Epilepsy is a common disorder of the brain that causes recurring seizures.  Epilepsy affects people of all ages, but children and older adults are more likely to have epilepsy. Seizures are the main sign of epilepsy and most people can control this with treatment. Some seizures can look like staring spells while other seizures can cause a person to collapse, stiffen or shake, and become unaware of what’s going on around them. Many times the cause is unknown.

About 0.6% of children ages 0-17 years have epilepsy in the United States. ² That is about 460,000 children in 2013.¹ Picture a school with 1,000 students—that means about 6 students would have epilepsy. For many children, epilepsy is easily controlled with medication and they can do what all the other kids can do, and perform as well academically.  For others, it can be more challenging.

Compared with students with other health concerns, a CDC study shows that students aged 6–17 years with epilepsy were more likely to miss 11 or more days of school in the past year. Also, students with epilepsy were more likely to have difficulties in school, use special education services, and have activity limitations such as less participation in sports or clubs compared with students with other medical conditions. CDC also found that a larger percentage of children with epilepsy than those without the disorder lived in very low income households (below 200% of the federal poverty level). This suggests other unmet needs for families of children with epilepsy.

Source CDC

General Resources

MANAGING CHILDREN WITH EPILEPSY SCHOOL NURSE GUIDE

Plans

SEIZURE ACTION PLAN FOR SCHOOL (Fill in PDF form)

Seizure Action Plan with Emergency Seizure Care Instructions

MODEL SECTION 504 PLAN FOR A STUDENT WITH EPILEPSY (Sample)

For professionals

Epilepsy Foundation – Managing Students with Seizures for School Nurses

Epilepsy Foundation – Seizure Training for School Personnel

Epilepsy Foundation – Seizure Training for Child Care Personnel

For Students and Families

CDC – You Are Not Alone Parent Toolkit

Epilepsy Foundation – Take Charge of the Storm for middle school students

Epilepsy Foundation – Take Charge of the Facts for high school students

Kid Books

• Wally the Whale
• The Adventures of Oskar: Oskar’s New School. 
• Lee the Rabbit with Epilepsy
• Becky The Brave
• Mommy I Feel Funny
• Let’s Learn with Teddy
• My Thinking Cap (A Coloring Book about Epilepsy)
• A Day with Dot: A Story and Activity Book – This short book features a few different activities and short stories.
• Let’s Learn About Epilepsy – An Activity Book for Children: A number of different activities and stories for elementary and middle school aged children.
• MediKidz – Epilepsy Activity Book: Tends to be for older kids and features quizzes.
• The Great Katie Kate Explains Epilepsy: The Great Katie Kate explains to the kids different types of seizures, treatments, and ways to stay healthy. I think it explains things so kids understand them and want to listen to them.
• Karen’s Epilepsy: What makes this book great is that it shows children how to respond to their feelings about things and how to react to what’s happening to them.
• I have epilepsy, but it doesn’t have me: This book follows an eight year old Jamie on her journey from being diagnosed with Benign Rolandic Epilepsy at age five.
• Taking Seizure Disorders to School: Its a great book for reading to elementary and middle school children.