[tri-med] Re: GHT

----- Original Message -----
From: "Nicole Jones" <jones@xxxxxxxx>


> What kind of testing do they do to check if your body is producing enough?
What >prompts the investigation: slow growth, not maintaining their curve?

Here's our GHT experience.

When Alex was born they missed his trisomy because of the mosaic portion of
the diagnosis. So for the next 12 months we went from specialist to
specialist trying to figure out what was wrong with our baby. One of the big
questions was why isn't he growing.

Fast foreword. We have the trisomy dx and am again sent to a pediatric
endocrinologist. It is shortly before Alex's 3rd birthday (1990). She orders
a test. It's done in the office and takes an hour or so. They drop the blood
sugar drastically (hypoglycemia). It shows Alex to be borderline deficient
at that time. She suggests a "longer more difficult in-patient test" to be
done when he's older.
This is all about the time they are in the process of switching to synthetic
gh and getting away from the gh made from dead bodies. The second type of gh
caused some diseases in those using it.

This ped endo quits working and closes her office so we don't go back.

It's now 1997-98. Another tri-14 parent "finds" me via "The Magic
Foundation" (for those affected with growth disorders). We communicate and
she leads me here (Joanna mom to Marcus). Marcus was just starting GHT at
that time. Joanna shares infor with me from the pharmaceutical company, who
manufactures GH, showing a study done on 5 individuals with GHD (growth
hormone deficiency).
Since that time (after Alex began the GHT) there have been 4 other t-14's on
GHT. That's a high number given how rare the t-14 is in my opinion.

This starts the ball rolling again and so off we go finding a ped
endocrinologist has moved into the area 20 miles from us (previously it was
nearly 2 hrs). Make an appt and off we go. He wants to order the longer test
the prev endo had discussed.

I had been on this list for a short while when all this started and shared
our concerns/thoughts about the GHT, pros and cons. Many of you may recall
this. lol   People were very helpful in sorting things out and Karen played
Devils Advocate with me which really helped Jim and I explore just what it
all meant, how we felt and what it meant/might mean to Alex in the future.
She'd also pointed out that she knew a large number of tri-18ers who'd gone
the GHT route and they not only grew in stature but had jumps in ability.
Yes, there are some possible side effects to the GHT, one of which is a rare
incidence of brain tumor.

So, after many, many hours of discussion, research, more discussion and soul
searching Jim and I decided to go ahead with the testing. It was not a
decision made lightly at all. Just because it was right for Alex, our
situation doesn't mean it is for everyone. Remember, Alex is a relatively
healthy child who is mobile, makes decisions for himself etc. This
definately factored into our decision.

We had also discussed it with Alex sharing what it would mean if he was GHD
and HE wanted to see. Alex didn't like the teasing he endured, not being
able to do things his peers were doing (carnival rides etc), wondering if
he'd be able to drive, wearing "baby clothes" when his peers were not.

The test is scheduled--Clonidine/Argenine Test. The patient has to be asleep
to do the testing as that is when the majority of GH is produced. We are
told to plan on being there approx. 6 hrs.

We take books, games, videos. We go into a large room with a tv/vcr and Alex
gets hooked up to an IV. They take some baseline tests. Then they administer
the Clonidine to make Alex sleep. It takes nearly an hour for him to go
under.

Another baseline is done after he's been asleep a bit.

Then the Argenine is administered. I can't remember the exact intervals, but
think it was every 30 min, for 4 hrs so they had 8 blood samples plus the 2
baselines. Maybe some 15 min intervals........can't remember!

The testing showed a GHD. In addition, Alex's bone age study (one x-ray of
BOTH hands/wrists) concured the delay. Since Alex was 6 months old he'd
pretty much had a bone age study done each year. Each time he had 2.5 yrs or
more  lag in bone age vs chronological age. Bone age study is generally the
first step in identifying a growth problem.

We started with the GHT and it's one shot per day although in Alex's case he
got to pick one day "off" per week (had to be the same day) and he chose
Saturdays for sleepover purposes.

 It is expensive but fortunately our insurance company saw it as a
prescription for a medically diagnosed condition so we paid our highest
prescription fee for a "brand name" prescription ($40). When Alex started
GHT his monthly dose was $2000. As they grow the dose increases (based on
weight). At the end of treatment his monthly dose cost was $3000. We had to
pay out of pocket for syringes.
At that time there were other avenues for payment if it wasn't covered by
insurance. "The Magic Foundation" had info on that and I was told that the
pharmecutical companies often would discount/donate the medication for
children.
A home health care company took care of our GH needs. The drs office set it
up. The hc company did all the paperwork, made sure it was a covered benefit
and then set up ordering/delivery of the GH (it has to be refrigerated). I'd
call to place an order (after the drs office faxed a prescription every 4
months) and it would come to the door.


After approx. 6 months or so Alex begain giving himself the injections in
his legs but we still did the arm sites because he couldn't comfortably
reach the back of his upper arm. He wasn't comfortable with the abdomen site
so we just rotated the legs/arms.

In the first year Alex grew 5 inches. He had NEVER grown 5" before in such a
short time in his entire life. He had good growth for a few years.

Here's an interesting aside, 4 weeks after beginning the GHT both Alex's
spec ed and general ed teachers said to me separetely "WHAT are you doing
with Alex?". They had SEEN a jump in his reading skills, his general
academic ability and they wondered what was going on. As I'd mentioned
above, Karen had said that t-18's were showing signs of developemental
increases with the GHT. We also saw Alex get "stronger". In his martial arts
class, after having nearly 3 yrs where he couldn't peform a full sit-up he
managed to do it after the GHT (approx. 3-4 months). We could feel it in his
arms for sure.

I mentioned this to the ped endo and short of patting me on the head and
tsk-tsking me said "No relevence to the GHT". Well, I know what WE saw, what
another tri-14 parent saw and what Karen's contacts saw. It's crazy, if
there isn't enough of the growth hormone in the body how can the medical
profession dismiss that it affects the growth in multiple areas and not just
vertical height??????? My own personal feeling.  :0)

Alex's growth slowed each year on the GHT until another bone age study
showed that his ephysis were closing. Those are what are also called "growth
plates"--the open areas at the joint spaces in bones. Because of this the
GHT was discontinued.

Alex is approx. 54" now. The size of a 10 yr old. Odds are he won't grow
much more. And this DOES affect Alex. He always gets picked on but generally
just lets it go. This year it's really hard for some reason and we're having
issues with it (or should I say we're having trouble with ALEX having issues
with it). Perhaps a teen thing?
Add in that at 16 girls are figuring into the equation and they don't really
seem to be interested in the "cute" little boy. Alex isn't a happy camper in
school right now. We have however curtailed the upper classman who couldn't
keep his hands off Alex (holding him up-side down etc) after the principal
became involved.


Whew, this was way longer than I'd anticipated when I sat down to answer.
Almost an hour and a half of thinking/remembering/writting! lol

Hope this helps.

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: