These pages are about children with epilepsy in the UK. If you are looking for information about children with epilepsy in another country, please contact your local epilepsy organisation.
My child has been diagnosed with epilepsy
This can be a confusing time. You might be shocked to hear that your child has a condition called epilepsy, or you might be relieved to be told that what has been happening now has a name. But what exactly does epilepsy mean? It means that a child has had at least one seizure and is at risk of having more. And although some children will have epilepsy for life, other children will grow out of it.
Who should I tell about my child’s epilepsy?
For your child’s safety, it’s important to tell anyone who will be caring for them about their epilepsy and seizures. Depending on their age, you might need to talk to their childminder, teacher, out of school activity leaders, and other members of your family.
When talking to other people, it’s important to be as honest and open as you can about what happens before, during, and after your child’s seizures. To help you with this, you could write up an epilepsy care plan with your child’s doctor or epilepsy nurse. Information in the care plan will tell people what they need to do to keep your child safe. It will also give information about the medicines they take, and who to contact in an emergency.
If your child's school want to know more about epilepsy, they could use our training for schools.
Getting the name right
It's important to find out the right name for your child's seizures or syndrome, so that you can explain their epilepsy to people who might look after them.
“My sister has epilepsy and we have to think about her before we can go anywhere. I know it's to keep her safe, but it's hard on me and my brother too.” Sam
If your child is still having seizures, they may be at risk of being injured during a seizure. This is more likely if they have learning disabilities or their epilepsy is part of another condition. Although it’s not possible to prevent all their injuries, there are safety precautions you could try, to keep your child as safe as possible.
What is SUDEP?
Every year, around 40-80 children in the UK die because of their epilepsy. Some children die because they have a seizure in a dangerous place. Or the seizure itself could have caused their death. But, for some children who die, no cause can be found. When a child with epilepsy dies suddenly, and no reason can be found, it is called sudden unexpected death in epilepsy (SUDEP).
If a child has epilepsy, they have a 1 in 4500 risk of SUDEP. This means that 1 child will die, but 4499 will not. Children who have 3 or more generalised tonic-clonic seizures a year are at the highest risk of SUDEP. This is particularly so if they happen in their sleep.
The good thing is that knowing about the risks means you can do things to keep these to a minimum. It’s worth talking to your child’s doctor or epilepsy nurse about any risks for your child.
Can people treat my child differently because of their epilepsy?
In the UK, there are equality laws that make it illegal to discriminate against people with epilepsy. The Equality Act protects children in England, Scotland and Wales. The Disability Discrimination Act (DDA) protects children in Northern Ireland.
The equality laws state that anyone who provides goods or services must make sure that children with epilepsy are treated fairly. And service providers may need to make reasonable adjustments so that your child is not disadvantaged because they have epilepsy. A reasonable adjustment would be their teacher providing written information for them if a seizure has caused them to miss part of a lesson.
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.
Epilepsy Action would like to thank Dr Amanda Freeman, consultant paediatrician at Queen Alexandra Hospital, Portsmouth, UK for her contribution to this information.
Dr Amanda Freeman has no conflict of interest to declare.
This information has been produced under the terms of The Information Standard.
- Updated September 2016To be reviewed September 2019