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.
What is epilepsy?
Epilepsy is a condition that affects the brain, causing seizures. If your child has been diagnosed with epilepsy it means they’ve had at least one seizure and are likely to have more.
Electrical activity is happening in the brain all the time, but a seizure happens when there’s a sudden, intense burst of this electrical activity. This briefly disrupts the way the brain normally works, so the brain’s messages become mixed-up.
There are many different types of seizure, each with its own name and set of symptoms. They are often put into two groups according to where in the brain they start. Focal seizures start in one side of the brain, while generalised seizures affect both sides of the brain from the start.
Some types of seizure that can affect children are:
• Focal aware seizures
• Focal impaired awareness seizures
• Absence seizures
• Tonic-clonic seizures
• Myoclonic seizures
Some children only have one type of seizure. And some children have more than one type.
It’s important to find out the right name for your child’s seizures, so that you can explain their epilepsy to people who might look after them. If you’re not sure what your child’s seizures are called, ask their doctor or epilepsy nurse.
Some children have an epilepsy syndrome. A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. In epilepsy, examples of these signs and symptoms would be things like the age at which seizures begin, the type of seizures, whether the child is male or female and whether they experience difficulties with learning.
Common epilepsy syndromes that affect children include childhood absence epilepsy, juvenile myoclonic epilepsy, and childhood epilepsy with centro-temporal spikes. But there are many others. If your child has a particular epilepsy syndrome, their doctor should give you the name and more information about it.
Most children with epilepsy can still do the things they enjoy, including playing sport, taking part in school activities and spending time with friends. But if your child’s seizures are not fully controlled they might need some extra safety measures to protect them from harm.
The safety measures your child needs will vary depending on the type of seizures they have, and when they usually have them. Some examples of safety measures for a child who has tonic-clonic seizures during the day include:
- When swimming, have someone in the water with them who knows what to do if they have a seizure
- When cycling, make sure they wear a helmet and keep to paths away from water and busy roads
- On school trips, make sure staff know what to do if a seizure happens
If you’re not sure if an activity is safe for your child it’s a good idea to ask their doctor or epilepsy nurse for advice. Epilepsy Action also has safety advice for both inside and outside the home, and information about sports and leisure activities.
Telling other people about your 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.
Having epilepsy comes with certain risks. One small but important risk to know about is sudden unexpected death in epilepsy (SUDEP). This is when someone with epilepsy dies unexpectedly, and there is no clear reason why.
SUDEP is rare in adults, and even rarer in children. It’s estimated that each year, for every 4,500 children aged 17 and under with epilepsy, one will die from SUDEP. However your child’s individual level of risk will depend on a number of factors, including how often they have seizures, the type of seizures they have and whether they have other health conditions. It’s worth talking to your child’s doctor or epilepsy nurse about any risks for your child and what steps you can take to reduce the risk.
Some parents choose to use a monitoring device to alert them if their child has a seizure. Monitoring devices range from simple baby monitors that monitor sound, to specialist equipment designed to pick up the movements of a seizure or changes in heart rate. If you’re thinking about buying a monitor it’s a good idea to discuss it with your child’s doctor or epilepsy nurse. They can let you know if the monitor you’re considering is likely to detect your child’s type of seizures.
Some families can get a seizure monitor provided by their local authority, and some charities offer free monitors for children who meet their criteria. Find out more about seizure monitors and possible sources of funding.
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 Epilepsy Action's information quality standards.
- Updated October 2019To be reviewed October 2022