My Child is on Growth Hormone & I have a question

[kc10family]

My DD was put on HGH 2 yrs ago after a few years of testing etc. We moved and our new endocrinologist says she has no clue why my child has been on this med and thinks she should not be on it at all. I am upset, happy etc.
So now I am getting all records from the past Endo Dr, talking with her last Peds and going to get a second (in our new area) opinion from another Endo Dr.

My fear is that we take her off, her growth flat lines again and we have to put her back on it. Shots everyday for kids are not fun for anyone. I dont want to mess with her mind. I dont want her to think all is well and then next year we start this all up again.

Anyone ever start and stop HGH? Know anyone who has had this issue?

 

[Robinrs]

How old and how tall is she now?

 

[DisneyBamaFan]

The new doctor made this judgment without seeing her medical records? I would get a second opinion from someone not affiliated with this doctor.

 

[The Mystery Machine]

Sent you a pm....and yes I echo Bama. My dd was on growth hormone for 5ish yrs and this does not sound right.

I forgot to ask how old she is? My dd is 13 and done growing so IF your dd needs the GH, you are wasting time by going off the meds. You cannot get time back.

Also where is she on the growth chart now? Maybe that is why you got that reaction from the endo.

 

[kc10family]

she is 6 now and been on the gh for 2 years. She started at 86cm and was 106.4 cm when we left CA. Shw went from below the 0 percent to above the "red line" on the growth chart toabout 3 percent. I would say she has grown and is catching up to her classmantes in size.

 

[The Mystery Machine]

she is 6 now and been on the gh for 2 years. She started at 86cm and was 106.4 cm when we left CA. Shw went from below the 0 percent to above the "red line" on the growth chart toabout 3 percent. I would say she has grown and is catching up to her classmantes in size.

Then why in the hell did the endo say that stuff to you? How long was your kid not growing?

Sounds like you found a whack job, imo. Let's be honest, some doc's out there do not agree with GH.

 

[golfgal]

We had DS17 tested for growth issues when he was in 4th grade. The first endo we started with was great. She did all the preliminary work and we were going back for the evaluation appointment and ended up meeting with a different doctor because she had a baby that morning. The other dr was going on and on about how some kids were just small and that was the way it was, all kids have their own growth pattern, etc. When I asked him to explain why my son hadn't grown AT ALL in the past 2 years, he said "oh, I didn't know that, I hadn't looked at his chart". Well come on, you are evaluating a kid for growth issues the least you could do is look at his growth chart and see the big flat line .

He ended up testing on the very low end of normal so he didn't "qualify" for growth hormones. With all the bone x-rays, etc they did predict he should be in the 6' range when he is done growing. He is only about 5'7" right now so he has a lot of growing left to do.

 

[DawnCt1]

I would seek out a second or even a third opinion at a major pediatric/medical center with physicians who are heavily involved in research and academics. Even if you have to travel a couple of hours, its too important not to be accurate.

 

[kc10family]

Then why in the hell did the endo say that stuff to you? How long was your kid not growing?

Sounds like you found a whack job, imo. Let's be honest, some doc's out there do not agree with GH.

I know, this is why I am a bit ticked off and wondered who else has had this type of issue.

We had DS17 tested for growth issues when he was in 4th grade. The first endo we started with was great. She did all the preliminary work and we were going back for the evaluation appointment and ended up meeting with a different doctor because she had a baby that morning. The other dr was going on and on about how some kids were just small and that was the way it was, all kids have their own growth pattern, etc. When I asked him to explain why my son hadn't grown AT ALL in the past 2 years, he said "oh, I didn't know that, I hadn't looked at his chart". Well come on, you are evaluating a kid for growth issues the least you could do is look at his growth chart and see the big flat line .

He ended up testing on the very low end of normal so he didn't "qualify" for growth hormones. With all the bone x-rays, etc they did predict he should be in the 6' range when he is done growing. He is only about 5'7" right now so he has a lot of growing left to do.

Wow, that is great and encouraging.

I would seek out a second or even a third opinion at a major pediatric/medical center with physicians who are heavily involved in research and academics. Even if you have to travel a couple of hours, its too important not to be accurate.

The military will only let us go so far and to see so many Dr. She was last seen at St Louis Childrens Hosp. and that is the Dr who ask us Why is she on this.
I know I can ask and get a second opinion and we will. I think I would rather her go have a few more test now then stop and start again later.

FYI- she was 2 weeks late and of average wt / ht at birth so falling off the "curve" at 2 mths seems a bit odd to me.

 

[golfgal]

I know, this is why I am a bit ticked off and wondered who else has had this type of issue.


Wow, that is great and encouraging.


The military will only let us go so far and to see so many Dr. She was last seen at St Louis Childrens Hosp. and that is the Dr who ask us Why is she on this.
I know I can ask and get a second opinion and we will. I think I would rather her go have a few more test now then stop and start again later.

FYI- she was 2 weeks late and of average wt / ht at birth so falling off the "curve" at 2 mths seems a bit odd to me.

I wouldn't say that. Most kids take a year to really grove into their real track. Our twins started out in a low percentage but by a year were in about the 75%, DS17 started out in the 95% and at 6 months was in the 50% where he stayed until 2nd grade.

I don't know of many kids without serious underlying medical issues that do growth hormones as young as 6 to be quite honest.

 

[heart4pooh]

Have you looked into the website hgfound.org? The man that runs the site is extremely knowledgeable and helpful. There is also a forum for parents to discuss everything that was very beneficial to me.

My son was 9 lbs 3 oz at birth and had failure to thrive from that day on. I had gestational diabetes so that is assumed why he was large at birth.

At the age of 3 we finally got a referral to see a Duke pediatric endocrinologist. It cost thousands of dollars and we were told it was undetermined why he wasn't growing. As time went on he became more sickly and lethargic. To make a long story short, after another trip to Duke at 9 and still no answers it was discovered he wasn't metabolizing iron! His hemoglobin and hematacrit had often been checked and was always just a little low but his iron wasn't checked until he was 9!!

He began 4th grade weighing only 46 lbs! With the iron he began to grow and regained his health for the most part. Then he stopped growing a yr later. He was 10 and didn't grow 1/2 an inch or put on a single pound in 9 months and he was getting tired and not feeling well again. That's when my endo saw him and got the ball rolling.

We still don't know why he doesn't metabolise iron. Celiac bloodwork came back negative but when we get health insurance I want to do the endoscopy to be sure. He takes an adult dose daily of iron to keep his stores up.

Anyhow, with the GH test it showed how he was producing less than .01 of GH and only reached a level of 8 with the last blood draw. He was a candidate. Eli Lilly sends us the GH for free with the patient assistance program which I am very thankful for.

He has increased muscle tone and is more active now. I know my story may be different than most as my son has a double whammy of issues that effected his health and growth. But, I have to say that I kept making a ruckus because it seemed like the doctors would not listen to me. I'm glad I didn't sit back and agree with being told that some people are just small!

 

[The Mystery Machine]

Amen heart4pooh!!! Unless you have a kid who is NOT GROWING you just don't understand.

I repeat to all of you who think this is about height...NO...it is not. I wish you guys would understand what that means.

It is GROWTH hormone, not height hormone.

My dd was not able to get muscle tone or gain weight or her feet would not grow.

There is much more to growth hormone than height.

 

[kc10family]

heart4pooh- I will look into that site. Thank you.

The Mystery Machine- DD had the same shoe size for over a year (7 toddler) and she just got into size 5 pants (length wise), well close enough.
I think the gh helped and I am just going to look more into it befoer we say done.

 

[dis-happy]

Have you looked into the website hgfound.org? The man that runs the site is extremely knowledgeable and helpful. There is also a forum for parents to discuss everything that was very beneficial to me.

My son was 9 lbs 3 oz at birth and had failure to thrive from that day on. I had gestational diabetes so that is assumed why he was large at birth.

At the age of 3 we finally got a referral to see a Duke pediatric endocrinologist. It cost thousands of dollars and we were told it was undetermined why he wasn't growing. As time went on he became more sickly and lethargic. To make a long story short, after another trip to Duke at 9 and still no answers it was discovered he wasn't metabolizing iron! His hemoglobin and hematacrit had often been checked and was always just a little low but his iron wasn't checked until he was 9!!

He began 4th grade weighing only 46 lbs! With the iron he began to grow and regained his health for the most part. Then he stopped growing a yr later. He was 10 and didn't grow 1/2 an inch or put on a single pound in 9 months and he was getting tired and not feeling well again. That's when my endo saw him and got the ball rolling.

We still don't know why he doesn't metabolise iron. Celiac bloodwork came back negative but when we get health insurance I want to do the endoscopy to be sure. He takes an adult dose daily of iron to keep his stores up.

Anyhow, with the GH test it showed how he was producing less than .01 of GH and only reached a level of 8 with the last blood draw. He was a candidate. Eli Lilly sends us the GH for free with the patient assistance program which I am very thankful for.

He has increased muscle tone and is more active now. I know my story may be different than most as my son has a double whammy of issues that effected his health and growth. But, I have to say that I kept making a ruckus because it seemed like the doctors would not listen to me. I'm glad I didn't sit back and agree with being told that some people are just small!

We ended up at Duke as well. Very impressed with the ped endo we saw there (referred when my baby didn't grow at all for 9 months). In the end his GH levels were okay, although some other counts were a bit whacked. Actually, I'm supposed to bring him in for another round of b/w to check things again. Other than that I'm happy to say that my ds did grow finally, enough to get him on the 3% chart at least; adding pediasure to his diet seemed to make the difference. If he stops growing again to the point he'll be abnormally small we'll be pursuing the GH.

 

[The Mystery Machine]

heart4pooh- I will look into that site. Thank you.

The Mystery Machine- DD had the same shoe size for over a year (7 toddler) and she just got into size 5 pants (length wise), well close enough.
I think the gh helped and I am just going to look more into it befoer we say done.

Good for you for looking into it. You may not need it, who knows? Certainly it is a PITA giving those shots daily. I don't miss it. And really we did quit the shots on our own when we moved here back to MO. My dd was going to be in 6th grade, she was about done growing so we stopped.

Looking back, she was in the same shoe size for over 3 years as a toddler. I mean that was not normal. Now she was cute and we called her Cindy Lou Who. Plus she had the high squeaky voice. Which is cute, but not so cute when you are in K. Literally 2yos were bigger that she was.

Her ped waited until the last moment and we tracked her every 3 mons. when she was in K. It became clear she was not growing any longer and then I went to an endo.

I hope it all works out for you!!!!