Have you noticed your child’s eyelids seem to flutter many times each day? This could be a sign they have Jeavons syndrome, a type of epilepsy which often comes with eyelid jerks called eyelid myoclonia.
Jeavons syndrome often goes undiagnosed for a long time because the seizures may be confused with facial tics. Epilepsy experts should be able to test for eyelid myoclonia and give you a diagnosis.
Read our introduction to Jeavons syndrome to learn the essentials.
What is Jeavons syndrome?
Jeavons syndrome is a type of epilepsy where the most obvious symptom is frequent eyelid flutters called eyelid myoclonia. People with Jeavons syndrome usually have these seizures many times each day. The seizures are usually very short (lasting less than six seconds). The seizures are often triggered by bright or flashing lights, or even just closing their eyes.
It usually begins in childhood, and is a lifelong condition. It tends to affect girls more than boys.
There are three main types of Jeavons syndrome:
- Eyelid myoclonia with or without absence seizures
- Eyelid myoclonia with generalized tonic clonic seizures
- Eyelid myoclonia and a mix of other seizure types
Jeavons syndrome is regarded as a rare condition (only around 1% of people with seizures are diagnosed with it according to the Epilepsy Foundation). Because it is often misdiagnosed, more people may have it than we currently realize.
What does Jeavons syndrome look like?
Some of the common symptoms of Jeavons syndrome include:
- Eyelid myoclonia: the person’s eyelids will jerk and their eyes will roll upwards. These seizures last just a few seconds and happen multiple times per day.
- Light sensitivity: people with Jeavons syndrome are very sensitive to any bright light – not only flashing lights. The seizures can also be triggered by simply closing their eyes.
- Loss of awareness: Some people lose awareness during eyelid myoclonia seizures.
- Tonic clonic seizures: Some people with Jeavons syndrome will occasionally have tonic clonic seizures - where they fall to the ground and shake uncontrollably.
- Status epilepticus: Some people with Jeavons syndrome will develop status epilepticus, which is when the seizures last for more than five minutes and don’t stop on their own. It may last for hours or even days and you will need to go to the emergency room
- Development: Most children with Jeavons syndrome don’t have intellectual problems.
Related: What is a myoclonic seizure?
Diagnosing Jeavons syndrome
If you believe your child may be having eyelid myoclonic seizures, then speak to an epilepsy specialist. The condition is often diagnosed using video EEG. This is when sensors are attached to your child’s head which can record very specific electrical patterns in their brainwaves. The use of video can also record your child’s seizures so the doctors have more information.
They will also take a medical history and will ask if anyone in your family has ever had epilepsy.
Why do people get eyelid myoclonia?
We don’t know exactly why this type of epilepsy happens, but research suggests it is related to certain genes.
How is Jeavons syndrome treated?
Jeavons syndrome is normally treated using anti-epileptic drugs (AEDs) and your child may need to take more than one type (polytherapy). Unfortunately, people with this condition often develop refractory epilepsy, which is when drugs don’t control the seizures, or they stop working after a while.
Alternative treatments include the ketogenic diet, which is a special diet which can reduce the number of seizures people have. Some people also find it useful to wear certain kinds of blue eye lenses which reduce light exposure. And it’s also helpful to avoid stress, tiredness and alcohol as these can trigger seizures too.
If you believe your child may be experiencing eyelid myoclonia, speak with their doctor to find out about diagnosis and treatment options.