[tri-med] Re: Growth Hormone information

----- Original Message ----- 
From: "Jude
> no i am sure it is the first step screening, a big blood draw.

It was probably a blood draw that did all the tests for pituitary function.
(thyroid tests and certain GI problems). As part of that they probably
measured something called IGF-1. Growth hormone causes IGF-1 to be released
in the body so if you are short on GH then you will be short on IGF-1. Its
not an absolute conclusive test because GH production is cyclic and you may
just not be producing GH when they do the test - but its a quick and easy
way to get a fair idea of GH status.

Alex had that particular test because he was so stressed after the fasting
study even an arginine/clonidine challenge wouldn't have been accurate.
(they had planned on doing an arginine challenge but changed their minds
after the seizure)

In truth there is no one test thats 100% accurate on its own for GHD - they
need to do multiple tests to make the determination eg clonidine challenge
(or insulin, arginine, L-dopa etc etc), family history, bone age etc etc are
all used together.

she has had
> bone density testing but not bone age.

They may have done a bone age at the same time and just not mentioned it. A
bone age is simply an x-ray of the wrist, there is nothing special about it.
Whats special is looking up the results on an index.

When we were doing all of this for Alex he was 2 years old and everything
was borderline. By that I mean his IGF-1 was ok - just, his bone age was 18
months behind - which could be called either way as far as GHD is concerned.
He had idiopathic hypoglycemia - an indicator of GHD and so on.

He never did get the GH as we decided to wait. At last measure his bone age
was more than 2 years ahead of his chronological age. That in itself is also
"borderline" as being "too" old. Whats significant (and of concern) for Alex
is that he went from 18 months behind to more than 2 years ahead in only a
couple of years. To put it another way - he went from below the third
centile (typical trisomy growth) to close to the 100th centile within 18
months. He is now over the 100th centile and still climbing.

>>If she was more
> advanced developmentally and self mobile i would be considering totally
> different scenarios.

I agree, my greatest concern is that people will use GH for the wrong
reasons and expect miracles. Like everything I just hope everyone weighs up
the pros and cons of any therapy.

> is that ok?
Its us that should be asking YOU if its OK to ask you to share. Its not an
easy decision at the best of times, none of these are. I know you did your
research though - and if things change you can also change your mind. Sure
the younger you start the more growth potential there is, but even thats not
guaranteed.

Love many, hate few, learn to paddle your own canoe.
  -- American Proverb

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (9 years, T-18 Mosaic)
http://members.optushome.com.au/karens

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

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