RECOGNIZE AND RESPOND TO THE WARNING SIGNS OF PAEDIATRIC ARRHYTHMIAS PREPARED BY PACED PARENTS...
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RECOGNIZE AND RESPOND TO THE WARNING SIGNS OF PAEDIATRIC ARRHYTHMIAS PREPARED BY PACED PARENTS ADVOCATING FOR CARDIAC EDUCATION * PLEASE CLICK ON THE AUDIO ICON FOR EACH NEW SLIDE Sudden Cardiac Arrest Prevention * Audio Seminar for Teachers and Coaches
RECOGNIZE AND RESPOND TO THE WARNING SIGNS OF PAEDIATRIC ARRHYTHMIAS PREPARED BY PACED PARENTS ADVOCATING FOR CARDIAC EDUCATION * PLEASE CLICK ON THE
RECOGNIZE AND RESPOND TO THE WARNING SIGNS OF PAEDIATRIC
ARRHYTHMIAS PREPARED BY PACED PARENTS ADVOCATING FOR CARDIAC
EDUCATION * PLEASE CLICK ON THE AUDIO ICON FOR EACH NEW SLIDE
Sudden Cardiac Arrest Prevention * Audio Seminar for Teachers and
Coaches
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PACED is Parents Advocating for Cardiac Education Copyright
2015 by PACED www.paced.ca Mission To create universal top of mind
awareness and appropriate systemic response to the Warning Signs of
Inherited Heart Rhythm Disorders in Canadian communities Vision
PACED envisions a day when Inherited Heart Rhythm Disorders (IHRDs)
are no longer a leading medical cause of paediatric mortality in
Canada, the number of young people dying each year is significantly
reduced and the majority of at-risk individuals are identified and
receiving effective therapy or better still a cure for their
disease Values To advocate, with passion and integrity on behalf of
all Canadians affected by IHRDs. To respect the voice of all
stakeholders. To generate and disperse revenues ethically and
wisely in pursuit of our stated goals 2
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Dr. Andrew Krahn Copyright 2015 by PACED www.paced.ca Our
research gives us an idea of the scope of the problem there are
almost 200 young people who die suddenly every year in Ontario. A
good proportion of them have unrecognized heart disease. So the
question is: How can we catch this before it happens? says Krahn.
He suggests that more attention be paid to possible warning signs
such as fainting. He believes that teachers, coaches and an aware
public may be key to detecting risk, ensuring prevention and formal
medical evaluation and therapy. I would advocate for careful
screening of people who faint, using questionnaires and education
of healthcare professionals so that when warning signs present
themselves, they recognize them and this information gets passed on
to the right people, he says. From an article on Dr. Krahns
presentation at the 2012 Canadian Cardiovascular Congress
http://news.bioscholar.com/2012/10/hidden-disease-sports-sudden-cardiac-arrest.html
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What are IHRDs ? A group of genetic diseases that predispose
people (children) to sudden cardiac arrest Transmitted by an
autosomal dominant gene: if one parent has the gene on average half
of the children will acquire the gene The disease hides because
there are usually no other manifestations, in every other way the
child is healthy Many deaths occur between the onset of puberty and
the late twenties Copyright 2015 by PACED www.paced.ca 4
Slide 6
Two Types of IHRDs Cardiomyopathies Effect the development of
heart muscle making it weak or thickened and less able to conduct
electricity HCM Hypertrophic Cardiomyopathy - a thickening of the
muscle on the left side of the heart ARVC/D Arrhythmogenic Right
Ventricular Cardiomyopathy a weakening of the muscle usually on the
right side of the heart Channelopathies Effect the pathways that
conduct the hearts electrical signals Long QT Syndrome (1-14)
Brugada Syndrome CPVT Short QT WPW - Wolff Parkinson White - an
accessory electrical pathway not a true channelopathy. Copyright
2015 by PACED www.paced.ca 5
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IHRDs by the Numbers 700 young Canadians, under age 35, die
each year 200 in Ontario 65 in BC 1 in 500 would be conservative
estimate of the disease prevalence Think 2 per High School !!!
About 1.5% of gene positive people die each year Nearly 50% of all
patients have at least one fainting episode prior to their death 5%
(1 in 20) of all fainting episodes (syncope) are a warning sign 33%
(1 in 3) or more of fainting during exercise is sinister The good
news is that 95% of all faints are benign Copyright 2015 by PACED
www.paced.ca 6
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The Warning Signs Fainting (syncope) or seizure during or
shortly after physical activity, especially if it happens
repeatedly Fainting (syncope) or seizure resulting from emotional
excitement, emotional distress, or auditory startle Family history
of unexpected sudden death during physical activity or during a
seizure, or any other unexplained sudden death of an otherwise
healthy young person Copyright 2015 by PACED www.paced.ca 7
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Additional Warning Signs Near fainting (syncope) or Brownouts
Dizziness, lightheadedness (New) Extreme shortness of breath More
so or different than other children Palpitations or Racing Heart
Fatigue more so than what a typical teen complains of Copyright
2015 by PACED www.paced.ca 8
Slide 10
Responding to the Warning Signs Copyright 2015 by PACED
www.paced.ca 9-1-1 for all faints but especially those occurring
during or shortly after physical activity An ECG acquired on scene
by Paramedics may hold many diagnostic answers Immediate visit to
the Family Physician or walk-in clinic for all other fainting
episodes or secondary warning signs. Provide parents/guardians with
information about IHRDs, sudden cardiac arrest and the warning
signs. No return to play until medical clearance has been obtained
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Review #1 Copyright 2015 by PACED www.paced.ca 1. Every year in
Canada ______ young people, under age 35, die as a result of sudden
cardiac arrest. A. 200 B. 65 C. 700 D. 11 2. What percentage of
young cardiac arrest victims had at least one fainting episode in
the weeks, months or years prior to their death? A. 24 % B. 48 % C.
96 % 3. Faints associated with _______ are the most concerning as a
risk factor for sudden cardiac arrest. A. Flu symptoms B. Auditory
startle (unexpected loud noise) C. Physical Activity D. Lack of
sleep E. B and C 4. When a (young) person faints during or shortly
after physical activity ______ A. 911 should be called B. They
should be given a 30 minute rest period before return to activity
C. Parents should be provided with information about fainting and
heart arrhythmia D. You should wait 15 minutes to see if they seem
fine before calling 911 E. A and C 10
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Diagnosing an IHRD Post syncope physicians will perform any or
all of: An Event History Gather eyewitness accounts A Patient
History A Family History Parents have homework An ECG Stress ECG
Holter Monitor Echocardiogram (ultrasound) Cardiac MRI Tilt Table
Testing Genetic Testing Copyright 2015 by PACED www.paced.ca
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Treating IHRDs There are a number of effective treatment
options for patients diagnosed with IHRDs: Pharmacological Therapy
Blockers Surgical Options Catheter Ablation Implantable Devices
Pacemakers and ICDs Lifestyle Modification No intense physical
activity Once identified patients living with an IHRD should enjoy
a long, healthy and productive life Copyright 2015 by PACED
www.paced.ca 12
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Testing First Degree Relatives Dr. Joel Kirsh (Sick Kids,
Toronto) estimates his clinic identifies between 4 and 5 additional
gene positive First Degree Relatives for every index patient
Finding one patient must begin a search for all affected family
members The policies being recommended have a significant
multiplier effect Copyright 2015 by PACED www.paced.ca 13
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Pre-Participation Screening Questionnaire Copyright 2015 by
PACED www.paced.ca 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, fatigue or
brown outs during physical activity? 3. Has this child ever fainted
as a result of emotional distress or excitement? 4. Has this child
ever fainted from auditory startle: an alarm clock, a door slamming
or 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 childs 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 history of
unexplained early death on either side (maternal/paternal) of this
childs family? 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
childs family that has a history of unexplained fainting or
seizures? 14
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A Five Point Cardiac Arrest Prevention Strategy 1. 30 Minute
Arrhythmia Awareness Training mandatory for all Teachers, Coaches
and CPR/AED trained staff 2. Pre-Participation Screening
Questionnaire to be completed by parents/guardians at the time of
enrollment in a new school or a new sport 3. Mandatory 9-1-1
Calling for all Faints at least for all faints occurring during or
shortly after physical activity 4. Mandatory Notification of
Parents/Guardians of all Faints including providing them with
information about IHRDs 5. Mandatory Medical Clearance for Return
to Play the most tragic deaths are those where fainting is ignored
and the child is allowed to continue to participate in physical
activity Copyright 2015 by PACED www.paced.ca 15
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Review #2 Copyright 2015 by PACED www.paced.ca 1. Event History
is an important part of diagnosis. Eyewitnesses should be asked
about: A. The presence of seizure like activity B. The minutes
leading up to the event C. Whether the patient was able to use
their hands and arms to break the fall D. All of the above 2.
Family History often holds the key to diagnosis. Parents should be
asked about A. The unexpected or sudden death of family members
under age 35 B. Only those deaths that have occurred in the last 20
years C. Any crib deaths or SIDS (Sudden Infant Death Syndrome)
deaths in the family D. Only deaths in the patients maternal family
E. A and C 3. Most children have a definitive diagnosis after two
simple, non-invasive tests A. Genetic Blood Test and Cardiac MRI B.
Tilt Table Testing and Stress ECG C. ECG and Echocardiogram D.
Holter Monitor and Cardiac MRI 4. Controlling heart rate and rhythm
to prevent cardiac arrest often requires A. Taking one Beta Blocker
each day B. Wearing a Pacemaker or ICD C. Open Heart Surgery D.
Lifestyle modification E. Any combination of A, B and D 16
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State or Organization Awareness Education Pre Par QRemove from
Play / 911 Return to PlayInform Parents Pennsylvania HB1610 - 2012
Mandatory for Coaches. Annual Yes. Signed by parents annually Yes.
Mandatory after any syncope Yes. Cleared by licenced HCP Yes.
Website and handouts New Jersey S2367 (39-0) Mandatory for Coaches.
Annual Confirm receipt of pamphlet Yes. Mandatory for any syncope
Yes. Cleared by licenced HCP Mandatory prior to participation
Maryland HB0427 (136-0) Yes. Mandatory for all Coaches Confirm
receipt of information Yes. Mandatory after any syncope Yes.
Cleared by licenced HCP Mandatory prior to participation Indiana
HB1178 ( Yes. Mandatory for all Coaches Confirm receipt of
information Yes. Mandatory after any syncope Yes. Cleared by
licenced HCP Yes. Parents receive info sheet California Inter -
scholastic Fed. Yes. Mandatory for all Coaches Yes. Signed by
parents annually Yes. Mandatory after any syncope Yes. Cleared by
licenced HCP Yes. Parents receive info sheet Ontario Private
Members Bill Yes. Mandatory for all Coaches and Teachers annually
Strongly recommended Yes, Mandatory after syncope Yes, Cleared by
licenced HCP Yes. Prior to participation and post syncope Laws and
Regulations for SCA Prevention
http://www.simonsfund.org/sudden-cardiac-arrest-legislation-by-state/
Copyright 2015 by PACED www.paced.ca 17
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http://www.millerthomson.com/en/publications/newsletters/education-law-newsletter/september-2014/keeping-abreast-of-
the-standard-of-care?utm_source=Mondaq&utm_medium=syndication&utm_campaign=View-Original
September 2014 Keeping Abreast of the Standard of Care: Automated
External Defibrillators in Schools Gillian Tuck KutarnaGillian Tuck
Kutarna, Guelph In April of 2009, grade 5 student Bezawit Chanyalew
suffered a cardiac arrest during gym class at her Vancouver school.
Before emergency workers could arrive, she suffered brain damage
due to a lack of oxygen, leaving her with severe cognitive and
physical disabilities. The School Board recently settled her claim
out of court for $1.7 million. The allegations of negligence
levelled against the Board raised some interesting questions about
the standard of care to which school boards may be held. Two days
prior to the incident, the school Bezawit attended received a fax
stating that she had a congenital heart condition known as Long QT
Syndrome, putting her at increased risk of seizures and cardiac
arrest, especially if she engaged in physical exertion. Bezawit was
running in a 100 metre relay when she collapsed. The Statement of
Claim filed against the Board alleged that the Boards school was
negligent in two ways: first, that after receiving the fax, the
school should have immediately developed a protocol to minimize
Bezawits risk of injury; and second, that the school should have
obtained all the information necessary to ensure Bezawit was safely
able to participate in physical education class. Copyright 2015 by
PACED www.paced.ca 18
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Submit your Questions to Blake at [email protected]@paced.ca
Answers Review #1 1.C, 2.B, 3.E, 4.E Review #2 1.D, 2.E, 3.A, 4.E
Copyright 2015 by PACED www.paced.ca 19
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Thank you for Learning the Warning Signs Parents Advocating for
Cardiac Education - PACED Blake Hurst, Co-Founder 29 Mericourt Rd.
Hamilton ON L8S 2N5 905 527-0462 [email protected] www.paced.ca
@rhythmichearts Copyright 2015 by PACED www.paced.ca 20