Epilepsy syndromes

This syndrome affects 15% of children with epilepsy and can start at any time between the ages of 3 and 13.

Children may have very few seizures and most become seizure-free by the age of 16. They may have focal preserved consciousness seizures, with observable manifestations (previously called focal motor aware seizures), which means they involve movement. They are often at night, and usually involve one side of the face and/or the muscles that involve speech and swallowing, causing gurgling or grunting noises, mouth movements, and dribbling. Speech can be temporarily affected and symptoms may develop into a tonic clonic seizure. ASMs may not be necessary, but can be helpful if seizures are more frequent, or are mostly tonic clonic.

This syndrome usually starts between the ages of 4 and 10 and can affect up to 18% of school age children with epilepsy. Absence seizures happen frequently (up to 100 times a day) and are very brief, lasting only a few seconds. Because of this, they often go unnoticed.

During a seizure a child will become unconscious. They may look blank or stare, their eyelids may flutter, and they may make repetitive movements. They may not respond to what is happening around them or be aware of what they are doing. 

Seizures respond well to anti-seizure medication. If a child is seizure-free for two years, medication is sometimes reduced gradually. Up to 90% of children with CAE will grow out of seizures by the time they are adults. Sometimes a child with CAE may also have other types of seizure.

Dravet syndrome is a rare and complex neurological condition that affects around one in every 15,000 babies born in the UK. Seizures usually begin in the first year of life, with additional characteristics emerging typically from the second year onwards. 

The seizures occur spontaneously and may often also be associated with a high temperature or a hot environment. 

This syndrome is often associated with difficult to treat seizures, intellectual and behavioural difficulties, and a range of other problems. Dravet syndrome is lifelong, though different aspects may emerge or change as time goes on.

See more information about our research into rare epilepsies and development of new treatment options.

This syndrome usually starts between the ages of 12 and 18. Many children have different types of seizure:

• myoclonic seizures (brief muscle jerks) in the upper body
• tonic clonic seizures

Some children may also experience occasional brief absence seizures.

Seizures often happen as, or shortly after, the child or young person wakes up. Medication can be successful in controlling seizures, and may be needed for life. 

Tiredness, stress, lack of sleep, and excess alcohol can trigger seizures. It is common for people with JME to have photosensitive epilepsy.

This syndrome often begins in the first year of life and can affect children:

• who have had a previous brain injury before the age of 6 months
• whose brain has not formed properly (brain malformation)
• who have genetic abnormalities

It is identified by brief spasms or jerks which happen in ‘clusters’. Spasms can affect the whole body or just the arms and legs. Each cluster can include between 10 – 100 individual spasms, which often happen when the child is waking up. ASMs and corticosteroids (medicines to reduce inflammation) are used to treat this syndrome, and medicines help to control spasms in about 7 out of 10 children. Many children develop problems with learning or behaviour. Some may go on to develop Lennox-Gastaut syndrome.

This syndrome usually begins between the ages of 3 and 5, but can start as late as adolescence. Children may have different types of seizure, most commonly tonic (where the muscles suddenly become stiff), atonic (where muscles relax), and atypical absences. Atypical absences are different from typical absences as they often last longer, and a child may be responsive and aware of their surroundings. 

Many children also develop learning difficulties and behaviour problems. This syndrome can be very difficult to treat with ASMs, and most children need a combination of different drugs. Some non-drug treatments such as the ketogenic diet and vagus nerve stimulation therapy (VNS) can also be helpful. Seizures often continue into adult life.