[tri-med] Re: question regarding growth

----- Original Message ----- 
From: "Irene Smith" <irene67@xxxxxxxxxxxx>
> I have heard that some children with Caroline's disorder (and there are
only a few) need growth hormone therapy.  I have heard that mentioned on
this list too.  Is the lack of growth apparent initially?  Or does it happen
like Caroline and they just stop growing???  >If so, when do you start this
therapy?

When Alex was 3 we were sent to a pediatric endocrinologist for an
evaluation. (Remember, Alex was making some milestones and progressing, was
walking and had some speech capabilities) We later went in for a GHT in the
office. It was a hypoglycemia induced test. It showed a borderline result
and it was suggested we have a more "involved" testing done when Alex was
older.

When Alex was 9 we went to another ped endo as the prev one had retired. We
had an out-patient hospital test done: the clonadine/argenine GHT test. We
were there for almost 5 hrs for repeated blood draws on a time schedule.
That one showed he was GHD (growth hormone deficient).

We looked at the pros and cons of putting Alex on the GHT. This list was
VERY valuable as we had some great devils advocate discussions. Ultimately
we decided to go ahead. Main reasons: Alex was not way far off
developmentally and HE was concerned about his size. It really came into a
self-esteem issue for us esp since Alex already has the LD and begin
"different" in other areas to deal with.

The GHT involved me ordering his GH from a home health care company and it
was delivered to the door. There was one shot 6 nights per week with
Saturdays off. After a few months Alex began giving himself the leg shots
but couldn't reach around well enough to comfortably do the arms. Thankfully
our insurance looked at the GH as a typical prescription and we only had to
pay the copay. At $500 per vial at that time it was vital. In the beginning
we got 3  vials per month. By the end of treatment it was 5 vials.

A month after beginning the GHT both Alex's reg ed teacher and spec ed
teacher asked me, separately I might add, "WHAT are you doing different with
Alex?????". He'd shown a jump in reading and comprehension skills and they
were amazed. I've heard of others experiencing this but the ped
endocrinologist told me "there is no connection to the GHT and jumps in
other areas". Well, to me that just doesn't make sense because the whole
body is inter-connected and a GHD can affect other areas of "growth", not
just vertical. Anyhow, I know what we saw and what others have experienced
and shard with me. Also, within 4 months of the GHT starting we saw a
strengthening of his body in terms of his muscles. He was suddenly able to
to do sit ups, had more tone in his legs and arms, more endurance.

I'd suggest that if you have questions about Caroline's growth you get an
appt with a pediatric endocrinologist.

It does appear that trisomy 14 has a GHD tendency. I now know of 6 tri-14ers
who have  been or are on GHT and considering that I've only really had
serious contact with double that it's quite a percentage.

Michelle mom to Alex (16, partial trisomy 14 mosaic) and Molly (13)
MichiganUSA


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: