[tri-med] Re: Anyone have any insight or advice???

----- Original Message -----
From: "Cindy Polson"
>>I have heard that GHT will
> help with muscle development and some think it helps with cognitive
ability.

Hi Cindy,
I haven't officially welcomed you to the list as yet and I apologise. I have
been too wrapped up having my own pity party :-(
A huge, if somewhat tardy, welcome to you and Miss Meredith.
Regarding growth hormone. When Alex was diagnosed as being hypoglycemic the
endocrinologist wanted him tested for growth hormone deficiency, when he
found that he had T-18 he insisted. Like Joanne and Michelle his endo also
insisted that he be given the longer stimulation tests as he said the ones
done by single blood draw were unreliable. (growth hormone is not produced
evenly throughout the day - its actually produced mostly at night during
certain sleep cycles. It is also very rapidly broken down by the body)

The reason that the endo wanted Alex tested when he found out he had T-18
was because he actually had a number of children with chromosome 18
disorders who were on growth hormone therapy (GHT) and doing very well
despite the fact that they were only borderline deficient or not deficient
at all. He didn't have them on for growth but for the other "side effects"
of increased muscle mass, increased appetite and to some degree the
cognitive benefits. I did speak to some of the mums and they loved the GHT
for these reasons. However as Michelle said - doctors will tell you that
these "side effects" do not really exist and that there has been no study
done but the mums all report that they have noticed these gains.

The Chromosome 18 Registry did a study on GHD in 18q deletion syndrome and
supposedly almost all children with 18q deletion were deficient. The study
supposedly finds that there were HUGE gains in cognitive development -
however I have not seen the actual study and it has never been published. It
was presented at the Registries 2000 conference and I have the conference
handouts for this segment but they don't mention this part at all...........
Claiming that growth hormone increases cognitive ability is very
controversial, mainly because of the cost of GH. If people thought that GH
was a "smart drug" all the yuppies would have their kids on it - and
although I do subscribe in some ways to the conspiracy theory of Big Brother
I really doubt that the drug companies would let big brother keep this sort
of validated study under wraps.
Jude (BTW welcome back Jude) is the T-18 rep for the registry so she may be
able to find out from Janine more about the study.......

With Alex it turned out that he is definitely NOT GHD - in fact at 6 years
of age he is now off the growth charts on the high side - as a baby he never
even made it onto the charts. No one can explain why he is so tall. His
weight has always been a problem but in the last few months he has suddenly
developed hunger and is getting easier to feed. He is now even asking for
dinner if I am late!! and eating it in a reasonable time frame of 30 - 45
minutes instead of 2 hours +

You asked why Meredith didn't seem to be progressing like other children -
please, please dont beat yourself up on this!!! All our children are TOTALLY
unique and develop at their own pace. Did you say that Meredith had a birth
injury as well? Or is that someone else? You said that Meredith is partial
T-18 - do you have the exact karyotype? (is it q or p?) and how does she
compare on the developmental charts for "full" T-18??

The lights are a great idea for stim!!! Has your therapist suggested "the
little room"?? The little room can be a great tool for our kids. I did my
own "stim room" for Alex with a play pen and based on my therapy bents (I
was an OT in my before Alex days) of NDT and sensory integration.

I hope that helps some sweet.......

Love comforteth like sunshine after rain.
-William Shakespeare

Keep Looking for Rainbows!!!
Karen, Mum to Alex (6, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

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

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