Human Growth Hormone Deficiency

[Anonymous]

Anonymous wrote:OP here. DD wasn’t premature. She is coordinated and surprisingly strong for her small frame. She has very little body fat so doesn’t really fit the profile in that regard. But she was very late to get teeth and hasn’t lost too many. A couple teeth have been missing for 6-9 months with no sign of the permanent teeth yet. So that fits. She was tested for different hormone levels and so far, all have been okay. Her doctor wrote and said some results won’t be back for a week or so and she will follow up then.

hmmm. My 10-year old son had slow growth years 2-4. The endocrinologist wouldn't test him---just monitored his growth.

He was missing his front teeth for an entire year before they grew in. He is slow to lose teeth. He has stabilized around 35-40% growth. He was 75-80% at 18 months.

The thing is, his older brother who is always big for his age still hasn't lost all of his teeth even at 13. He also loses teeth slow.

I just wanted to add that the teeth thing by itself is not a worry.

Of course, you have other issues going on--but I didn't want others to worry.

[Anonymous]

OP here. I really appreciate all the advice and experiences. DD’s endo says she in the 3rd percentile in height and less than 1st percentile in weight. Her bone age is 2.1 years delayed. A complicating factor is that constitutional growth delay runs in DH’s family which can explain the low hormone levels too. Unfortunately by the time one is confident in that diagnosis (e.g DD gets her period at age 16), it’s too late to intervene. Studies I’ve read show that medicating an otherwise healthy child is not advised and can have long term consequences (higher risk of cancer and stroke) not found in kids who are truly HGH deficient. We are not sure yet where DD fits. Some doctors and parents are uncomfortable with the wait-and-see approach in cases like ours. Others are more conservative. I don’t think either is wrong. It’s a tough decision and feels like we are playing blackjack with our daughter’s future. That’s why I’m gathering lots of opinions, processing, and anxious to learn more from experts who can guide us.

BTW, DD loves being small and mighty. She’s confident and happy in her skin.

[Anonymous]

We had complicated cases in our family (multiple factors going on and challenging to parse) - so feel for you. At the end of the day, it's a personal decision. One thing to note, make sure you test for celiac. I think most endocrinologists do now. We know of cases where parents take them to the endo, and they find out as part of the work up that it was celiac with no symptom other than growth. If there are any abdominal issues at all (sometimes kids don't let on) would go to GI also. You could still have growth hormone issues separate to that - but would want to make sure that is ruled out especially as its becoming much more common.

[Anonymous]

Anonymous wrote:OP here. I really appreciate all the advice and experiences. DD’s endo says she in the 3rd percentile in height and less than 1st percentile in weight. Her bone age is 2.1 years delayed. A complicating factor is that constitutional growth delay runs in DH’s family which can explain the low hormone levels too. Unfortunately by the time one is confident in that diagnosis (e.g DD gets her period at age 16), it’s too late to intervene. Studies I’ve read show that medicating an otherwise healthy child is not advised and can have long term consequences (higher risk of cancer and stroke) not found in kids who are truly HGH deficient. We are not sure yet where DD fits. Some doctors and parents are uncomfortable with the wait-and-see approach in cases like ours. Others are more conservative. I don’t think either is wrong. It’s a tough decision and feels like we are playing blackjack with our daughter’s future. That’s why I’m gathering lots of opinions, processing, and anxious to learn more from experts who can guide us.

BTW, DD loves being small and mighty. She’s confident and happy in her skin.

I don't think you can go by this. This would likely change in a few years when she realizes that she needs a cushion and pedal extenders to drive (to say nothing of having to pull the seat right on top of the airbag), is still shopping in the children's department at 20, is having to climb shelves or ask others for help just to do grocery shopping, has her face at everyone else's armpit/butt level on public transit, and is dating men 2 feet taller who put their foot in their mouths and awkwardly ask her if she has a genetic disorder that could impact their kids. Being petite is one thing, being able to be classified as a dwarf is quite another. The world is not friendly for adults who are 4'3". Unfortunate, but true.

[Anonymous]

I'm one of the PPs whose 13 year old is currently taking hormones. One of the considerations for us was that my DS really wanted the hormones. Ae he turned 13, many of the kids in school are surpassing him by leaps and bounds and he really stands out. He wants to be in the mix (keep in mind he will end up still being pretty much the shortest boy - its just now he really looks 8 or 9, instead of a teenager).

Maybe at 11, your DD isn't interested and is self confident - mine was too at 11, but when others grow, at least for boys, that can be very hard.

[Anonymous]

We just met with endocrinologist last week for 13 year old son. Parents tall and he was about 50% of height but has fallen to 19% and only grown 1.5 inches in 19 months. Typical at 13 1/2 is 2-3 inches a year. They ran test and only one hormone bit low. Bone age one year behind but Endot wants to read test hersel- results were from local doc and she is going to get X-ray.
Once bones fuse- no chance to help so we are fast tracking our decision based on that. If younger, think I would get couple opinions and have growth monitored over two 6 month periods- then endoc with X-ray and blood can give you predict asult height. If that is not reasonable based on genetics- say I’m 5”7 and husband 6’1 and kid shows max height 5”9, then yes, we would proceed.
We would not intervene unless we felt medically he was not meeting his expected height. For our son, biggest flag is lack of growth over 18 months. However, they base a lot of this on size of tedticles to determine where in puberty and our son at 1 on scale 1-5 so we feel like he is just late bloomer probably.
Again, doc is reviewing bone age again and if it is as immature as testes, then time will work. If bone age closer to actual age and blood work borderline, we will do an all day in lab blood testing that insurance requires - that will ultimately decide.
Good doc should make decision path very easy. We didn’t feel like there were that many variables at end of day to decide.

[Anonymous]

Anonymous wrote:We just met with endocrinologist last week for 13 year old son. Parents tall and he was about 50% of height but has fallen to 19% and only grown 1.5 inches in 19 months. Typical at 13 1/2 is 2-3 inches a year. They ran test and only one hormone bit low. Bone age one year behind but Endot wants to read test hersel- results were from local doc and she is going to get X-ray.
Once bones fuse- no chance to help so we are fast tracking our decision based on that. If younger, think I would get couple opinions and have growth monitored over two 6 month periods- then endoc with X-ray and blood can give you predict asult height. If that is not reasonable based on genetics- say I’m 5”7 and husband 6’1 and kid shows max height 5”9, then yes, we would proceed.
We would not intervene unless we felt medically he was not meeting his expected height. For our son, biggest flag is lack of growth over 18 months. However, they base a lot of this on size of tedticles to determine where in puberty and our son at 1 on scale 1-5 so we feel like he is just late bloomer probably.
Again, doc is reviewing bone age again and if it is as immature as testes, then time will work. If bone age closer to actual age and blood work borderline, we will do an all day in lab blood testing that insurance requires - that will ultimately decide.
Good doc should make decision path very easy. We didn’t feel like there were that many variables at end of day to decide.

Hmm. You are t comfortable having him be the height of the average American male? Is this for sports or cosmetic reasons?

I ask because I’m a 5’4 3/4”woman with a 6’2” brother, 5’9” and 5’8” sisters. My dad 6’1” , mom 5’7”.

So, yes, I am a lot shorter than the rest of my family, but still average for a US woman.

I guess I’d really have to be very certain about risks for and against over a mere inch or two over normal height.

[Anonymous]

I need to ask DH about his deceased parents, as DH is the tallest in his family.

[Anonymous]

Try the special needs forum. You’re more likely to find parents with relevant experience.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP here. I really appreciate all the advice and experiences. DD’s endo says she in the 3rd percentile in height and less than 1st percentile in weight. Her bone age is 2.1 years delayed. A complicating factor is that constitutional growth delay runs in DH’s family which can explain the low hormone levels too. Unfortunately by the time one is confident in that diagnosis (e.g DD gets her period at age 16), it’s too late to intervene. Studies I’ve read show that medicating an otherwise healthy child is not advised and can have long term consequences (higher risk of cancer and stroke) not found in kids who are truly HGH deficient. We are not sure yet where DD fits. Some doctors and parents are uncomfortable with the wait-and-see approach in cases like ours. Others are more conservative. I don’t think either is wrong. It’s a tough decision and feels like we are playing blackjack with our daughter’s future. That’s why I’m gathering lots of opinions, processing, and anxious to learn more from experts who can guide us.

BTW, DD loves being small and mighty. She’s confident and happy in her skin.

I don't think you can go by this. This would likely change in a few years when she realizes that she needs a cushion and pedal extenders to drive (to say nothing of having to pull the seat right on top of the airbag), is still shopping in the children's department at 20, is having to climb shelves or ask others for help just to do grocery shopping, has her face at everyone else's armpit/butt level on public transit, and is dating men 2 feet taller who put their foot in their mouths and awkwardly ask her if she has a genetic disorder that could impact their kids. Being petite is one thing, being able to be classified as a dwarf is quite another. The world is not friendly for adults who are 4'3". Unfortunate, but true.

In elementary school those ‘small and mighty’ kids teased me for being tall and I was ashamed of being tall. As an adult I’m pretty darn pleased with it all.

A doctor was speaking with my mother about a treatment that they were considering for an issue I had as well, stating that he didn’t think it was a good idea because it might ruin my ability to have kids. Of course I said okay, go ahead as I don’t care about having kids. Now as an adult I definitely care !

Do not go by what kids say in the least. They are relying on you to use your adult decision making skills, believe me.

[Anonymous]

Anonymous wrote:

Anonymous wrote:We just met with endocrinologist last week for 13 year old son. Parents tall and he was about 50% of height but has fallen to 19% and only grown 1.5 inches in 19 months. Typical at 13 1/2 is 2-3 inches a year. They ran test and only one hormone bit low. Bone age one year behind but Endot wants to read test hersel- results were from local doc and she is going to get X-ray.
Once bones fuse- no chance to help so we are fast tracking our decision based on that. If younger, think I would get couple opinions and have growth monitored over two 6 month periods- then endoc with X-ray and blood can give you predict asult height. If that is not reasonable based on genetics- say I’m 5”7 and husband 6’1 and kid shows max height 5”9, then yes, we would proceed.
We would not intervene unless we felt medically he was not meeting his expected height. For our son, biggest flag is lack of growth over 18 months. However, they base a lot of this on size of tedticles to determine where in puberty and our son at 1 on scale 1-5 so we feel like he is just late bloomer probably.
Again, doc is reviewing bone age again and if it is as immature as testes, then time will work. If bone age closer to actual age and blood work borderline, we will do an all day in lab blood testing that insurance requires - that will ultimately decide.
Good doc should make decision path very easy. We didn’t feel like there were that many variables at end of day to decide.

Hmm. You are t comfortable having him be the height of the average American male? Is this for sports or cosmetic reasons?

I ask because I’m a 5’4 3/4”woman with a 6’2” brother, 5’9” and 5’8” sisters. My dad 6’1” , mom 5’7”.

So, yes, I am a lot shorter than the rest of my family, but still average for a US woman.

I guess I’d really have to be very certain about risks for and against over a mere inch or two over normal height.

She’s in the 3 percentile - she could end up being 4’5” tall.

[Anonymous]

What is involved in the treatment, assuming it's a growth hormone deficiency? Shots every day for how long?

[Anonymous]

Anonymous wrote:

She’s in the 3 percentile - she could end up being 4’5” tall.

Third percentile height for women is 4' 11", actually.

[Anonymous]

Both my kids were treated for Growth Hormone Deficiency. For my oldest, it seemed the right course. For my youngest, I had concerns as her blood levels (IGF-1) were quite high and the Dr. was not monitoring properly. She is 17 now, and her hands are very large for her size. I am concerned that Dr did not manage her dosage properly.

My advice would be to get multiple opinions. and if you do proceed with GH treatment, make sure you see the lab work yourself. That was my big mistake. I trusted the MD was making sure IGF-1 levels were normal and she wasn't. She would just tell me everything was ok and I didn't question her until it was too late.

Also, you may want to talk to the Magic Foundation, a nonprofit to help parents navigate these issues. I wouldn't trust them 100% as they are funded by drug companies, and their panel of experts has a vested interest in this stuff. But it might help you sort things out.

[Anonymous]

"it sends a message that she is sick and needs treatment"

- way better message than "there was something wrong with you, it would have been upsetting, and because we were worried about your self-esteem, we missed the opportunity to do anything about it."