Growth hormone therapy and noonans

Noonan syndrome
#1

My son has noonan’s syndrome and the endocrinologist wants us to start him on growth hormones but his geneticist does not. The geneticist says children with Noonan’s often dont respond go growth hormones and need a large dose, and a larger does comes with more side effects. She also said children with noonan’s syndrome are more susceptible to cancer and growth hormones therapy (GHT) would not be good if that’s the case. She said there are all new developments from within the last 6 months (today is 11/19/08). What have other people’s endocrinologists and geneticists said about GHT and Noonan’s?

Thanks,
Lynn
mom to matt

#2

Hi there.
I have NS, and was ‘forced’ to be given Growth Hormones by my Father when I was 12 or so. I remember that I didn’t necessarily have any side-effects to them, yet they didn’t do me a hell of a lot of good either. They would only work to a point if there were going to work.

This is going back almost 20 years, so I can’t recall the exact dose that I had, but it was a good syringe full every morning in the leg. Both legs were black and blue, and every time we travelled overseas it made it very dodgy-looking for us!

#3

Hi Lynn,

My name is Madeline and I’m mom to Henry (age 4). We started Henry on Growth Hormones after much deliberation. We have seen an incredible increase in his growth (specifically height) over the past six months. I was so nervous about the whole needle thing…but if you’re interested, I can share with you the pictures I took (I had to make a ‘how-to’ booklette for my mom when my husband and I went away on a little vacation).

The cancer thing is a bit misleading. What I’ve learned is that the hormone does not cause cancer, but if cancer is already present, any additional growth hormone might expedite the rate of increase in cells. It is quite expensive and I know it is most effective when started early (they wanted us to start prior to 4 years old). Let me know if you’d like more info.

Take care,
Madeline