Human Growth Hormone Deficiency

[Anonymous]

Anonymous wrote:I think it helps to distinguish between giving HGH because you have an HGH deficiency and giving HGH because you're just short (idiopathic short stature).

+1 My 12-year-old son has been receiving HGH injections for the past 2.5 years due to hypo-pituitarism. FWIW, he is now 75th percentile in height. Since his dad is 6'4" and I'm 5'10", he has a lot of genetic potential for height. The HGH has been relieving a lot of symptoms, and we are lucky to have it. Adults with growth hormone deficiency have a significantly shortened life span, and I expect that he will have to continue to take (low doses) of HGH throughout his years.

[Anonymous]

I am the one posting about our 13.9 year old son who is going thru testing. I do want to clarify there are those testing or considering HGH to get taller because they don’t want to be short. And those who are considering hormone treatment because of medical situation.
Or son was sent to endocrinologist beacause he has only grown 1.5 inches in 19 months. The average for his age is 2-3 inches a year so he has failed three 6month growth tests.
Since he’ll be 14 in October, the specialist is concerned about his lack of growth this late in the game. I’m 5 7 and my husband is 6 ft— so we are both fairly tall. We weren’t even really cognizant of problem— primary doc just noticed lack of growth reviewing his chart at physical and some low levels of hormone in blood test.
I don’t think he’ll qualify because expected height is still 5”9 but he meets the two other criteria- so we”ll know more after some all day blood draw (every 30 min while giving some drug to test for hormone)—end of the month.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I think it helps to distinguish between giving HGH because you have an HGH deficiency and giving HGH because you're just short (idiopathic short stature).

+1 My 12-year-old son has been receiving HGH injections for the past 2.5 years due to hypo-pituitarism. FWIW, he is now 75th percentile in height. Since his dad is 6'4" and I'm 5'10", he has a lot of genetic potential for height. The HGH has been relieving a lot of symptoms, and we are lucky to have it. Adults with growth hormone deficiency have a significantly shortened life span, and I expect that he will have to continue to take (low doses) of HGH throughout his years.

I haven't come across any research suggesting that HGHD impacts life span. Maybe HGHD that is caused by an underlying illness (e.g. tumor), but HGHD alone? Would you please share?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I think it helps to distinguish between giving HGH because you have an HGH deficiency and giving HGH because you're just short (idiopathic short stature).

+1 My 12-year-old son has been receiving HGH injections for the past 2.5 years due to hypo-pituitarism. FWIW, he is now 75th percentile in height. Since his dad is 6'4" and I'm 5'10", he has a lot of genetic potential for height. The HGH has been relieving a lot of symptoms, and we are lucky to have it. Adults with growth hormone deficiency have a significantly shortened life span, and I expect that he will have to continue to take (low doses) of HGH throughout his years.

I haven't come across any research suggesting that HGHD impacts life span. Maybe HGHD that is caused by an underlying illness (e.g. tumor), but HGHD alone? Would you please share?

Here is some information...

https://www.magicfoundation.org/Growth-Disorders/Growth-Hormone-Deficiency-in-Adults/

https://www.pituitaryworldnews.org/growth-hormone-deficiency/

[Anonymous]

OP here: I just heard back from DD’s team at NIH who recommend monitoring her every six months, but not pursuing hormone treatment at this time. Her bone age is further delayed than we thought - 3 years at this point. So at age 11, she has the bones of an 8-year-old. Her doctors think this is caused by a constitutional growth delay and likely insufficient caloric intake. We were referred to a dietician to make sure she gets the right nutrients to maximize her growth potential. It will be hard wrestling her to eat - I feed her snacks and full fat foods, but she takes two bites and says she’s full. But we are relieved that her hormones look fine. The low IGF1 is most likely due to her low BMI. Thanks everyone for sharing your thoughts and experiences. They really helped during this uncertain time of waiting.

[Anonymous]

Anonymous wrote:OP here: I just heard back from DD’s team at NIH who recommend monitoring her every six months, but not pursuing hormone treatment at this time. Her bone age is further delayed than we thought - 3 years at this point. So at age 11, she has the bones of an 8-year-old. Her doctors think this is caused by a constitutional growth delay and likely insufficient caloric intake. We were referred to a dietician to make sure she gets the right nutrients to maximize her growth potential. It will be hard wrestling her to eat - I feed her snacks and full fat foods, but she takes two bites and says she’s full. But we are relieved that her hormones look fine. The low IGF1 is most likely due to her low BMI. Thanks everyone for sharing your thoughts and experiences. They really helped during this uncertain time of waiting.

Thank you for the update! Glad you were able to get a fuller picture and an action plan. Good luck with the appetite. I know a lot of people joke (me included) about how I wish I had that problem, but when it's real it's very frustrating. I think the dietician will be helpful and it's always good for a kid this age to hear it and work with someone besides Mom and Dad. Who, you know, know nothing.

[Anonymous]

Anonymous wrote:OP here: I just heard back from DD’s team at NIH who recommend monitoring her every six months, but not pursuing hormone treatment at this time. Her bone age is further delayed than we thought - 3 years at this point. So at age 11, she has the bones of an 8-year-old. Her doctors think this is caused by a constitutional growth delay and likely insufficient caloric intake. We were referred to a dietician to make sure she gets the right nutrients to maximize her growth potential. It will be hard wrestling her to eat - I feed her snacks and full fat foods, but she takes two bites and says she’s full. But we are relieved that her hormones look fine. The low IGF1 is most likely due to her low BMI. Thanks everyone for sharing your thoughts and experiences. They really helped during this uncertain time of waiting.

That's good news, OP. There's a plan, and you're comfortable with it.

[Anonymous]

Anonymous wrote:OP here: I just heard back from DD’s team at NIH who recommend monitoring her every six months, but not pursuing hormone treatment at this time. Her bone age is further delayed than we thought - 3 years at this point. So at age 11, she has the bones of an 8-year-old. Her doctors think this is caused by a constitutional growth delay and likely insufficient caloric intake. We were referred to a dietician to make sure she gets the right nutrients to maximize her growth potential. It will be hard wrestling her to eat - I feed her snacks and full fat foods, but she takes two bites and says she’s full. But we are relieved that her hormones look fine. The low IGF1 is most likely due to her low BMI. Thanks everyone for sharing your thoughts and experiences. They really helped during this uncertain time of waiting.

Did they check her for gastroparesis? Eating a few/2 bites and being full would be a symptom.

[Anonymous]

Anonymous wrote:OP here: I just heard back from DD’s team at NIH who recommend monitoring her every six months, but not pursuing hormone treatment at this time. Her bone age is further delayed than we thought - 3 years at this point. So at age 11, she has the bones of an 8-year-old. Her doctors think this is caused by a constitutional growth delay and likely insufficient caloric intake. We were referred to a dietician to make sure she gets the right nutrients to maximize her growth potential. It will be hard wrestling her to eat - I feed her snacks and full fat foods, but she takes two bites and says she’s full. But we are relieved that her hormones look fine. The low IGF1 is most likely due to her low BMI. Thanks everyone for sharing your thoughts and experiences. They really helped during this uncertain time of waiting.

I would take her to a good GI to make sure something else isn’t going on. We had seen a team at NIH - with similarities to your story and they missed the root issues. Granted it was a complicated case - but often these are and have more issues beyond growth

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP here: I just heard back from DD’s team at NIH who recommend monitoring her every six months, but not pursuing hormone treatment at this time. Her bone age is further delayed than we thought - 3 years at this point. So at age 11, she has the bones of an 8-year-old. Her doctors think this is caused by a constitutional growth delay and likely insufficient caloric intake. We were referred to a dietician to make sure she gets the right nutrients to maximize her growth potential. It will be hard wrestling her to eat - I feed her snacks and full fat foods, but she takes two bites and says she’s full. But we are relieved that her hormones look fine. The low IGF1 is most likely due to her low BMI. Thanks everyone for sharing your thoughts and experiences. They really helped during this uncertain time of waiting.

I would take her to a good GI to make sure something else isn’t going on. We had seen a team at NIH - with similarities to your story and they missed the root issues. Granted it was a complicated case - but often these are and have more issues beyond growth

Some of those NIH doctors are very new and also very ‘head in the clouds’ - quoting the most research they have read but not considering that this child is having a problem that needs to be fixed immediately. Malnutrition from choosing not to eat is a big problem that needs to be fixed quickly.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP here: I just heard back from DD’s team at NIH who recommend monitoring her every six months, but not pursuing hormone treatment at this time. Her bone age is further delayed than we thought - 3 years at this point. So at age 11, she has the bones of an 8-year-old. Her doctors think this is caused by a constitutional growth delay and likely insufficient caloric intake. We were referred to a dietician to make sure she gets the right nutrients to maximize her growth potential. It will be hard wrestling her to eat - I feed her snacks and full fat foods, but she takes two bites and says she’s full. But we are relieved that her hormones look fine. The low IGF1 is most likely due to her low BMI. Thanks everyone for sharing your thoughts and experiences. They really helped during this uncertain time of waiting.

I would take her to a good GI to make sure something else isn’t going on. We had seen a team at NIH - with similarities to your story and they missed the root issues. Granted it was a complicated case - but often these are and have more issues beyond growth

Some of those NIH doctors are very new and also very ‘head in the clouds’ - quoting the most research they have read but not considering that this child is having a problem that needs to be fixed immediately. Malnutrition from choosing not to eat is a big problem that needs to be fixed quickly.

Kids often don’t eat much and say they are full but it maybe due to an underlying medical condition. For example, crohns they may not eat much and not grow. Sometimes kids can’t decipher between full and pain. It’s not always a choice. But a good experienced GI can sort it out.

Very much agree with you on NIH - our experience was with some very green folks. Even when they brought in the senior folks, they missed issues outside their research speciality I think NIH can be great if you fall under a specific trial, but not for a consult and especially when it’s a complex case. Better to see top doctors who see a lot of varied of cases and interact with more kids

[Anonymous]

Anonymous wrote:I am the one posting about our 13.9 year old son who is going thru testing. I do want to clarify there are those testing or considering HGH to get taller because they don’t want to be short. And those who are considering hormone treatment because of medical situation.
Or son was sent to endocrinologist beacause he has only grown 1.5 inches in 19 months. The average for his age is 2-3 inches a year so he has failed three 6month growth tests.
Since he’ll be 14 in October, the specialist is concerned about his lack of growth this late in the game. I’m 5 7 and my husband is 6 ft— so we are both fairly tall. We weren’t even really cognizant of problem— primary doc just noticed lack of growth reviewing his chart at physical and some low levels of hormone in blood test.
I don’t think he’ll qualify because expected height is still 5”9 but he meets the two other criteria- so we”ll know more after some all day blood draw (every 30 min while giving some drug to test for hormone)—end of the month.

Can you share what other criteria? I'm concened about my son, who is falling off his growth curve at age 12. My DH is 6'2", and I'm 5'8". DS is currently at 40%, but when he was born and shortly after he was 75%. He's now tracking to be 5'10" or less. It's not that I'm bothered by that, but it doesn't seem like that is quite where he should be. Our ped sucks, they don't notice anything. On doing research, DS has is also VERY delayed in tooth loss...so I' mworried. I also can't get an appt with a pediatric endo before end of Sept, unless someon can recommond their Pediatric Endocrinologist for this?

[Anonymous]

Anonymous wrote:

Anonymous wrote:This is just the thread I need, I am in the same boat with DC.
Now 13 yr 3 months.
4.11 inches
Born 9 lbs, 22 inches full term, he was ahead in the curve until first 3 years, ever since his growth slowed down (He refused bottles and formula as a baby)
He is hypothyroid and using medication from a year, he gained an inch last year.
My Pedi or my endocrinologist have never discussed the things I read in this post.
They just explained that he will eventually gain height.
I am 5.7 and DH is 5.9.
I strongly want to do whatever I can to get him a chance to gain decent height.

Kids immediately look down on shorter kids. I have seen them engage in loose talk “ you are short and weak” etc.. this is just too common. I can imagine a great amount of self esteem issues stem from these interactions.

I certainly got some new information to talk to our Peds.

I think one of the keys with your DS is where he is in puberty. My DS is similar to yours, he was full-term, 8 1/2 lbs, and off the growth charts his first two years. Came back down to the 75th percentile in elementary school, then was 50% towards the end of elem. school. When he was 12 and had dropped even more, to the 15th or 20th percentile, and had hardly grown over the previous year, our pediatrician referred us to an endocrinologist. He did get a fair amount of teasing about his size. He took it in stride, but I also saw where his social status had changed as his peers had grown a foot taller than DS and were physically maturing, while DS still looked like a young boy.

Based on exam, family history, family heights, etc., the endocrinologist was pretty certain it was just delayed puberty. He ordered the bone x-ray series which showed DS was 18 months behind in bone growth than chronological age. The dr. treated DS conservatively, he didn't test hormones at all, just the bone x-ray and followed DS for two years. DS did start puberty about a year later than the average, and has hit pubertal stages and milestones at the same rate, about a year later than average. When we first started with the endocrinologist at age 12, he was 4' 9". Now at 14 1/2, he's grown to 5'5". The endo. expected his peak growth to come around age 15 to 15 1/2 (average peak height growth for males is 14).

I should add that I'm 5'3" and DH is 6'2". So where my kids end up is really a crap shoot!

You may want to ask your endocrinologist about a bone x-ray to determine where your DS is in bone age/growth. It would be helpful to have "oh he'll still grow" confirmed.

Definitely. Friends of ours heard this a lot--your DS will grow. DH is 6'5", DW is 5'6", her brothers are 6'+. DS kept expecting another growth spurt, ped kept sayig it will come. He's an athlete in a sport that requires size. At 16 they finally took him for X-rays, docs said he was done growing. He's 5'8". He was devasted. Probably some sort of HGH deficiency since everyone is tall and predicted height was well over 6'. Too late for help.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I am the one posting about our 13.9 year old son who is going thru testing. I do want to clarify there are those testing or considering HGH to get taller because they don’t want to be short. And those who are considering hormone treatment because of medical situation.
Or son was sent to endocrinologist beacause he has only grown 1.5 inches in 19 months. The average for his age is 2-3 inches a year so he has failed three 6month growth tests.
Since he’ll be 14 in October, the specialist is concerned about his lack of growth this late in the game. I’m 5 7 and my husband is 6 ft— so we are both fairly tall. We weren’t even really cognizant of problem— primary doc just noticed lack of growth reviewing his chart at physical and some low levels of hormone in blood test.
I don’t think he’ll qualify because expected height is still 5”9 but he meets the two other criteria- so we”ll know more after some all day blood draw (every 30 min while giving some drug to test for hormone)—end of the month.

Can you share what other criteria? I'm concened about my son, who is falling off his growth curve at age 12. My DH is 6'2", and I'm 5'8". DS is currently at 40%, but when he was born and shortly after he was 75%. He's now tracking to be 5'10" or less. It's not that I'm bothered by that, but it doesn't seem like that is quite where he should be. Our ped sucks, they don't notice anything. On doing research, DS has is also VERY delayed in tooth loss...so I' mworried. I also can't get an appt with a pediatric endo before end of Sept, unless someon can recommond their Pediatric Endocrinologist for this?

FWIW... going from 75% to 40% is not "falling off" his growth curve. Your endocrinologist should check his growth hormone levels as well as other pituitary hormone levels (thyroid, prolactin, cortisol). If things look a little problematic, then the endo would order a growth hormone stimulation test (where they spend the morning in the hospital getting blood drawn every 30 minutes). Likely, your son is fine. 5'10" is average and would not be unusual given your heights (include your father, your father-in-law, any brothers, uncles into your thoughts about genetic height potential).

[Anonymous]

Anonymous wrote:

Anonymous wrote:.

Can you share what other criteria? I'm concened about my son, who is falling off his growth curve at age 12. My DH is 6'2", and I'm 5'8". DS is currently at 40%, but when he was born and shortly after he was 75%. He's now tracking to be 5'10" or less. It's not that I'm bothered by that, but it doesn't seem like that is quite where he should be. Our ped sucks, they don't notice anything. On doing research, DS has is also VERY delayed in tooth loss...so I' mworried. I also can't get an appt with a pediatric endo before end of Sept, unless someon can recommond their Pediatric Endocrinologist for this?

A lot of folks here have recommended Dr. Ali Mohamadi in Chevy Chase. Before seeing those recommendations, I took my DS (also at the age of 12) to Dr. Barry Reiner. He's in Baltimore and Columbia.