. He also grew a lot and quickly; if the injections are going to work, kids will sometimes catch up to their height potential in a years time. From my understanding some kids will not go through puberty properly if you don't treat. And for some there can be cardiac issues or brittle bones later in life. Your daughter is on the late side being diagnosed so her window if you decide to treat is pretty short. I would gather maximum information ASAP to help you make your best decision. I would recommend checking out GHD/Growth Hormone Deficiency Parent support group on Facebook. There is a ton of information on there that helped me. I remember being shocked at the initial diagnosis. Hang in there.

 

[Eleven sol]

My son went from off the chart, below the 1st percentile, to the 95th percentile. His deficiency was severe and his Dad is tall. Good luck!

 

[duyetanh]

If the hormones help her get to 5 feet, I vote hormones...the world is a kinder place to those five feet and higher. And being five feet isn't going to wreck her gymnastic career....now 6 feet? Perhaps.

 

[raenndrops]

Not gymnastic related but my sister and cousins were some of the first kids in the country to get the shots as children 30 plus years ago. They think it gave one guy cousin several inches and he still ended up about five feet tall. It did not interfear with his hockey. My sister was a cheerleader and it gave her an inch or two. Asked if I would get them too and was told no. I ended up almost 5'3 and taller than most women in my family. I laugh when people call these shots new, they have really been around for a long time.

My little cousin was getting the shots back in the mid-80s. It helped him grow. H2 started the shots when he was 3 and took them until he was 12 (once he was near the 50th percentile for height and weight - based on mother and father heights, he should have been higher, but it was good enough).

 

[Aussie_coach]

I would consider it. I am 5 feet tall and even at 5 feet a lot of things are not build for my height. Below this height would be very difficult.

It is certainly not too tall for gymnastics. But her gymnastics career may span until her early 20's but she has to be able to live her life after that.

The first two decades of life are supposed to be about learning and preparing in order to reach your potential in the decades that follow. Making a desicion to keep her small now so she can be a college gymnast is going to have far reaching consequences.

 

[B&M's mom]

One other thing to consider, cars are designed for people over 5'. When my daughter starting driving, she was about 4'9". She could not see over the steering wheel even with the power seat all the way up. She had to have a cushion in order to drive. That put her too close to the airbags. I was fearful about her getting into an accident. She did finally grow and is now 5'2" and can drive without the cushion.

 

[MyBoysFlip]

If they are diagnosing and offering the treatment- it is because it is needed. My son has always been at 2% on the curve but that is his place and has been tested multiple times for GHD and always comes back normal so no treatment offered or required.

 

[Eleven sol]

Also check out the Magic Foundation. It is another good source of information.

 

[tomtnt]

actually, if you are so far off the normal curve even if your GH levels come back normal, you may be eligible for GH treatment..... However, two caveats - the curves are based on Caucasian children and there isn't as much research on the safety and efficacy of GH on kids with normal level of GH who happens to be small...

My DD is small - but my wife is tiny and I'm not exactly a giant either. She was way off the growth curve but her GH levels were normal... We were offered GH treatment but chose not to go through with it due to the relative scarcity of research on using GH in kids without deficiency..

 

[GYM0M]

Same here. We were given the choice bc of DD's height. We elected against it bc it would strictly be for cosmetic reasons. She is in the <3%, but she has a normal growth curve. She's just short. I'm 5'1, Dad 5'5. I'm the tallest of my sisters. His sisters are about my height as well.....

 

[profmom]

My offspring just grow slowly -- we went through the entire rigamarole of testing with eldest because he was dropping off the charts as a young teenager. Kept monitoring but no treatment. His growth plates at 16 looked like those of a 13 year old. He's now 18, 5'7", and still growing. My daughter, who was often off the charts and would top out at around the 8th percentile after a "growth spurt," is now catching up to and passing her friends. We still don't know for sure where they will end up -- their dad is 5'10" and I'm 5'6", but both grandmothers were under 5'3" in their 40s and my dad was almost 5'6" at his tallest. Not relevant to OP's situation at all, but hopefully some reassurance for those with children whose growth doesn't follow those charts all that well.

I would just make sure that whatever practice is managing her treatment has a very good reputation and does not press treatment on all kids. I do think that there's a significant physical and societal advantage to getting over that 5' threshold.

I also think that, no matter how passionate a child is about something at age 11, one has to be pretty careful about making long-term life choices on that basis. I am not, after all, an internationally renowned heart surgeon today.

 

[reg5poppy]

actually, if you are so far off the normal curve even if your GH levels come back normal, you may be eligible for GH treatment..... However, two caveats - the curves are based on Caucasian children and there isn't as much research on the safety and efficacy of GH on kids with normal level of GH who happens to be small...

My DD is small - but my wife is tiny and I'm not exactly a giant either. She was way off the growth curve but her GH levels were normal... We were offered GH treatment but chose not to go through with it due to the relative scarcity of research on using GH in kids without deficiency..

Yes, DD has never been "on the chart" but had always followed her natural curve. She started falling off of her curve and that is when her doctor wanted her to be seen by an endo. He monitored her for awhile and she continued to fall off and he wanted to test her for GHD. Since her dad and I are both rather short I was actually shocked that she is deficient. I did not expect it.

 

[Eleven sol]

So as others are pointing out, being short and GHD are two very different things. It was confusing for us because I am 5'1" with my whole family being short but 5' or above and my husband is 6'2" with his whole immediate family being very tall.

The GHD runs in my husband's family, not mine. Among all the very tall people in his family, every once in a while there was a person under 5'. This of course wasn't remembered until after my son was diagnosed. It pops up every once in a while, and can skip a whole generation even. My family is consistently short but 5' and up. Initially we thought our son took after my family but when he dropped off the growth curve- like your daughter -he went through the all day blood test and an MRI. It was seen on the blood tests and in his case, on the MRI with a small pituitary gland. It is not always able to be seen on the MRI.

My daughter went through the initial tests as well but her hormone level was fine--she is just short-growing in line with her curve.

The point being that GHD and family height are completely independent of one another. But it gets tricky when your family happens to be short anyway. Basically the tests are the way to tell.

In theory the growth hormones should make your daughter even stronger, which should be great for gymnastics. My son is a little muscle man. But yes it should also increase her height.

 

[Eleven sol]

This is just my two cents so take it for what it is worth. My daughter is nowhere near the level of your daughter in gymnastics nor will she ever be... but she is about the same age. After watching my son go through it all, if my daughter was diagnosed, I would treat my daughter in a heartbeat. My son is much stronger because of the treatment. But I totally freaked out when he was diagnosed and the first few months of injections were beyond hard. But it gets easier.

 

[gymbeam]

Out of curiosity, I decided to a google a bit about GHD after reading this thread because I am not familiar with it. I found it interesting that size isn't the only thing affected by the deficiency and the additional symptoms would steer me toward treating if I were in the position of having to make that decision for my child. One article said:

"Reduced bone strength is another symptom of AGHD. This may lead to more frequent fractures, especially in older adults. People with low growth hormone levels may feel tired and lack stamina. They may experience sensitivity to hot or cold temperatures. Adults with AGHD typically have high levels of fat in the blood and high cholesterol. This isn’t due to poor diet, but rather to changes in the body’s metabolism caused by low levels of growth hormone. Adults with AGHD are at greater risk for diabetes and heart disease."​

What I'm not clear on, though, is the difference between GHD and AGHD. Is AGHD just untreated GHD in adults, or is it completely different and only when GHD is acquired in adulthood?

Best wishes navigating this. Lots to consider for sure. Hugs!

 

[reg5poppy]

Out of curiosity, I decided to a google a bit about GHD after reading this thread because I am not familiar with it. I found it interesting that size isn't the only thing affected by the deficiency and the additional symptoms would steer me toward treating if I were in the position of having to make that decision for my child. One article said:

"Reduced bone strength is another symptom of AGHD. This may lead to more frequent fractures, especially in older adults. People with low growth hormone levels may feel tired and lack stamina. They may experience sensitivity to hot or cold temperatures. Adults with AGHD typically have high levels of fat in the blood and high cholesterol. This isn’t due to poor diet, but rather to changes in the body’s metabolism caused by low levels of growth hormone. Adults with AGHD are at greater risk for diabetes and heart disease."​

What I'm not clear on, though, is the difference between GHD and AGHD. Is AGHD just untreated GHD in adults, or is it completely different and only when GHD is acquired in adulthood?

Best wishes navigating this. Lots to consider for sure. Hugs!

Thanks! My understanding is that everyone begins to slow down their growth hormone production as we age but some adults will stop making it altogether. This would be Adult Growth Hormone Deficiency. Pediatric Growth Hormone Deficiency in children can have other issues that go along with it also but in my daughter's case, she is just short. Her endo told me that she would be on the growth hormones until she reached her adult height which would be 5' - 5'1". They would then check her again as an adult and if she is not producing GH then they will recommend she continue through adulthood but her growth would not be affected at that point. He also told me that she would grow leaner (weird, because she has no body fat) and stronger. There is a window of time that the GH would help her to grow in inches and that window closes at about 16 for girls, sometimes earlier depending on when they begin menstruation. I think they stop growing 2 years after menstruation begins.