[tri-med] Re: [tri-family] Re: always something

----- Original Message -----
From: "Harris Rachel L Civ WRALC/FMH"
>>when she gets excited sometimes ---or just
> bored other times --she seems to like shake ---or react ---her teacher a
few
> years back wanted ut to take to doctor --she tried to say a seizure ---

Aaahhh I know that the first thought is seizures when a child shakes or
zones out but..........
Alex used to do this and we also thought it was a seizure. We were lucky one
time though that he did it during an EEG for us and it definitely wasn't a
seizure.
An ECG though later confirmed that he had a condition known as "long QT
syndrome". Its only recently being identified properly by the cardiac
community and I know a lot of kids now with T-18 mosaic who have a
borderline long QT.
In itself its benign most of the time. But when people get scared or excited
it causes tachycardia and unstable heart rhythms (hence the shaking and
zoning out). When its really bad it can lead to fainting and even death.
Hence the reason that its also called Sudden Arythmic (sp?) Death Syndrome
as well. Many people have it and don't know until they literally drop dead
after a run, getting a shock (pleasant or otherwise) etc.
Its genetic (caused by genes on a few chromosomes). Most cases dont need
treatment, those that do get relief from beta blockers and or a pacemaker.
However certain medications should be avoided, including salbutamol type
drugs, certain antibiotics, cold medicines etc.
I would be asking for a check up from the cardiologist and ASKING about the
QT interval........ sometimes, especially if its borderline, you need to ASK
them to measure the QT interval.

Man must not allow the clock and the calendar to blind him to the fact that
each moment of his life is a miracle and a mystery.
- H. G. Wells

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
                  Families Helping Families On-line

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