Fi was on GH treatment for 2.5 years. It was not something we took lightly. I read every piece of research that was around both on GH treatment for achon and hypo as well as idiopathic short stature, along with the SAGHE study.
It took us years to find a pediatric endocrinologist who was willing to do the same. She then spent 2 years monitoring Fi's growth, running relevant tests, etc.
Her IGF1 level was on the low normal side, so we had room to increase it safely, this seems to be a typical finding within the hypo common mutation group and probably the main reason why GH treatment is showing more hope than with achon.
After 2 years we cut a deal with our wonderful, trustworthy, listening, conservative but willing endo that we would do a year trial and extend on a yearly basis, our objective was to double her growth rate, if that wouldn't be the case anymore, we would stop the treatment.
This was a deal I was very happy with, I wanted us to try but I did understand that the growth increase can taper off after a year or two and then there is no point to the treatment.
We chose Zomacton because it comes with a needle free device. Took a few weeks to learn it, but we found it very easy, she probably missed one dose in the entire 2.5 years because I forgot.
She had 0 adverse effects, her bloodwork and bone age x-rays were done every 6 months in a pediatric hospital. First year she doubled her growth velocity to 9 cm, second year she landed at 7, we decided to watch for another 6 moths, and when it didn't pick up, we agreed to discontinue treatment.
She was on a low dose compared to the Polak study 0.025 - 0.033 mg/kg.
Overall we gained 10 extra cms in 2.5 years. I think some might choose to continue and play more with the dose, for us, we wanted to stick to our original plan and we knew we were planning limb lengthening anyway.
If anyone has any questions, feel free to email me. I will update this post with the questions (anonymously) and answers as I know this is a topic of interest.
Petite yet fierce - Ramblings of a pathologically information hungry mother about hypochondroplasia, about rearing 3 girls in a foreign country and about all the random thoughts my sleep deprived and over-stimulated brain can come up with.
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