Growth Hormone

[Guest guest]

Today tim saw the growth specialist. He is 3-4 months into puberty (which I

knew from the changes in him!). The doctor thinks that tim could well stop

growing by about 14 years old (just two years from now) and was a little taken

aback by the fact that I knew this could happen as it has happened not only to

me (once a tall child, now a short adult) to my 18 year old son (once a tall

child now a short adult) and to my daughter (you get the picture!), though none

of us are abnormally short we are all shorter than predicted by our childhood

heights. Ben for instance is 5'7 " , 5 inches short of his original 6 foot

prediction. Anyway, the point being that if tim follows the same pattern (which

the doctor thinks he will) he is starting from abnormally short and so will be

very short. Nothing new, we knew this. For some obscure reason the doctor was

predicting a final height for tim about 25 cm taller than he is now, given his

annual growth rate of 5-6 cm I found this unlikely and said so!

Anyway. I was told that fiddling around with his puberty hormones is not really

an option as it would slow down his growth rate over all- not what he said last

year. Last year he said slowing puberty was probably the only option to keep

him growing til he's 18. But he has conceded that if we can increase tims

height to nearer the average (for A male with DS) it wouldn't be a bad thing.

He is currently treating one child with DS with growth hormone (known to us and

the child is significantly shorter than tim, but sods law she'll grow taller

than him now!!), and has said he'll see tim in 4 months and maybe treat tim with

GH then. He wasn't clear about what criteria he would base his decision on but

did say that ultimately, if he thought it to beneficial, it was up to me to

decide whether we should give it or not.

I know the theoretical benefits and adverse side effects etc of GH. What I am

now wondering is if there is anyone on the list who has actually given this to

their child (with ds) for increased growth and for whom it has been of benefit

(or not) in terms of growth. Did they have any adverse side effects? How did

they cope with daily injections? Any anecdotal evidence really, good or bad,

rather than general opinions. I am trying to make up my own mind and have mixed

feelings. Tim is desperate to be tall, even with GH he'd never be that, but is

it worth the trauma (if there is any) for a few extra inches? At best GH would

give him enough height to be classed as about average height (around 5 foot

ish), at worst we're looking at about 4 foot 4 " . The unpredictable nature of

puberty growth spurts could also mean anything inbetween the two. Its not an

exact science!

sue wong