Human Growth Hormones in children

[mbw12]

anyone have any first hand experience with this? or know of anyone? pros/cons.....results? did the pediatrician recommend it first or was it something that you brought up to the dr.????

 

[AnnR]

You need to check out the Magic Foundation at www.magicfoundation.org Do you think your child needs it and if so, why? I actually am on it as an adult -I am growth hormone deficiant (actually I have panhypopituitarism) I was offered it as a child but chose not to take it at the time.

 

[ireland_nicole]

my two brothers both received injections when they were younger for pituitary insufficiency. They are now each about 5'6"

 

[Goofyluver]

You need to check out the Magic Foundation at www.magicfoundation.org Do you think your child needs it and if so, why? I actually am on it as an adult -I am growth hormone deficiant (actually I have panhypopituitarism) I was offered it as a child but chose not to take it at the time.

My DS also has panhypo due to a neurologic abnormality. Magic Foundation is a wonderful source of information.

DS was average height until about the age of 5...when he began to fall off the growth charts. He is now not on the growth chart at all.

We have been on human growth hormones for a little over a year. He is 12. He will most likely be on the hormones into adulthood.

My DS began being followed by the endocrinologist at age 7...but we didn't choose to start the hormones until last year. It was a difficult decision for us...but it was the right one.

If you have questions OP...don't hesitate to ask.

ETA: DS takes Norditropin Growth Hormone...very easy to administer...

 

[rentayenta]

Love magicfoundation.org My DD has IGF1 Deficiency and takes Increlex IM BID.

 

[Judy from Boise]

I have a good friend and a nephew who both got excellent results!

 

[Princessbaby]

This has been brought up briefly concerning my DD. She is 4.5-looks about 2 and she has never been on a growth chart. Her endocrinologist tells us that without any interventions and continuing on her growth pattern, she may reach between 4'10"-5" as an adult. I think this is functional. Right now is when she is having issues because she can't reach anything so we make adjustments as needed. Maybe I will also check out the website. We have put off talking about GH for now because I am so on the fence about it. As far as we know she doesn't have any reason to be short, all her tests have come back normal.

 

[Camicar]

A cousin had it and he grew eventually to be about 5'6". He had no problems and he was quite glad when his parents finally agreed to the treatments because at age 16 he was the size of a 7 year old -- what fun high school was for him. Not.

I also had a friend in college (so long ago == dark ages) and her parents put her on an anti-growth hormone bec she was looking to be tall and they felt no woman should be more than 5'4" tall. Some idiot doctor went along with this and basically stopped her growth at 4'7" -- even after stopping the treatments she never grew again. I still think that was a form of child abuse. (And her parents were very well educated, sophisticated people with creative jobs in the arts field, but still had this pathology about women needing to be 'dainty'. Irony -- the mother was about 5'9", but she felt like a 'hulk' and didn't want her dd to 'go thru that'. So instead, they pumped her full of drugs and stunted her growth.)

 

[redshoes]

My son(4) just finished his stim test last week and we just got the results back on Friday that he is producing very very little hormone. He will be starting meds in a few weeks. At my son's last doctors appointment, the doctor said that he was concerned he had grown less than a 1/2 an inch in two years. The doctor ran some bloodwork that came back as a concern for a lack of the growth hormone. This was back in June, it took us from June to September to get an appointment with an endo. Other than the wait, the process has gone quickly. I'm nervous about the treatment, but at this point we have no option-we have to do it.

 

[EveDallas]

My DS also has panhypo due to a neurologic abnormality. Magic Foundation is a wonderful source of information.

DS was average height until about the age of 5...when he began to fall off the growth charts. He is now not on the growth chart at all.

We have been on human growth hormones for a little over a year. He is 12. He will most likely be on the hormones into adulthood.

My DS began being followed by the endocrinologist at age 7...but we didn't choose to start the hormones until last year. It was a difficult decision for us...but it was the right one.

If you have questions OP...don't hesitate to ask.

ETA: DS takes Norditropin Growth Hormone...very easy to administer...

I have to say, this post weirded me out a little. I could have written this. It is the exact same story as mine, right down to my DS age, when he fell off the growth charts, when he started HGH, and what type of meds he takes. How tall is your DS now, if you don't mind me asking. My DS was 39 inches and 42 pounds at age 7. At 12, he is 52 inches and 64 pounds - still very small but at least he is growing.

 

[craps7or11]

My child has been on HGH for the last 17 months and grows an average of 3/4 to 1 inch every 3 months. It was a long process to get on the medication and many tests before the treatment was ok'd and bloodwork every 3 months while on the medicine. It has been the best thing that has happened though as we were told our child wouldn't grow without this medication.

Good luck. I know the road is rough and long, but it is worth it.

 

[Goofyluver]

I have to say, this post weirded me out a little. I could have written this. It is the exact same story as mine, right down to my DS age, when he fell off the growth charts, when he started HGH, and what type of meds he takes. How tall is your DS now, if you don't mind me asking. My DS was 39 inches and 42 pounds at age 7. At 12, he is 52 inches and 64 pounds - still very small but at least he is growing.

*shudder* Wierd...very wierd.

Jon is 53 inches at 12 1/2 and just over 70 pounds...he's lost a bit of weight due to illness in the past few days.

He hasn't had one of the big spurts in growth...and we've been on Norditropin for 13 months. He has grown right at 2 inches in the past year. When we began...we were told that he would have his "catch-up" growth in the first year.

Well...he is no longer falling off of his curve. He is now maintaining his curve OFF of the growth charts. Actually...not really maintaining his curve...more of a leveling out. I'm sure you'll understand that as a fellow momma with a kiddo like this.

He's still very small...but he is growing.

They calculated an estimate of adult height for me and if he stays on his own curve...they estimate 5'5". I sure hope so. As I'm only 4'11"...

How do you like the Norditropin? Side effects?? Did you have a big spurt of growth? Does your son self administer?

Sorry for the questions.

Also...does your son have other issues as well? My DS is multi-disabled...and I wonder if other children also have co-existing diagnosis.

 

[EveDallas]

*shudder* Wierd...very wierd.

Jon is 53 inches at 12 1/2 and just over 70 pounds...he's lost a bit of weight due to illness in the past few days.

He hasn't had one of the big spurts in growth...and we've been on Norditropin for 13 months. He has grown right at 2 inches in the past year. When we began...we were told that he would have his "catch-up" growth in the first year.

Well...he is no longer falling off of his curve. He is now maintaining his curve OFF of the growth charts. Actually...not really maintaining his curve...more of a leveling out. I'm sure you'll understand that as a fellow momma with a kiddo like this.

He's still very small...but he is growing.

They calculated an estimate of adult height for me and if he stays on his own curve...they estimate 5'5". I sure hope so. As I'm only 4'11"...

How do you like the Norditropin? Side effects?? Did you have a big spurt of growth? Does your son self administer?

Sorry for the questions.

Also...does your son have other issues as well? My DS is multi-disabled...and I wonder if other children also have co-existing diagnosis.

He self administers sometimes - other times I do it. He has never had a large growth spurt - averages about 2 1/2 - 3 inches per year. He has had no side effects so far (knock wood). He also has several learning disabilities (I just realized I was responding to you on the NCLB thread also) and he is a Type 1 diabetic. I am 5'2" and if he stays where he is (like your son, he has leveled out) they calculate an adult height for him of 5'6" - 5'8".

 

[Goofyluver]

He self administers sometimes - other times I do it. He has never had a large growth spurt - averages about 2 1/2 - 3 inches per year. He has had no side effects so far (knock wood). He also has several learning disabilities (I just realized I was responding to you on the NCLB thread also) and he is a Type 1 diabetic. I am 5'2" and if he stays where he is (like your son, he has leveled out) they calculate an adult height for him of 5'6" - 5'8".

Does he look much younger? Due to Jon being DD as well, he is often mistaken for a much younger child.

Jon also has Addison's disease...which is also a result of his neurologic abnormality...in addition to a series of other things.

They feel Jon's Addison's and his panhypo are related to his neurologic abnormality.

Do they think the Diabetes is related??

I'm sorry...this stuff is absolutely fascinating to me. We're pretty "new" to the scene...and we've never met another child like Jon...IYKWIM?

Really...good luck to you and your son on your journey.

 

[EveDallas]

Does he look much younger? Due to Jon being DD as well, he is often mistaken for a much younger child.

Jon also has Addison's disease...which is also a result of his neurologic abnormality...in addition to a series of other things.

They feel Jon's Addison's and his panhypo are related to his neurologic abnormality.

Do they think the Diabetes is related??

I'm sorry...this stuff is absolutely fascinating to me. We're pretty "new" to the scene...and we've never met another child like Jon...IYKWIM?

Really...good luck to you and your son on your journey.

Robert looks much younger than he is - most people think he is around 9. His endo has said his diabetes could be related. Type 1 diabetes is an auto-immune disease where the body recognizes the beta cells (which produce insulin) as foreign bodies and destroyes them. His doctor thinks that these same antibodies may have affected his bodies ability to produce growth hormones. Please keep me updated on your son if you don't mind (and I'll do the same). I just can't get over how alike our kids seem to be.

 

[Goofyluver]

Robert looks much younger than he is - most people think he is around 9. His endo has said his diabetes could be related. Type 1 diabetes is an auto-immune disease where the body recognizes the beta cells (which produce insulin) as foreign bodies and destroyes them. His doctor thinks that these same antibodies may have affected his bodies ability to produce growth hormones. Please keep me updated on your son if you don't mind (and I'll do the same). I just can't get over how alike our kids seem to be.

You too.

Thanks for sharing...

And OP...sorry for the momentary hijack.

It's not often I get to share common experiences with another mother.

 

[AnnR]

It is amazing to me to see all the responses to this. I thought of putting Panhypopituitary in the subject line once just to see if I got any responses!! For those who have pituitary problems in addition to GH (the pituitary is the master gland and controls most of the hormones in the body), another good organization is www.pituitary.org they can be a bit negative/harsh at times but their resource guide is excellent and they do good work.

 

[AnnR]

This has been brought up briefly concerning my DD. She is 4.5-looks about 2 and she has never been on a growth chart. Her endocrinologist tells us that without any interventions and continuing on her growth pattern, she may reach between 4'10"-5" as an adult. I think this is functional. Right now is when she is having issues because she can't reach anything so we make adjustments as needed. Maybe I will also check out the website. We have put off talking about GH for now because I am so on the fence about it. As far as we know she doesn't have any reason to be short, all her tests have come back normal.

I personally don't believe in giving this unless there is a need. If her tests are normal (did they run an actual IGF-1 test?) then I would not give it to her. I was 13 when I had my surgery, they offered it to me then but didn't know a lot about it (1979) I decided against it at the time. I am 4'11" and yes, sometimes I wish I was taller. But, I have some pretty tall friends and they don't like that either. Besides not being able to easily find pants that fit I really don't care.

 

[Anne MN]

asking a new question here-

DD is 13 have other health issues- is taking meds for thyroid (hypothyroid)
DD is 48inches and 45 lbs she has always been smaller (she is a twin)
had endo consult in Oct while in hospital for other stuff. we see them in Dec for test resluts and such.
Growth hormone was brought up during eval. DD has gained NO weight or height in over a year. reasons for her not growing have been "wiped out" (she was waiting for a transplant, was transplanted in march)

what questions to ask? If you ask me cardio pulmo, or how to triage and treat someone, I can answer, endo, no clue it is new to me.
(Dr's are still on the fence as to if they have to "fix" her diaphram again! so we are talking major surgery for that.)

thanks

 

[Goofyluver]

asking a new question here-

DD is 13 have other health issues- is taking meds for thyroid (hypothyroid)
DD is 48inches and 45 lbs she has always been smaller (she is a twin)
had endo consult in Oct while in hospital for other stuff. we see them in Dec for test resluts and such.
Growth hormone was brought up during eval. DD has gained NO weight or height in over a year. reasons for her not growing have been "wiped out" (she was waiting for a transplant, was transplanted in march)

what questions to ask? If you ask me cardio pulmo, or how to triage and treat someone, I can answer, endo, no clue it is new to me.
(Dr's are still on the fence as to if they have to "fix" her diaphram again! so we are talking major surgery for that.)

thanks

I would ask several questions...

1. What tests have they done in order to determine whether or not there is an issue with growth/growth hormones?
2. Sometimes...normal blood cultures do not indicate the presence or severity of growth hormone deficiency or other issues which can contribute to delayed growth. Would they recommend a stim test in order to closely examine the pituitary and growth hormone levels in a controlled environment?
3. Why would they be recommending HGH? For what purpose? And what result would they be looking for if there has not been any indication of growth hormone deficiency?
4. If you decide to use HGH, what would be the prognosis for your DD? How long would they be looking to give HGH a trial run? What results would they have to see in order to consider HGH the proper treatment for your DD?
5. If there is no response to HGH, what other options would there be?