[tri-med] Re: long qt

----- Original Message -----
From: "Mark and Jayne Wright"
> What's the difference between a pacemaker and an implantable cardioverter
defibrillator (ICD)??

In lay terms not a lot - technically, a lot.
An ICD is the newest in the range for this type of problem. Its like a
portable, personalised version of what you see on TV - it jolts the heart
back into a regular beat when an arrhythmia develops. That is the persons
own heart does what it should and the ICD monitors each heart beat and will
only cut in when there is a need because of an irregular heart beat. When it
cuts in it does so by defibrillating the heart (jolting it back into a
regular heart beat with a small electrical shock). It doesn't create a heart
beat like a pacemaker, it just gives small electrical jolts to make the
heart work on its own. A pacemaker on the other hand creates a heart beat
that follows a regular pattern according to how its programmed. eg Alex's
pacemaker only takes over and creates a heart beat when his own heart gets
too slow, below 60 bpm. Soleah's pacemaker creates every heart beat because
her own heart can't, probably at a rate of 80 or 90 bpm or there abouts. The
newer ones adjust automatically to body demands eg with exercise.

What I want to see done with Alex's is an upper limit to be set so that when
Alex develops a fast heart beat, say above 150 bpm the pacemaker takes over
and keeps the heart rate within normal limits. At the moment Alex is having
regular episodes where his heart rate is going above 150 bpm (up to 200 bpm
and above) The risk of an arrythmia developing at those really fast rates is
very, very high and it may well account for some of his fainting and
"falling asleep" during the day. At the moment his pacemaker does nothing
for these times, and only cuts in when he has the rebound bradycardia. If
his heart were to stop totally it probably would not save him. The idea of
the pacemaker is to stop his heart from stopping totally.

Alex's ped wants his pacemaker changed to an ICD - but we will wait until
its medically necessary or the pacemaker needs changing because of the
surgery, not to mention the cost involved. When Alex's pacemaker was
implanted ICD's were new and still essentially experimental especially in
children. Besides the prime reason for Alex's pacemaker was his Shapiro's
crisis and resultant bradycardia and low blood pressure not Long QT. That it
will help with Long QT is a bonus.

"It is from numberless diverse acts of courage and belief that human history
is shaped. Each time a man stands up for an ideal, or acts to improve the
lot of others, or strikes out against injustice, he sends forth a tiny
ripple of hope, and crossing each other from a million different centers of
energy and daring those ripples build a current which can weep down the
mightiest walls of oppression and injustice."
- Robert F. Kennedy -

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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