[tri-med] Re: Growth Hormone information

----- Original Message ----- 
From: <victorian17109
> I am telling ya!  Why would they fight this if according to this
information and others it does help.

They have looked into it and done further studies believe me. The problem is
that scientifically it doesn't hold up as being as great as it sounds. There
are also significant side effects (negative) in giving GHT to anyone who
isnt GH deficient. In the literature these far outweigh the benefits of
"maybe" a few IQ points and a little increased tone. They may be worth the
risk for the growth, but not for a few IQ points alone.

Many many parents anecdotally report the increase in tone, IQ and so on.
They have for years. The problem is that its hard to do an ethical
replication of the increase. Its also hard to know if it would have happened
anyway. Even in that particular study you are looking at, not every child
enjoyed the benefits and there were definitely huge variations in the
recordable results. In fact the inreases correlated with specific deletions.
In fact the greater the problems when the child started the less the
increase. But I digress, I dont really want to get into a particular study.

Remember human growth hormone is the drug that they are racing to try and
develop a test for before the Athens Olympics. Its the drug that athletes
and body builders are choosing to give them an edge over their competitors.
Its also destroying the lives of many people in the process.

I have seen the finer details of the study that you refer to - the study was
started and completed years ago. (though they are still collecting data) I
wont go into my own personal concerns with the study but will simply ask one
question - why hasnt it been published? There are problems with the
study............ look below the surface before you jump in.

We went through questioning whether Alex was GHD when he was a baby, mainly
because he has hypoglycemia (often an indicator of GHD) and because of his
poor growth and weight gain, low muscle tone and poor body fat. All possible
side effects of being GHD.

At the time we didn't know he had T-18 though we did by the time the testing
on Alex was completed. That was how I learnt of the partial T-18'ers who had
had GHT without being GHD, Alex's endocrinologist had gotten them the GH
approved. We discussed giving Alex GH even though he wasnt clinically GHD. I
decided against it at the time, and in hindsight I still think that was
wise. I also looked at giving Alex DHEA for his apneas and decided against
that one too.

As soon as the Wilm's link was discovered the endo, who had been so in
favour of the GHT immediately had the treatment stopped for any child with a
duplication that WASN'T clinically GHD.

Because T-18'ers are predisposed to embryonic tumours the risks associated
with GHT, in his opinion, were too great.

We still see the same endo and with Alex we are now dealing with the
concerns that he may be producing too MUCH GH (all on his own). That
excessive GH production may be what is responsible for his newly developed
cardiac problems, his episodes of high blood pressure, and even the four
cardiac arrests he has already suffered. It may also figure into the tight
muscles, episodes of agression, puberty development, advanced bone age and
so on. Not to mention the fact that I am dealing with a medically fragile 10
year old who is 5 foot plus and weighs 40+ kilos (90 pounds) that also has a
spinal problem. Alex is not the only child with T-18 who has been diagnosed
and reported in the literature to be suffering from overgrowth syndrome.

I am dealing with a child who is functioning at near normal cognitive levels
but who has all the medical problems of T-18 and then some. I know most
people would give almost anything for a few extra IQ points and physical
development. But I am on the other side of the table - I would trade a few
IQ points for a healthier child, certainly one who didnt flaunt with death
every day. (she says this after spending the night with a child whose
temperature was hovering around 89 degrees)

The reality is I wouldnt trade Alex for any other child on the list (and
their problems), and I know you wouldn't trade your child for him (and his
problems).

We know that our children are physically different to the rest of the world,
exactly to what extent we are not sure. But personally I wouldnt be rushing
in to something like GH (and the side effects don't stop just because you
stop giving the GH) until I knew that our kids different anatomy can handle
the increase in blood pressure, that their heart muscle can tolerate it and
the extra growth, that there is enough elasticity in their blood vessels.

That its not going to increase the predisposition to tumour growth, diabetes
later in life (we already know that our kids are at an increased risk of
developing insulin resistant diabetes), stroke, behaviour issues and a
myriad of other things. And these are all things we know MAY develop in our
kids anyway.

Maybe GH will make it better, but we need a lot more work before I would be
willing to risk the masters health in gambling with GH for a few possible IQ
points and some more normalised tone.

I am not against GHT - far from it - I actually encouraged Michelle to
pursue it with her Alex - but I have reservations about giving a potentially
harmful supplement to children who are not GHD. In my humble opinion if you
want to increase blood flow and oxygen delivery (which is probably what
causes at least some if not all of the increase in IQ points and muscle
tone) there are far safer alternatives. Join MUMS and explore HBOT. For the
cost of GH you would probably be able to buy your own chamber and then lease
it out :-)) I am also not a fan of HBOT but I think it may be safer than the
GH in some instances. Use the Omega's - that alone increased Alex's
functional IQ score. For better tone keep on with tried an true Bobath and
NDT techniques.

Also bear in mind the benefits of a few IQ points (it is not going to give
you a "normal" range - and the study says that) against a larger and more
difficult to handle child when they (and you) are older.

I know that in some instances I am ultra cautious, and this is probably one.
Who else do you know spent 2 years researching the possible benefits and
side effects of Omega's before she would give them to her own child?? But I
don't think anyone would question the fact that our kids are survivors,
fragile survivors. They live with a very precarious balance on life and I
have to question the reasoning behind that balance. (whether you believe in
God or fate or whatever there is a reason our kids are the way they are -
its part of their balance)

I can't tell you what to do - and I don't want to. I do however urge you to
look at it closely before you make any decisions. Certainly have the GH
testing - you will have a BIG uphill fight getting GH from any insurance
company without being GHD. And unless you are Bill Gates you arent going to
be able to afford it without insurance help.  Talk it over with an
endocrinologist, visit the Magic Foundation website, give him a copy of this
unpublished report (just make sure you let him know of the blastoma risks as
well - they arent mentioned in that study). And then do what we all do -
what YOU think is best for YOUR child. Any decision made as an informed
decision based on love is the right one.

And while you are at it - say a few prayers for me as I decide whether to
give Alex an equally dangerous drug to decrease his growth hormone
production. I too am questioning the wisdom of playing with G*ds balance.

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
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