This information is for people affected by or concerned about juvenile absence epilepsy, including parents and carers.
On this page we talk about how juvenile absence epilepsy is diagnosed, what causes it, symptoms, treatment options and long-term outlook.
Use this page as a general guide and speak to a health professional for more information and support.
On this page
What is juvenile absence epilepsy?
Juvenile absence epilepsy is a type of epilepsy that usually starts in children and young people between the ages of eight and 20 years of age. It is more common in girls than boys. The main seizure type in people who have juvenile absence epilepsy is absence seizures, which cause a brief loss of awareness.
Juvenile absence epilepsy is part of a group of similar epilepsy syndromes called ‘idiopathic generalised epilepsies’ – ‘idiopathic’ means the cause is unknown and ‘generalised’ means the seizure affects both sides of the brain. Other syndromes in this group include:
- Childhood absence epilepsy
- Juvenile myoclonic epilepsy
- Epilepsy with generalised tonic-clonic seizures alone
All of these types of epilepsy have a strong genetic link. This means that families of people with juvenile absence epilepsy are also likely to have had one of these syndromes.
Juvenile absence epilepsy is less common than childhood absence epilepsy. However, some children may go on to develop juvenile absence epilepsy after being diagnosed with childhood absence epilepsy first. Other children may have had seizures previously which were caused by a high temperature (febrile seizures).
Children who get this type of syndrome do not usually have any development or learning problems before the seizures start.
What causes juvenile absence epilepsy?
It is not completely understood what causes juvenile absence epilepsy. More research is needed to know exactly why it happens in some people. However, genetic changes (mutations) in one of several genes are thought to cause or increase the chances of a person getting this type of epilepsy.
What are the different types of seizures?
There are two types of seizures that people with juvenile absence seizures usually have. These include:
- Absence seizures – which affect everyone with juvenile absence epilepsy.
- Generalised tonic-clonic seizures – which affects nine out of ten children with juvenile absence epilepsy.
Find out more about the symptoms of absence seizures and generalised tonic-clonic seizures.
If a child is unwell or tired, they’re more likely to have an absence seizure.
Around one in five children with juvenile absence epilepsy may develop serious episodes called ‘absence status epilepticus’. This is an emergency situation which happens when a child has much longer absence seizures that last over 30 minutes. In rare cases, they can last hours or even days. Find out more about status epilepticus and emergency medication.
How is juvenile absence epilepsy diagnosed?
If you think either yourself, or a child has epilepsy, including juvenile absence epilepsy, contact a doctor. Children and young people may be referred to a paediatrician (a doctor who specialises in child health). Adults may be referred to a doctor who specialises in diagnosing and treating epilepsy.
Juvenile absence epilepsy is usually diagnosed using a combination of:
- Your child’s medical history and talking about their symptoms.
- An EEG (electroencephalogram) test – a painless test that uses small sensors attached to the scalp to pick up the electrical signals produced by the brain. An EEG test will show spikes, mainly in the occipital lobe of the brain (the part involved in processing visual information). During the EEG test, your child may also be asked to hyperventilate (breathe rapidly), or the doctors may use photic stimulation (rapid flashing lights).
- Sometimes, though not often, your child may also have a magnetic resonance imaging (MRI) scan – a scan that uses magnetic fields and radio waves to produce images from inside the body.
Find out more about preparing for consultations and appointments and keeping accurate seizure records.
Treatment for juvenile absence epilepsy
For certain people with juvenile absence epilepsy, their doctor may suggest trying sodium valproate (also known as Epilim) as a first treatment option. People who may be offered sodium valproate include:
- boys and men
- girls aged under 10 years and who are unlikely to need treatment when they are old enough to have children
- women who are unable to have children.
However, sodium valproate is not suitable for everyone. Read more about the process for prescribing sodium valproate below.
If sodium valproate does not work, one of the following treatment options can be tried on its own:
- Lamotrigine (also known as Lamictal) – a medicine that comes as a tablet, that you swallow.
- Levetiracetam (also known as Keppra) – a medicine that comes as a tablet, liquid or granules, that you swallow or mix with water.
If one of these treatments does not work, and the diagnosis of epilepsy remains, then the other treatment may be tried. Lamotrigine can occasionally make myoclonic seizures worse. If this happens, your doctor may try the other treatment instead.
If neither of these treatments work, then the following anti-seizure medications may be tried on their own or as an add-on medication:
- Perampanel (also known as Fycompa) – a medicine that comes as a tablet, that you swallow.
- Topiramate (also known as Topamax) – a medicine that comes as a tablet or capsule, that you swallow.
If absence seizures cannot be controlled, ethosuximide (also known as Zarontin) may be offered in combination with other drugs. However, ethosuximide does not work well at controlling generalised tonic-clonic seizures.
Talk to your doctor about switching to a new treatment or adding a new treatment to your current routine. They will explain the reasons for changing treatments, the risks and benefits of each, and any possible treatment side effects.
Sodium valproate
In January 2024, new rules were introduced for prescribing sodium valproate.
Two specialists are now needed to approve:
- New or ongoing valproate treatments for girls and women.
- New valproate treatments for boys and men
The specialists must agree that your epilepsy does not respond to other treatments and the benefits of treatment outweigh the risks.
For girls and women, valproate can seriously harm an unborn baby when taken during pregnancy.
For boys and men, valproate may cause infertility. Some people’s fertility may return when their treatment is stopped or reduced. There is also some evidence that valproate can cause harm in the testicles of animals, but it’s unclear what this means for humans.
Never stop taking valproate before talking to your specialist first. Not taking medication as prescribed can increase the risk of a seizure.
Your epilepsy specialist will let you know when your treatment is due to be reviewed.
If you are planning a pregnancy it is important to speak to your healthcare professional as soon as possible about your treatment options.
If you have any questions or concerns about valproate, please speak to your healthcare professional.
Find out more about sodium valproate in the MHRA’s patient guide.
Find out more about Anti-seizure medications, contraception and pregnancy.
What’s the long-term outlook for people with juvenile absence epilepsy?
Juvenile absence epilepsy is a lifelong condition, but with the right treatment and support about eight in ten people can usually control their seizures well. But if they stop taking their medications, the seizures will return.
Around one in five children diagnosed with juvenile absence epilepsy will go on to develop juvenile myoclonic epilepsy. This means they may start having frequent myoclonic seizures. These are sudden, brief jerks that affect their arms, legs or whole body. If a child goes on to have juvenile myoclonic epilepsy, they may be more likely to have photosensitivity (seizures triggered by flickering or flashing lights).
Children with juvenile absence epilepsy do not usually experience behavioural or learning difficulties but some may experience memory, concentration and language difficulties. Find out more about how epilepsy can affect learning and behaviour.
Living with juvenile absence epilepsy and getting support
Having a child with any form of epilepsy can be challenging and upsetting. Talk to the child’s doctor for help on how to support them well. And talk to your own doctor if you need support for yourself. If you’re caring for someone with juvenile absence seizures, it’s important that you look after yourself and get the support you need.
You may find it helpful joining an in-person or online support group, where you can listen to or share experiences with other people who understand what you’re going through.