[tri-med] Re: cardio experts?

----- Original Message -----
From: "Glenn&Susan Hardy"
>>when the pead showed me
> the report from the cardiologist it said that her qrs complex was 449
> millisecond and 450 millisecond is considered long

OK Susan,
You are now the fifth person with a child who has T-18 mosaic who also has a
borderline long QT, all of whom are, for all intents and purposes,
asymptomatic.
Alex is one and my mummy's "gut instinct" is kicking in on this, that there
is something in it. As I said Alex is asymptomatic, but he does have these
"spacey" episodes, not seizures, and also times where he simply "falls
asleep" for a few minutes. Until he got his pacemaker I wasn't overly
concerned but the pacemaker is picking up arrythmias at times but of course
not when we have a holter monitor on to confirm one way or the other!!! The
times for some of these (not all) I can definitely relate to his "weird"
times.

His last pacemaker download had some good traces and the tech said he
thought that the episodes were genuine but I havent heard back from his
cardiologist - trying not to be paranoid and I have total faith in his
cardiologist. I may chase him up on that one now though.

I do follow long QT medicine precautions though - do you go that far?? I
simply say to his doctor that he has a borderline long QT and he is happy to
look at alternatives.

Wind moving through grass so that the grass quivers. This moves me with an
emotion I don't even understand.
- Katharine Mansfield

Keep Looking for Rainbows!!!
Karen, Mum to Alex (7, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
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