[tri-med] Re: Growth Hormone information

----- Original Message ----- 
From: "Jude Wolpert" <jfwolpert2@xxxxxxxxxxx>

> no i am sure it is the first step screening, a big blood draw.  she has
had
> bone density testing but not bone age.  i think she fell into a group that
> might be considered for ght from that initial screening.  (she has had
> multiple clonidine tests tho...)

When Alex was 3 he had the 'insulin induced hypoglycemia' GH testing done.
It's where they use insulin to drop the blood sugar and take multiple blood
draws.....and the patient is neary unconcious when done. That was so much
fun.......NOT. Scared me to death as I hadn't understood or realized just
how close to a coma they get. Plus I was preg for Molly at the time. It was
'borderline' and the more extensive clonidine/argenine testing was suggested
when he was older as it was an overnight hospital stay. By the time Alex had
that test it had apparently changed as we were only in the hosp approx 6 hrs
and they 'medically' put him to sleep for part of the test.

Alex had bone age studies (1 view x-ray of BOTH hands/wrists that the
radiologist then measures and follows a chart to determine the bone age)
every year from age 1 or so on. He was always at least 2.5 years behind,
until the final bone age that showed he'd jumped (after almost 3 yrs of GHT)
to getting ready to close. That and the fact that he'd really slowed down
vertically as well. If GH is given when the ephisys of the bones are closed
they can cause a forced growth that then bends, bows, breaks the bones and
damages them.
A bone age is generally the very first test ordered when a growth question
is in play. It confused me when you said Kam's never had one but her
endocrinologist is talking GHT....made me wonder what info he/she is using
that I'm unfamiliar with. Other endocrine studies are useful (esp thyroid)
but are not a major determining factor in discussing GH.

Patient awake/1 draw is a 'spot check' and not terribly accurate (like only
looking at 10 cells and not 100 to determine genetic status). They really
need the 'awake and sleeping' levels (GH is mostly produced during sleep).
So those old wives tales of 'the baby needs sleep to grow' are true! lol

Typically they like to see 2 tests show GHD.

>  i said we were not interested into looking into it more at
> this point as i dont want a huge kam to move around.  if she was more
> advanced developmentally and self mobile i would be considering totally
> different scenarios.

Exactly! That's also what makes it so hard to make decisions
sometimes.......having to look at the WHOLE picture of YOUR situation and
what it all means. In your position I'd probably think the same as you are.
Heck, it took us months to decide to proceed with Alex/GHT.   :0)

> is that ok?

Sorry if I've stepped on your toes asking questions and making you answer
questions you may not want to. Guess I'm guilty of thinking that if folks
don't want to answer questions they either take it off list or simply ignore
the question.  :-)

Even though Alex is no longer on the GHT, I like to keep track of what's
current because this is ONE thing that generally comes up when I have
contact with tri-14ers. The majority of those I know has had the testing and
most have been/are on GHT.......makes me think that it's a t-14 thing to
some degree. Many of them have dropped off my radar and I no longer have
contact (worried about the family in Israel with all that goes on there but
that's another story). Granted, that's less then 10 people but hey! So I try
to stay 'up to date' on the GH info. Additionally, I like to keep current
esp for long term effect/problems cropping up that may affect Alex. MAJOR
importance to me.

Sorry if you felt like you were in a 'spot' Jude---I was confused and
wondering if there was some 'new' info/way of doing things out there! Never
my intention to pry and I apologize.

Michelle mom to Alex (17, partial trisomy 14 mosaic) and Molly (13)
MichiganUSA


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
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