Any Experience or Knowledge on Growth Hormone Therapy?

Hi T.,

I don't have any recent experience with this. Growing up, my brother was on the short side, and growth hormones were a possibility that my parents really considered seriously. In the end, though, there wasn't enough long term data to know what they could ultimately cause in the body (cancer, etc.). My mom dedided that it would be better that he be short and healthy than risk a devastating side effect decades down the road. They probably have some longer term data, and I would check it out carefully: long term safety would be my deciding factor. PS, my brother is on the short side for a man, but he is married, with 2 kids, and incredibly successful--short hasn't impacted his life a bit.
Good luck with your decision!

My best friends daughter has Turner Syndrome, a lot of your daughters symptoms sound similar to hers. She is almost 7 and she has been getting hormone shots for almost 2 years now. My friend is very happy with her daughters progress & as far as I know she has not experienced any side effects.
Good luck with whatever decision you choose.

Hi T.,

I'm sorry that your little girl has had so many medical concerns. What a very hard thing for her and the whole family.

I'm afraid that I do not have any information or suggestions about growth hormones, but I did have a thought: is the intent of the therapy purely to help her grow taller, or are there other medical benefits to her? 41 inches is barely taller than my 4 year old, so she is clearly VERY small. Would another few inches really make that much difference in her overall quality of life? If she does not want the therapy and there are no real health benefits to her, I'm not sure it's such a great idea.

Whether she ends up being 41 inches tall or 51 inches tall, she will always be very petite. Perhaps it is better to focus instead on helping her to be happy with who she is, whatever size that ends up being. Just some food for thought.

Good luck! I hope the doctors give you some answers soon!

T.

There is nothing wrong with being petite. She is old enough to understand what it entails if you were to explain it to her. Make sure she knows the difficulties and the social issues. How long will she need daily shots? She has probably been through so many procedures she is tired of them. If she has all the information that you and her doctors can give her and she doesnt want the shots I would think its her decision.

If all the growth hormones are for is to make your daughter taller than I say dont do it!!! So what if she is short? She can still live and function normaly in life. Buy her a step stool for her house when she moves out! =) My mom is short and tiny and it has never been an issue with her for any reason.(I always had to reach the stuff that was too high! haha) She was given a stool from a family member that actually had sentamental value(if you can believe such a thing!) If your daughter is against it and your husband only wants to do it for height gain, let your daughter make the decision. She is 12 after all, it is her body and she should probably be the one, who I believe should make the decision. My friend once faced the same issue with her daughter who is only 3! And has decided to not go thru with the procedure since deciding you can live a normal life while being short. The side effects are terrible. After reading everything your child has already had to gone thru.. I say dont do it!! It's just my opinion though. Hope this helps. Good luck and Best Wishes!

I am an RN with some limited experience with HGH. Most HGH comes in a pen form with very tiny needles - nothing like what you see with immunizations. Your doctor should provide training for you and your dtr, using a saline filled pen and a pillow. If they haven't already at least shown you an d your dtr the pen an d the needles, ask to see some samples. That might alleviate some of your fear about the injections. Side effects tend to be fairly rare and a potential benefit might be some increased lean muscle mass, which should help her strength, etc. Hope that helps.

OMG, that poor baby. God Bless you all for going through what you've been trhough. My son born with a chromosone deleation and has had many "issues" (if you will). I don't know where you live, but I hope you're seeing specialist at a specialized childrens hospital and not just "outside specialists". My son was misdiagnosed several times and we ended up at Chidrens Hospital of Philadelphia (CHOP). THE BEST!!! They saved his live. By the time we made it to them, 3 months old, he was about a day away from dying. Our (lovely - puke, puke) trama haospital here in Jersey and the 2 groups of pediatricians MISSED what was wrong. CHOP ended up doing emergency heart surgery on him.

Anyway, sorry for running on with that. I'd either find a "CHOP" near you if you haven't done so already as your 2nd opinion, and/or just listen to your daughter. Maybe she REALLY doesn't want to have it done (and, yes, needles everyday are going to be scary). Maybe she needs to read about it and fully understand. (I don't know if she knows the lenght of the side effects or not). It's a hard thing, for all of you, to have to go through another thing.

I wish you all the best of luck. Have a wonderful Holiday. Happy New Year. And, God Bless.

J.

your daughter has gone through so much and her body has had to withsatnd an awful lot in a shour amount of lifetime, i think that putting her on ght will make her body have to work that much harder to deal with the already issues she has. i know a famuily that did this to their daughter and that child had no medical issues except that she was small...and guess what, the therapy wasn't a success., plus her parents and ancestry wasbn't from a tall familial gene to begin with. look at the whole picture, not just what the drs. think.
good luck.