growth hormone therapy

So my adorable little man...is too little for his age. We've known since i was 26 weeks pregnant and put on bedrest for high blood pressure and Jake having IUGR.

After close monitoring - he has fallen off his growth curve..and we are meeting the endocrinologist tomorrow to discuss growth hormones.

Any folks out there have any real life experience?

 

Good Luck tomorrow. I hope it goes well, and you guys are able to get some answers. :hug:

 

Just wanted to wish you guys good luck as well :hug:

 

Oooh! I know all about this! I was the office manager for a pediatric Endocrinologist's office for many years and was the one that scheduled the testing, spoke to the parents (prepped the parents) and got authorization from the insurance companies for the testing and the medicine if needed.

First of all, the first time you go in, he will be measured (and it would be best if you could bring in ALL the heights and weights from birth) and the parents height noted (someone from a short family will be more likely to just be short, but if my child was under the 25% percentile, I would be concerned because I'm 6 foot tall, which is at the 110% percentile). He will have labs done, most likely at least an IGF-1 (Insulin Growth Factor) and a bone age xray (where they take the size of the x-ray and how closed the growth plates are and determine a bone age).

From there, if the IGF-1 & bone age xray comes back low, they will most likely do a Growth Hormone Stimulation Test. This test is usually 4 hours, they insert an IV, give one amino acid, draw blood at 30/60/90 minutes after the amino acid, then repeat with a different amino acid. (Usually Arginine and L-Dopa).

If the growth hormone level is low after the big test, then it's time for medicine. At the time I worked in the office, it was done with an insulin syringe or a pen-device. That is still probably the standard. I promise you (the mom) that the injections don't hurt. The needle is so tiny and the amount (at his age) will be miniscule, so it won't hurt. After a few weeks, he'll be adjusted to getting the medicine which he will have to take until his growth plates fuse. So he could be taking it for 12-15 years. So you have to be dedicated to making sure he gets his injection daily.

If he doesn't receive the hormone, worst case, his bones will fuse before he reaches full potential height and won't grow any more.

Suggestion that I have: ask the doctor for a Rx for Emla Cream. It will numb the site for the IV (ask where to put the medicine, usually in the elbow), but it has to be on for at least 30 minutes before they do the IV for it to work. He will need to be fasting that day as well. Uhhhhh, any specific questions?

 

I don't have first hand experience, but it's something I know we may end up thinking about for Anthony as he is quite short. Not sure the requirements, but I know two of dh's cousins both had the therapy done-and they were a bit older. One was 14/15 when we got married, but he seriously looked like he was 10. He was just that short. Now-he's taller than both his parents and dh(both of them are really). Good luck with the appointments!

 

wow..i should have spoken to you awhile ago. We have been monitored by the endo for the last two years - and we did the growth hormone stimulation test last month (it was horrible) - he passed, but barely. However since he is SGA and has fallen off the curve, they are ready prescribe hormones. And i do know he will be on them until he stops growing..

I guess i'm more interested in good results from using the hormones and whether anyone saw anything negative. My dad who is a dr (child psychiatrist) is somewhat opposed to this (he found a list of scary side effects) and all we have heard are good things about the hormones..

thanks everyone for your support, it's been more upsetting than I thought even though we have been discussing it for quite some time.

 

Crap, my reply disappeared.

Basically, in the practice, we had over 450 children on GH. None of them didn't grow. None of them had any adverse reactions. Granted some patients waited too long and weren't able to reach their parents' height, but they all made it over 5'. You can check out Magic Foundation.

And the older children were happy with the results, of being on the growth chart, most hovered around the 50% percentile. Perfectly, absolutely normal.

 

:hug: Miriam. No advice, just wanted to say I'm thinking about you guys. Good luck!

 

thanks everyone!!! Appointment went fine..we are going to try to get insurance to approve them and move forward.

Thanks, this helps. the Endo has been clear from the beginning around 2-3 is the optimum time to start, so I feel like we are the right window, he will start close to 4. IMHO he wasn't ready for the growth test until last month - did i mention it was horrible?

And the Magic foundation was recommended to me, I checked it out.

 

Yeah, the tests are brutal on wee kids, it was always the worst with 2-5 year olds. They didn't understand completely what was going to happen or why they were stuck in that bed all day.

Fingers crossed that the insurance approval will be swift and you can get him started on it asap.

 

I am so happy you posted this! we are at the stage where we've done everything but the hormone stimulation test for the endo and the stool samples/endoscopy for gastro. How long does the ghs test take? they mentioned it would be long and she's be restrained.....

 

I think it's 4 hours. Yes she'd be restrained but she'd probably be watching television (they usually feel sick when doing the test).

 

How old is your daughter? Jake was not restrained, he was hooked up to an Iv for one part of test, but not restrained.

Most kids fall asleep when they are given Clondine (?) It took Jake almost 90 minutes (?) to fall asleep and they hard trouble getting in the IV for the blood draws.

The whole test took about 4.5 hours, partly because Jake didn't weigh enough for them to take additional blood and perform additional tests (on the blood, not on on Jake).

good luck! I was so glad when it was over.