[tri-med] Re: Alex's Neuropsych

----- Original Message -----
From: "Fawna Lockwood"
> Has Alex ever had an MRA?

No - but its also not on the cards unless absolutely essential because of
the pacemaker. He has had a PET scan and we know that his uptake of glucose
is normal........ (well as normal as they can tell because they don't have a
lot of norms for PET scans in kids) Other than that he has only had CT scans
and an MRI at 12 months.

> I'm trying hard not to laugh here...it's hopeless...ROFL

I knew you would get a giggle out of that :-) as serious as I am.

> Okay, no Philina has never been on any stimulant other then Classic
> Coke.  She works hard everyday at school to earn one.  Sometimes
> they let her drink it there, and sometimes they send it home in her
> back pack.

Well actually that is a thought - use it as a reward - but for whom - the
kid or the teacher LOL At the moment I use it as a reward for mum on
weekends :-) As I said he has less apneas when he has been drinking coke so
he has Coke on Friday and Saturdays so mum has less sleep interruptions when
she is on 24 hour duty.

> Our old beloved Ped, Dr Frye, worried that Ritalin (or anything
> similar) would change her brain waves, and cause her to start having
> seizures.

Similar thoughts - but we arent thinking of seizures as much as simply
changing the levels of hormones and neurotransmitters in his brain. It may
help, but then again the thought creeps in that maybe his brain is the way
it is for a reason and we may create other problems.........

  >>He didn't want to push it, and neither did I.  As I'm sure
> you've figured out by now, I'd rather deal with a naturally hyperactive
> kid, then one with all kinds of side effects from chemicals.

And that is where the dilemma lies - Alex isn't hyperactive at all. He may
have the ADD but he doesn't have the HD part, in fact if anything he is
underactive (not really - he just pegs out early in the day)

The pros and cons lie something like this - a stimulant "may" work. It may
increase his apneas or decrease them
do nothing for his attention or increase his attention and therefore
learning skills
make him hyperactive
do nothing
increase his shapiro's crisis or decrease them..........
effect his sugar levels up or down
or something we totally don't expect..........

I guess its a bit like the anaphylaxis - we work so hard to stop him from
anaphylaxing - not just because of the anaphylaxis but because we have no
idea how he will react to adrenaline (epinephirine). Given his wacko
metabolism we suspect that it will have nasty side effects on his autonomic
nervous system - even panadol (tylenol) does that!!

>>For such a failure to thrive, her
> prescription history sure doesn't back that up.....

LOL - Alex is much the same. The only drugs he has ever had have been ones
that we have "experimented" with to try and help. And as for phenobarb - you
know my thoughts on that - it is NOT a drug for Alex if there is an
alternative. I guess the bottom line is we have to do something, if we can,
soon. He has had maybe 14 days at school this term - and thats not good for
anyone.

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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