What is it and how can you get help

Epilepsy can affect anyone at any age and at any time. It’s a neurological medical condition that means an adult or a little one has tendencies to have seizures.

The condition can be present at birth or come on later on in life. However, in around six out of 10 people affected, doctors don’t know the cause.

What are epileptic seizures?

A seizure happens when there is a sudden burst of intense electrical activity in the brain.  

It causes a temporary disruption to the way the brain normally works, so the brain’s messages become mixed up. However, because our brains are responsible for all our functions, what happens depends where the seizure begins in the brain, and how widely it spreads.

There are more than 40 different types of seizure, so what happens to you or your child during a seizure might be different to that of another.

You can find out more, watch short videos describing many different seizures and how to help, on Epilepsy Action’s website.  

Could my little one have epilepsy?

Some children have seizures due to illness and/or a high temperature.

If you’re unsure about what to do, call an ambulance. Also make sure you speak to your doctor as soon as possible.

If they think your child may have epilepsy, they will usually arrange for them to see an epilepsy specialist who will run tests and try to find a diagnosis.

How is epilepsy diagnosed?

There isn’t a single test to diagnose epilepsy. So, an epilepsy specialist will make a diagnosis based mainly on symptoms. You can help by taking a detailed diary of you or your child’s seizures to appointments, with dates, times and a description of what happened. Taking some video clips of your child’s seizures, if possible, may also help give doctors an idea of the severity.

There are lots of tests that can help diagnose epilepsy from EEG (electroencephalogram) tests and CT (computerised tomography) or MRI (magnetic resonance imaging) scans.

Blood tests can also be used to find out if seizures are not caused by epilepsy, but another medical condition, such as diabetes.

Will my child ‘grow out’ of their epilepsy?

Epilepsy is not necessarily a life-long diagnosis.  Many people who develop epilepsy below the age of 20 will ‘grow out of it' in adult life. Some types of epilepsy typically occur only in childhood.

Doctors may consider that your child no longer has epilepsy if they go without seizures for a long enough time, without medication.

Can epilepsy be treated?

Around 70 per cent of children and adults with epilepsy could be seizure free with the right epilepsy treatment. However, finding the right treatment at the right dose can be difficult and can take time.

Is epilepsy dangerous?

Children with epilepsy are at risk of seizure related injuries. For example if they dropped or fell onto a hot radiator during a seizure, or had a seizure while alone in the bath. So it is important to think about ways to try and keep your child safe should they have a seizure.  You could consider how many seizures your child has, whether they have a warning or aura before a seizure and what happens during a seizure when making your safety plan.

Most seizures are brief to a few minutes long, and end on their own without the need for medical help. Your child might feel tired, sleepy or confused after a seizure.

When to ring an ambulance

Ring an ambulance if your child has been severely injured during a seizure. Or, is having a seizure that is continuing after five minutes or after two minutes longer than normal, or, they have a cluster of shorter seizures with little or no recovery in between.  This seizure – or seizures – might stop on their own. But they might be a possible sign that your child is having status epilepticus, which is a medical emergency. 

Status epilepticus is a seizure that lasts 30 minutes or more. Any type of seizure can become status epilepticus. It is a medical emergency because the longer a seizure lasts, the less likely it is to stop on its own. It’s also less likely to stop with emergency medicines. Status epilepticus can lead to brain damage, or even death.

Every year, around 40 to 80 children in the UK die because of their epilepsy. For example, a child could have a seizure in a dangerous place. Or the seizure itself may be the cause of death. But the reasons for these deaths are not always known. Where a child with epilepsy has died suddenly, and no reason can be found, it is called sudden unexpected death in epilepsy (SUDEP).

Knowing about the risks means you can do things to keep the risks to a minimum. It’s a good idea to talk to your child’s doctor or epilepsy nurse about this. Epilepsy Action has more information about safety and SUDEP.

For more information and support, contact the Epilepsy Foundation (USA) or Epilepsy Action (UK).