[tri-med] Re: [tri-mosaic] Re: Re: Alex's Neuropsych

----- Original Message -----
From: <NanlorW@xxxxxxx>
>> Dom has a neuro
> appointment this week. Could I take a copy of your letter about the
testing
> to show the doc? Last summer at the conference, Dom asked the consulting
> neuro about how he sometimes spaces out and is not able to process
> information, the doc told him that it was something that was not really
> related to his tri 18, but more of a learning disability issue. Oh well.

Well yes and no - learning disabilities are how people process or don't
process information in their brains. We KNOW our kids brains are
"different" - but just how remains elusive. Do they process differently
because of the T-18? Probably.........

But without other kids with mosaic T-18 to compare to there is no way that
anyone can say it is or it isn't related to the T-18. It may well be caused
by the different way our kids brains are structured, the different levels of
chemicals and hormones etc etc.

It was the same with the Wilm's stuff - when it was known in one child it
was random, when that one child became 6 or 7 it became more than a
coincidence but something that was more likely to be related to the T-18. In
the last 6 years I have seen that go from a maybe to a fact but only because
of parents communicating and reporting the incidence to John. If a doctor
were to look in the literature it would still be a maybe..........

And I am not aware of any detailed neuropsych reports in the literature. And
Alex's neuropsych couldnt find any either (only IQ tests). It will always be
a load more difficult with mosaicers because there is such variability
between mosaicers. But Dom and Alex are also very similar. I did speak to
her about Dom, particularly with regard to the bi-polar and attention
problems, spacing out etc. She was interested, but also wary without
standardised assessments because of the bi-polar diagnosis. Don't take this
the wrong way but psychs here are wary of these diagnosis from the US
because of different "standards" between countries. In general it is thought
that US doctors are more ready to diagnosis things like OCD, Bi-Polar, ADD,
depression etc in young children and medicate than our doctors are. Thats
not to say that either is right or wrong (personally I think our doctors are
too slow to label at times) just cultural differences again. And a typical
example is Alex - he meets all the criteria for an ADD diagnosis in the US -
but he wont get it here. Not from psych anyway. It will stay as an
"attention problem" - at least for now.

So feel free to share the info and if the doctor is interested I can
certainly put him in touch with Alex's neuropsych via email. When I get the
formal report (will be another 2 weeks away probably) I will send you a copy
for future reference. Sometimes that can come in handy - just like having a
copy of Morgan's hearing tests here does :-))

One day we WILL have a proper data base for all this sort of stuff - I
promise!!!!!

A rich child often sits in a poor mother's lap.
  -- Danish Proverb

Keep Looking for Rainbows!!!
Karen, Mum to Alex (8, 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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