Transcript Living with Pediatric Epilepsy - FACES (Finding a Cure for Epilepsy

Letting Kids be Kids
Erin Conway, MS, RN, CPNP
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A seizure is a brief, excessive discharge of brain electrical activity
that changes how a person feels, senses, thinks, or behaves.
Epilepsy is a disorder in which a person has two or more seizures
without a clear cause.
More than 2 million Americans have epilepsy; 9 million will have
epilepsy at some time in their life.
One in 11 people will have at least one seizure in their lifetime.
Most individuals with epilepsy have normal intelligence, behavior
and are seizure free on medications
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70% of children with Epilepsy will
outgrow it
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Will my child be alright?
Can he/she ever lead a normal life?
Can seizures ever be controlled?
Can I ever leave he/she alone?
Will he/she have to take medicine for the rest
of their life?
What will my friends think?
Will I ever be able to ride my bike again? Play
on my school team? Go to college? Drive a car?
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My child suffers from allergies? Is it safe to
administer allergy medicine?
My child has a cold, is there any medications I
should avoid?
Can my child receive immunizations?
My child was prescribed antibiotics, is it safe to
administer with her seizure medication?
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Most children with epilepsy attend regular
classes, although in some cases they need
special aides to work with them.
Special education programs- instruction in
regular classrooms or separate facilities for all
or part of the day.
If child is not doing well in mainstreamed
classroom, parents should meet with teachers
to identify the problem
Comprehensive Evaluation
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YES!!!
Can he ride a bike?
Can she swim?
Can he play football?
Can she go to sleep away camp?
Should we tell the coach he has epilepsy?
Common sense goes a long way. Each decision
should be on an individualized basis. The goal
should be safety and a lifestyle as normal as
possible.
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Video games do not cause epilepsy.
Children who are photosensitive, and in whom
flashing lights or flickering images can trigger
seizures or epilepsy waves on EEG may have
seizures playing video games. This occurs in
approximately 3 % of people with epilepsy, so
almost all children who have epilepsy should
be able to play video games without seizures.
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Play in well lighted room
Maintain distance between the screen
Avoid playing for long periods of time
Take regular breaks
Stop the game if strange/unusual feeling
develops
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Be truthful and simple.
Reassurance
You can’t catch a seizure as if it were a cold.
Fear, Grief, Anger are all normal responses.
Acceptance takes time. Acceptance means that
you consider your child a normal child who
happens to have seizures.
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How do you feel about having epilepsy?
How do you think other kids react to you
because you have epilepsy?
Do you understand what the doctor said to
you?
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Bazil, C.; Chong, D.; Friedman, D. Epilepsy. New York, NY. Oxford University
Press; 2011.
Devinsky, O. Epilepsy: Patient and Family Guide. 3rd edition. New York, NY:
Demos Medical Publishing, LLC; 2008.
Freeman, J.; Vining, E.; Pillas, D. Seizures and Epilepsy in Childhood: A guide. 3rd
edition. Baltimore, MD: Johns Hopkins University Press; 2002.