Hesperian Health Guides
Chapter 8: Talking with children about epilepsy and seizures
When children learn that medicine can prevent their seizures, it may make them feel more comfortable playing with their friends. And it may also help them remember to take their medicine every day.
Family, friends, health workers, and others who encourage open and honest talking about epilepsy create an environment that better supports children who have seizures. At school, teachers can provide a child with support they may need and teach other students what to do if a seizure happens. Community education can highlight the benefits of accepting all children as they are, instead of focusing on what children with epilepsy cannot do and the problems they face.
Children with epilepsy can learn that even though they may face challenges, there is nothing âwrongâ with them. Adults can help children accept themselves by explaining why stigma and bullying happen and taking a clear stand against it. This will help children with epilepsy develop confidence to stand up for themselves.
Why talk with a child about their epilepsy and seizures?
Safety. Understanding their epilepsy can help a child prevent injury to themself and others. If a child learns how to tell a seizure is about to happen, they can stay safe by sitting down, alerting someone nearby, or calling for help.
Less fear and worry. Children who know what to expect from their seizures and their recovery will feel less fear and worry and gain more confidence that they can handle their seizures. They will find reassurance and comfort when parents and others show concern and acceptance.
Taking daily medicine. Children who understand even a little about how medicine can control their seizures become more aware of its importance and more willing to take it every day. Helping children understand what medicine does, even if it tastes bad or makes them sleepy, can make it easier for them to feel good about taking it.
Reducing stigma. When people do not talk openly about epilepsy, fear of and discrimination against people with epilepsy can take root in the community and also inside the child. Adults talking with children about their epilepsy and children talking about their experiences with each other, caregivers, health workers, and community members, all contribute to fighting stigma. Parents and caregivers can support children to challenge stigma and misinformation by encouraging them to explore new experiences and enjoy life as fully as possible. For information about epilepsy stigma, see Chapter 5.
Reducing feelings of guilt. A child may wonder if they caused their own epilepsy. Or if someone in the family has epilepsy, a child may think it is because of something they did. By explaining that epilepsy is a brain condition that many people have, children can learn that epilepsy is not anyoneâs fault.
Building peer support through shared experience. As a child better understands their experience of living with epilepsy, they are better able to connect with other children who also live with the condition. By sharing stories and experiences, children support each other, building confidence and community.
Benefits of talking to all children about epilepsy and seizures
Because children thrive through playing, learning, and just being together, all children will benefit from understanding more about epilepsy. When a child has a seizure, children around them can prevent them from getting injured. When children understand what a seizure is, they will not feel afraid when they see someone having a seizure. The more children understand about epilepsy as a health condition, the less likely they are to bully or exclude a child who has seizures.
Talk with children of all ages
What a child will understand about epilepsy and seizures depends on their age. Parents and caregivers know and understand their children better than anyone else, including what words they may or may not understand, how they take in new information, and what questions they may ask. Your knowledge of and love for your children will help you talk with them about epilepsy.
No matter their age, talking with a child about living with epilepsy does not mean you must have all the answers or share everything you know. Young children who are just learning to use words need small bits of information rather than everything all at once. As children grow and change, they will want to know more, including why they have seizures. It is OK to say you do not know. Together you will learn how to talk openly and honestly about epilepsy, and together you will learn how to best manage their condition.