Find out more about syndromes
About epilepsy syndromes
Not everyone with epilepsy will be diagnosed with a syndrome. About half of babies and infants will be diagnosed with a syndrome, and about a third of older children. If you are diagnosed with one, it can help to understand your condition. It can also help with getting the right treatment and support.
Epilepsy syndromes can sometimes change over a person’s lifetime, and they may change from one type to another as you get older.
What does it mean to have an epilepsy syndrome?
If you or your child are diagnosed with an epilepsy syndrome, it can give you important information about your condition. It means doctors will have a better idea of the best way to treat the epilepsy.
It also gives information on how you might be affected. This includes how long your epilepsy is likely to last, and whether you will need extra support. This could be for related health conditions or development problems.
There may be research studies that you or your child can take part in for some epilepsy syndromes. Your paediatrician or paediatric neurologist may talk about this with you.
Diagnosing epilepsy syndromes
Doctors use information about a person’s epilepsy to decide if they have a certain syndrome.
Not everyone who has seizures will get a diagnosis of a syndrome. This could be because there’s not enough information to give a definite diagnosis, or because the symptoms don’t fit a particular syndrome. Instead, your doctor may just tell you the type of seizures you’re getting. Knowing your seizure or epilepsy type can still help doctors to work out the best treatments for you.
The information they use to diagnose an epilepsy syndrome can include:
- The type of seizures the person has
- The age when the seizures started
- The cause of their epilepsy
- EEG test results (these record brain activity), brain scans and sometimes genetic tests
- Whether the person has any other symptoms, like learning disabilities or problems with speech or movement
The tests doctors use, and signs they look for, depend on the type of syndrome they think someone may have. We have more information about diagnosis on each of our individual pages.
On our Just for Kids page, we have information to help your child understand their seizures.
Classifying epilepsy syndromes
Epilepsy syndromes can be described and categorised in different ways. The most common way to categorise them is the age at which they usually start. This follows a classification system developed by the International League Against Epilepsy (ILAE). The ILAE is a world-wide organisation of epilepsy professionals.
They can also be described depending on the type of seizures involved, and whether there are any development problems. For example, they may be described as:
- Generalised, focal or generalised and focal combined
- Self-limited, if affected children are likely to grow out of it over time
- Developmental and epileptic encephalopathy, if it’s associated with development or learning problems
What are the different epilepsy syndromes?
Here we list the epilepsy syndromes that we have more information on.
There are more syndromes that we don’t cover. See our section below on other sources of information.
Syndromes that start in babies and children under 2 years
- Dravet syndrome
- Early-infantile developmental and epileptic encephalopathy (EIDEE)
- Gelastic seizures with hypothalamic hamartoma (GS-HH)
- Genetic epilepsy with febrile seizures plus (GEFS+)
- Glucose transporter 1 deficiency syndrome (Glut1DS)
- Infantile epileptic spasms syndrome
- Myoclonic epilepsy in infancy
- Self-limited (familial) infantile epilepsy
- Self-limited (familial) neonatal epilepsy
- Sturge-Weber syndrome
- Syndromes that start in childhood (age 2 to 12 years)
- Syndromes that can start at any age
- Resources and websites for other syndromes
General sources of information
If you or your child have been diagnosed with an epilepsy syndrome, your epilepsy specialist or epilepsy specialist nurse will be able to give you more information about it.
There are many more epilepsy syndromes and causes of epilepsy than we are able to cover in detail on our website. There are also many conditions or syndromes that are not classed as epilepsy syndromes by the ILAE. Lots of these have epilepsy as one of their main symptoms.
If you can’t find information about a syndrome on our website, these websites might be helpful.
Rare Disease Database
This is run by the National Organization for Rare Disorders. The Rare Disease Database has information on rare epilepsy syndromes and genetic conditions.
UK-based charity for all types of brain inflammation (encephalitis). The Encephalitis Society cover various types of encephalitis. Some of these can be linked to epilepsy syndromes.
Your child and epilepsy
Grow your confidence managing epilepsy in your family.
The aim of the course is to provide parents and carers with the knowledge, skills and confidence they need to care for and support children with epilepsy.
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