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Could one of your patients have Long QT Syndrome (LQTS)?
Long QT Syndrome (LQTS) is an abnormality of the heart electrical system.
While the mechanical function of the heart is normal, the electrical problem
is due to defects in heart muscle cell structures. These defects predispose
affected persons to arrhythmia, leading to sudden loss of consciousness and,
in some instances, sudden cardiac death. The QT refers to an interval
measured on the ECG. This syndrome can be inherited or acquired.
The frequency of Long QT is unknown, but it appears to be a common cause of
sudden and unexplained death in children and young adults. This is one
family's story.
We are the parents of five children, three sons and two daughters. In
August 1996 we discovered that four of our children have a Heart disorder
known as the LONG QT SYNDROME (LQTS).
Three of our children have suffered from "fainting episodes" over a period
of almost three years without our having found a reason for it.
Our daughter Claire would faint if she became excited, or scared about
anything. The reasons we were given were always different. Our second son
would faint during the night after having a nightmare and our third son had
fainted while watching TV, and in the bathroom, and was found unconscious in
the school playground.
The reasons suggested for causing our children's fainting episodes were as
follows :
- Febrile convulsions
- A virus
- Low blood sugar levels
- Attention seeking
- Night terrors ... vivid imagination
- Low blood pressure
- Epilepsy
AND THEN AFTER ASKING FOR A HEART CHECK
- Long QT Syndrome.
It took us almost three years of doctors' visits and questions to finally
have the correct diagnosis of LQTS. Not enough medical people are aware of
LQTS, and because it's a "supposedly rare" heart condition, it's not even
considered by most doctors.
Because it's a genetic heart disorder, our whole family needed to be checked
also. We did find other family members with the condition.
We are a very lucky family in that we did find out in time to treat for
LQTS. Not all people do find out before having a "sudden death" in the
family.
With all the doctors that we visited, not one suggested a heart check,
although epilepsy was tested for and came back clear. We requested an ECG
to test the heart.
It seemed that our children were so fit and healthy to look at that it
couldn't be related to the heart. We actually surprised most doctors
whenever we suggested that it could possibly be the heart.
Our middle three children now have pacemakers implanted and all four
affected are taking beta blockers lifelong.
We really want to help create community awareness of this little known
condition in order to be able to save lives of young ones affected with
LQTS.
The outlook for LQTS patients with treatment is very good. The hard part is
having the correct diagnosis made in the first place.
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