Living with Pediatric Epilepsy Letting Kids be Kids Erin Conway, MS, RN, CPNP
Seizures and Epilepsy • 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 • 70% of children with Epilepsy will outgrow it
Common Questions • 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?
Routine Medical Care and Epilepsy • 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?
Education/School placement • 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
Can I let my child go out and play? • 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.
Video Games and Seizures • 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.
Video Games and Seizures • 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
Coping with Epilepsy • 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.
Coping with Epilepsy • 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?
References • 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.