An underlying genetic disorder is often the cause of sudden
cardiac death in young people. These diseases claim as many as 700 young lives in Canada every year. While the exact prevalence of these diseases is
unknown most experts would agree that 1 in 500 is not an unreasonable estimate of the number of young people carrying a potentially lethal gene.
A good starting point for determining if your child may be affected is to
complete both a Patient and Family History.
At important times in every child’s life take a moment to
complete this questionnaire.
·
When starting Kindergarten
·
When starting Grade 5
·
When starting a competitive sport
·
When starting a prescription drug
·
When starting High School
·
When starting University
·
Anytime you are made aware that your child has
fainted
Encourage children to self-report symptoms described in this
questionnaire including extreme shortness of breath, palpitations, extreme
fatigue and brown-outs during physical activity. Insure that schools, clubs and sport leagues have a
mandatory reporting policy for fainting.
Investigate the family history of both parents. When
speaking with relatives and long-time family friends ask them if they are aware
of any unexplained or presumed cardiac young person deaths in your family tree.
·
Any unexplained death of a person under the age
of 50 should be considered. Drowning and motor vehicle deaths, especially
unexplained single vehicle accidents should be included.
·
A key piece of the puzzle for one Canadian family
was the story of an 18 year old relative
that died from auditory startle – in Italy, in the 1920’s – more than 80 years
before the diagnosis
Patient History
Questions
1.
Has this child ever fainted during or shortly
after physical activity?
2.
Has this child ever experienced extreme
shortness of breath, extreme fatigue or “brown outs” during physical activity?
More so or different than other children?
3.
Has this child ever fainted as a result of
emotional distress or excitement?
4.
Has this child ever fainted from auditory
startle such as an alarm clock, a door slamming or any unexpected noise?
5.
Has this child ever fainted from any cause?
6.
Has this child ever sustained an injury as a
result of fainting?
7.
Have any of this child’s faints involved seizure
like activity?
8.
Has this child ever been diagnosed with a
seizure disorder such as epilepsy?
Family History
Questions
1.
Is there any history of unexplained early death
on either side (maternal/paternal) of this child’s family? Include parents,
siblings, grandparents, aunts, uncles, cousins. Go back as many generations as
possible.
a.
More than one early death in the family?
b.
Unexplained death of family members under age
50?
c.
Unexplained death of family members under age
35?
d.
Any deaths occurring during or after intense physical
activity? Running, swimming, cycling, soccer, hockey.
e.
Deaths of undetermined origin or “presumed”
cardiac origin
f.
Are there any SIDS deaths (Sudden Infant Death
Syndrome) in the family?
g.
Are there any deaths attributed to seizure
disorder or epilepsy?
2.
Is there any member of this child’s family that
has a history of unexplained fainting or seizures?
I have answered “Yes”
to one or more questions
If the answer to any of these questions is “yes” you will
want to consult with the child’s physician. The more “yes” answers you have the
more important it becomes to see a doctor. If you have a “yes” answer in each
of the Patient History and Family History sections you may wish
to inquire about a few simple, non-invasive tests such as ECG and
Echocardiogram.
If there is suspicion of a possible cardiac rhythm disorder
in any member of your family it is important to seek definitive answers. Most
of these diseases are inherited through an autosomal dominant gene which means
that they affect males and females equally and if one parent carries the gene
on average half of their children will acquire the gene and the disease.
Positively identifying one family member should begin a process of finding
others. Once identified there are a number of available therapies that provide
excellent protection against Sudden Cardiac Death.
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