[tri-med] Alex's Neuropsych

Well I got the "official" verbal report from the neuropsych today (we have
been playing phone tag for the last week!!)

No answers as to what is going on - but we did get some information.

While on the surface it appears that Alex's memory has been deteriorating
its not. Memory is fine. What is at fault is attention.

Specifically she said that he shows a slowing of attention (so his attention
fades of he has to concentrate), he drops tasks (when asked to do two things
at once eg write and listen he can't - he can only do one or the other). He
becomes "locked" with his attention (he starts attending and can switch off)
and he becomes stimulus bound (eg he starts erasing and then keeps erasing
until he has a hole in the paper, he starts picking the rubber, his finger,
his lips etc and can't stop)

The neuropsych can't say that its a deterioration because there were no
formal tests before to assess any change - but from the observational
reports from teachers and myself it does appear to be a deterioration.

Why of course is another thing we have no real answers for. The results are
consistent with major hypoxic events - but I am fairly certain that he has
had none in the last 2 years. Hand me a gun of I have missed one!!!! If it
is she thinks it will correct itself.

On the surface and what she is documenting is that the problem is with
attention and executive functioning - now thats the hard thing to explain -
executive functioning are those things done by higher cortical processing.
Things like planning, reasoning, transferring what we have learnt to other
things. All the stuff we were talking about the other day.

His IQ results were consistent - all the subscores were uniform (so no big
differences between subtests). Overall a little lower than his last one 2
years ago but not majorly. He is still in the normal range, but the lower
end. I dont want to agree with that, but yeah I suppose I concur :-))

The neuropsych and the researchers dealing with CAPD and ACC are also going
to talk and share their information and findings - this I am excited
about!!!

I have already discussed the results with the pediatrician and we still have
to run it by the neurologist but......... the test results have made him
even more keen to try a stimulant, specifically he wants to try ritalin. I
have agreed to weaning him off the Gabitril - it doesn't seem to be doing
anything except sedate him. However both the ped and I are concerned as to
what effect Ritalin may have on his Shapiro's. He thinks it may help his
central apneas but what it will do on a neurochemical level we arent sure.
If we do try it the ped wants to start with a VERY small dose and then
gradually increase it. He did say that if it works it will really work - if
its not going to work it wont.

I am not sure what I think - I trust our ped implicitly. Heck he is the ONLY
person I would trust with Alex's life in a crunch. And he is not one to rush
into treatment, especially stuff like Ritalin. And I agree with him that we
have to do SOMETHING. The change in Alex is just getting more and more
dramatic. I just dont know...... Can't work out if its a gut instinct or a
fear of the ADD label.

I am going to start him back on the Efalex though. Maybe I can do this
"naturally"????

Anyone have a trier on a stimulant?? (Other than caffeine or coke - yes
Fawna I am seriously thinking about sending a can of coke to school for
lunch every day - it does work and he has less apneas when he has coke in
the evening - but would Ritalin be better physiologically??)

Thoughts?? Deb??

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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