Explaining Epilepsy to Friends and Family


Wendy Miller PhD, RN, talks about parenting while living with epilepsy. Visit TalkAboutIt.org to watch more celebrity and expert interviews.

As a parent of a child with epilepsy, you will probably need to explain many times and over many years what the condition is to not only your child, but to many other children — friends and relatives of all different ages.

When talking to children, try to keep your explanation as easy-to-understand and positive as possible. Encourage children to ask questions and be honest about their concerns or fears. If they say something that seems cruel or insensitive, try not to criticize them but explain why it is important to think of other's feelings.

For example, if a child said:

"Tommy is weird. Yesterday he fell down and started shaking all over."

You could say:

"I'm sure it was frightening for everyone. But it's important for all of us to think about how Tommy felt and to try to understand what happened. Tommy had a seizure. For just a couple of minutes, his brain was not able to control what he was doing. Your teacher knows how to make sure Tommy doesn't get too hurt when he has a seizure and what to do to make sure that he is OK after. There are two important things you can do to help Tommy.

  1. If Tommy ever has a seizure and your teacher or another adult isn't there, go get someone as quick as you can.
  2. Be nice to Tommy and help others understand about seizures. Tell them that just like some kids need glasses to see better and others sometimes have trouble breathing because of asthma, Tommy sometimes has seizures. His doctors are helping him find the right medicine so he doesn't have seizures too often. Seizures don't stop him from playing ball, going on swings, watching TV or doing anything else kids like to do."

For many children, stories with pictures are often the best way to learn. Here are some stories you can share. You might want to tell your child's teacher about them too.

  • My Friend Matty: A Story About Living with Epilepsy - A colorful picture book about the active, happy life of a third grade boy with epilepsy. It is available in English and Spanish.
  • Because You Are My Friend - A very simple, easy to understand story in which a boy tells his friends that he has epilepsy and that "I know you'll understand."
  • This book has a number of stories about how epilepsy affects different families. It's especially good to share with children who have epilepsy and their sisters and brothers. You can also print out some of the pages so children can color in the simple line drawings.
  • This fun, easy-to-understand coloring book teaches young children about epilepsy. Print out pages for your child for your child to color.
  • Visit the Epilepsy Foundation Store for other books and materials for children.

Most children with epilepsy lead full, active lives. Parents need to make sure that teachers, coaches, babysitters and others who are with their children when they are away from home understand what epilepsy is and what to do in case of a seizure.

Start by sending them this link to this website's What Everyone Should Know section or printing it for them. Following are some other links that you might want to direct them to:

Teenage years bring special challenges. For tips on helping your child through them, read the Adolescence and Entering Adulthood sections of this site. Encourage your teenager to visit the Epilepsy Foundation's Community Forum: Teen Group

In a national survey, just about half of all teens had even heard of epilepsy. Two-thirds said that they wouldn't know what to do if someone had a seizure. Work together with your child's school to educate your child's classmates about epilepsy.

A great read about how a high school student in Wisconsin and her school nurse teamed up to launch an epilepsy education program.

Lack of knowledge about epilepsy can lead to bullying or discrimination. If your child is facing such problems, visit the Helping Children Understand for suggestions.


Reviewed By:

Joseph I. Sirven MD and Patty Osborne Shafer RN, MN

on Wednesday, March 19, 2014


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