How to talk to children about epilepsy

Kids are always asking questions! It’s as if they have a thirst for information that can never be quenched.

And if the child you care for has epilepsy, there is a good chance they will ask lots of questions about their condition. Now, unless you are medically trained, you might not always know the answer to these questions. But there are a few things you can do to prepare.

Here are some simple tips on how to talk to children about epilepsy. 

Why is it important to talk to kids about epilepsy?

Talking to your children about their seizures is valuable for several reasons:

• Helps them understand why they're having seizures 
• Means they will understand why they need to take medication
• Can make them feel more confident about themselves
• They can feel more comfortable explaining their seizures to others
• Will mean they know how to stay safe
• Helps them understand why they may not be able to do certain activities

Related: Taking care of yourself when looking after a person with epilepsy

Tips on how to talk to children about epilepsy

We’ve put together some general tips on how to talk to children about epilepsy. You know your kid (and their condition) best, but the following ideas can help with answering their questions.

Learn about epilepsy yourself

By taking the time to learn as much as you can about seizures and what causes epilepsy in children, you will feel more comfortable answering your child’s questions too. Try to get as much information as you can about epilepsy in general, what causes your child’s seizures and the syndrome they have. In the first instance, ask your child’s treatment team for information. 

Use age-appropriate language

There is no point in telling a 3 year old about neurons and synapses in their brain. Many adults don't understand what these terms mean! Instead, find ways to describe seizures and epilepsy using language they can understand.

It might also be useful to utilize children’s epilepsy books for inspiration. A great list of children’s epilepsy books can be found here.

How to talk to children about safety with epilepsy

It is helpful for children to understand some of the safety issues associated with epilepsy. The most important thing is to provide honest and age-appropriate explanations of why your child needs to do things like take medication, or why they may not be allowed to do certain activities.

Related: The link between autism and epilepsy

Be honest but fact-based

If you care for a child with epilepsy, they are likely to have questions about the dangers associated with their seizures. It is true that there are certain risks that come with epilepsy, including status epilepticus or SUDEP (Sudden Unexpected Death in Epilepsy).

Children can often tell if a parent is being dishonest, so it’s usually best to be truthful about possible health risks. That said, it’s also important to contextualize conversations about potential dangers. Many people with epilepsy live long, healthy and normal lives. Indeed, the risk of death from epilepsy (1.16 per 1,000) is lower than the risk of death from a heart disease (1.6 per 1,000) or cancer (1.5 per 1,000),

Talking to children about depression and epilepsy

Research shows that children with epilepsy have a higher tendency to experience feelings of depression than others. Try to keep communicating with your child so they know they can come to you if they are feeling low. Being an active listener – and avoiding the temptation to jump in with solutions – can also be very helpful.

What if you don't know the answer?

It is totally OK to not have the answer to every question! If you can’t answer a question, tell your child you don’t know but will find out and come back to them. Often, you can find answers on trusted websites such as the Epilepsy Foundation or the Epsy blog. If the question is specific to your child’s condition or the medication, speak with their doctor.

Talking to children about epilepsy

Every child is different but knowing how to talk to children about seizures will mean you’re better prepared for the different questions they might ask. By helping them understand more about their seizures, you’ll be giving the child you care for the support and information they need to live their life to the full. 

To learn more, read our 5 tips for caring for a child with epilepsy.