Epilepsy and School

Epilepsy and Your Child’s School

Most children with epilepsy attend school and can participate in all activities. Some may need to take medicine at school, require help with certain subjects, or be given extra time on tests. They may have seizures at school sometimes. With more than 300,000 school-age children who have epilepsy in the United States, none of this is that unusual.

Going to school can be stressful for children with epilepsy. They may worry about having a seizure in class or how other students will react. Parents are also anxious. They often worry that their child’s teacher may not know how to handle an epileptic seizure, or that their child may be treated unfairly because of epilepsy

Epilepsy Education for School Personnel and Parents

While it would be nice if every teacher, coach, nurse, and principal in the country was well-informed about epilepsy, unfortunately this isn’t the case. Parents of children with epilepsy will probably have to get involved in some situations, and do some teaching themselves.

Take the Initiative With Your Child’s School

The best way to prevent misunderstandings about epilepsy at school is to step in early. At the beginning of the year, go talk to your child’s teacher and school nurse. Explain that your child has epilepsy. You may want to take some brochures about the condition. Getting the right information to the right people at school early can make a big difference in your child’s school experience.

Getting to Know Your Child’s School and the Staff

Take the opportunity to connect and build partnerships with school staff, volunteers, and other parents. Here are some ideas on how to form those relationships:

  • Talk with your child’s teachers and other school staff about epilepsy and explain what happens when your child has a seizure.
  • Join and volunteer to help within parent-teacher organizations.
  • Volunteer to assist at school functions, class parties, etc.
  • Become familiar with the school policies and the school handbook.
  • Organize meetings with teachers, nursing staff, lunchroom staff, bus drivers, etc.

Sharing Information with Your Child’s School

Work with your school to make sure teachers and other school staff know what to do when a seizure occurs. It is important that every student with seizures has a Seizure Action Plan.

This plan should be provided to all administrative staff and teachers at the school. Many schools have a form for students with special health care needs, sometimes called the “Individual Health Plan,” which can used as the Seizure Action Plan.

What’s included in a Seizure Action Plan?

The seizure action plan should be reviewed and signed by your child’s doctor and should include the following information:

  • Detailed information about your child’s epilepsy.
  • What to do if your child has a seizure at school or on the bus.
  • A list of anti-seizure medications that your child currently is taking, including how and when the medications are given, and any side effects.
  • Special instructions for the use of rescue medications, used in the case of an emergency, should also be included. If your child has a vagus nerve stimulator (VNS), then instructions on how to use the VNS magnet should also be included.
  • A clear definition of what constitutes an emergency for your child, and what the school should do if one occurs.

Epilepsy and Learning Disabilities

Plenty of children with epilepsy are straight-A students. If your child is having problems in school, talk to your doctor about possible reasons.

  • Sometimes, learning disabilities are directly related to the epilepsy. Whatever is causing seizures in the brain may also affect your child’s ability to learn.
  • Also, epilepsy medicines might cause side effects that can impair a child’s ability to concentrate.
  • Your child could have an unrelated learning disability, like any other child.
  • Lastly, depression may be a serious and unrecognized issue for children with epilepsy. Kids with depression may have low energy, a limited attention span, and bad grades. Parents should not assume these symptoms are normal for children with epilepsy.

Be on the lookout for learning problems or challenging behaviors in your child. Know that you can seek help from the school counselor or request a psychoeducational evaluation from the school psychologist if you feel your child is not performing well.

Fighting Epilepsy Stigma in Your Child’s School

Coping with people at school who don’t understand epilepsy is just one example of the stigma that you and your child may face at times. It’s important to fight these misunderstandings and prejudices when you encounter them. Explain that children with epilepsy are usually just as capable as other kids. You may meet people who call your child an “epileptic.” Explain why the term isn’t used anymore: A child with epilepsy isn’t defined by this condition. Instead, epilepsy is usually a small part of his or her life.

No doubt you and your child will meet some people with outdated ideas about epilepsy.

Educating Your Child’s Classmates

It can be frightening for students to witness a seizure. Educating your child’s classmates early on about proper seizure first aid and epilepsy can reduce stigma, decrease fear, and improve the overall acceptance of your child. Start by having a conversation with your child about his or her seizures. Explore when, where, and how to tell others about his or her epilepsy. Every situation and every child will be different, so doing some role playing and discussing how people might react can be helpful. Here are some suggestions about how to inform others:

  • Consider reaching out to school staff to explore educating your child’s classmates. Keep your child involved in the education process, too. There are many educational programs and tools available to help teachers create a basic epilepsy program.
  • Be a special guest/presenter for the day. Use the curriculum available here​.
  • Visit the Epilepsy Foundation’s Public Awareness page for information and ideas on talking about epilepsy, as well as a curriculum for training middle school and high school students.