I have started writing lots of different posts, but my mind is really not on them... I am thinking about meeting with a pediatric endocrinologist. Our pediatrician asks me every time if I would like to. I have been putting it off, but it's time I think.
I have tried to review all the different conflicting studies that are out there... Here are the conclusions I can draw:
- HGH seems to be more effective for children with HCH than ACH
- The typical outcome is like this: first year significant growth velocity change, second and third year still significant change, and then it seems to tail off... Or they haven't really done longer term studies.
- It could make the disproportion worse, eg. elongate torso as opposed to legs.
- According to one study if started around the age of 2 it is a lot more effective than if started later...
What do I think: I am scared to death about the whole thing:
- The whole daily administration, the needles, the mixing of the thing, the dosing.
- The whole discussion with the kids about the daily injections, I don't want anyone to think that Fi is sick, she has a medical condition, but not sick
- The whole side effect, cancer, increased intracranial pressure... etc... thing...
- I watched the easypod video and that makes me feel even sicker than the thought of the needles... this is why I didn't become a doctor...
Why would I still consider giving it a go...: well because I am quite certain that Fi's torso is also shorter not just her legs, so this could help with her adult height. It could also help her keep up with her peers before ELL becomes an option... Also it would be easily available in Ireland in terms of funding.
I think I will ask for a referral, it should take about 4 months to get an appointment, that will give me even more time to read and think and then the endo will properly measure Fi and we can have a chat, there is no harm in that, is there...
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.
The people I have talked briefly with about this haven't been supportive of using GH for kids with hypo. I have also heard of the possiblity of it only working on the 'normal' bones, making the child even more dispotportinate.
ReplyDeleteWell, I have read dozens of research papers and it's not very clear cut at all. They all agree that it works for the first 3-4 years and then the effects kind of cool off... Some studies have found it to cause more disproportion and others not at all for the same mutation... It's very under researched, there is a big study going on now, but there won't be any results for another year or so...
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