It is recommended that adults talk to children about epilepsy, whether the epilepsy is the child’s or the adult’s. This is best done in a calm, relaxed manner, as the child shouldn’t feel that the parent is upset, anxious or angry - with the epilepsy or with the child. This will set the ‘tone’ for the child that it’s okay to have epilepsy and it’s okay to talk about it. Talking to children about epilepsy helps them to be involved and can make things easier. Talking to an older child about triggers and lifestyle issues can educate the child and prepare them for managing their own epilepsy at a future stage. Using the right words when explaining epilepsy to a child can be very important as it is a complicated area and words like ‘epilepsy’ and ‘seizure’ are difficult for young children to pronounce and understand. Below are some examples that you can use when explaining to a child about epilepsy. See also our tips on discussing epilepsy with a teenager.
Q. What is epilepsy?
A. Epilepsy means that someone can have a seizure.
Q. What is a seizure?
A. A seizure is short. It happens in a person’s brain. In a seizure the person feels no pain. A seizure happens when your brain takes a little break.
Q. Are all seizures the same?
A. No. There are lots of types of seizures, but the one you need to know about is called … Tonic clonic/focal aware/focal impaired/absence/simple partial/myoclonic (Choose from these main types, and/or add in another type if necessary.)
Q. What does a tonic clonic seizure look like?
A. In a tonic clonic seizure a person can cry out, go stiff, fall down, shake their arms and legs and be unconscious. Being unconscious looks like a very deep sleep. They may be very tired after and need to sleep. They should feel better afterwards.
Q. What does a focal impaired (or complex partial) seizure look like?
A. In a complex partial seizure a person might wander around ‘on automatic’ but not know what’s happening. They may pull at their clothes or they may be confused and not be able to speak properly. (Add in other signs that might be seen.)
Q. What does an absence seizure look like?
A. In an absence seizure a person seems to go blank or stare ahead unaware for a few seconds only. They do not know that this is happening, and so won’t remember it afterwards.
Q. What does a focal aware (simple partial) seizure look like?
A. In a simple partial seizure a person may know what’s happening but not be able to control it. Signs could be twitching of the face, arm or leg or shaking of part of the body. Sometimes only the person themselves knows the seizure is happening like when they get a funny taste or smell or a tingling feeling
Q. What does a myoclonic seizure look like?
A. In a myoclonic seizure the person may make sudden jerking movements of their arms and body. These can be very short seizures and the person may be aware during them.
Q. What does a seizure look like? (Simpler explanation for a very young child.)
A. The person may stare, seem confused, or fall. The person may be sleepy but should feel better soon.
Q. What happens in the brain during a seizure?
A. It’s like the screen goes blank and then turns back on again. Or : A brain is like a computer. Sometimes it can shut down for a few seconds and then start up again, just like a computer does.
Q. Who has epilepsy?
A. Seizures can happen to anybody. Lots of people can have seizures: mums, dads, grandparents, brothers and sisters.
Q. Can I catch epilepsy?
A. No, you cannot catch epilepsy from anyone.
Q. Can it be cured?
A. The doctor can give a medicine to try to stop seizures