What is ESES epilepsy? Your introduction

  • June 14, 2023
  • 4
In this article
A child with ESES epilepsy and her teddy

Has your child’s learning suddenly slowed down? This is one of the telltale signs of electrical status epilepticus during slow-wave sleep, or ESES epilepsy. 

It can be a lot to take in when a doctor tells you they think your child has ESES epilepsy. In this article, you’ll find an introductory overview to learn more about the condition.

What is ESES epilepsy?

ESES epilepsy is an epilepsy that begins in childhood between the ages of three and ten, although it most often starts around four or five. It may last for a few months or a few years, but for most children, it clears up on its own by the time they reach their teens. 

ESES makes children have seizures during their sleep (a seizure is an unusual surge in electrical activity in the brain) which makes it harder for them to learn new information. 

It is a rare condition - less than 1% of kids with epilepsy have it. Unfortunately, because it’s so rare, there’s not been much research published about it. 

Sometimes, ESES epilepsy is referred to as ‘continuous spikes and waves during sleep’ (CSWS). These kinds of seizures might also affect children with specific epilepsy syndromes such as Landau–Kleffner syndrome. 

ESES epilepsy symptoms

There are several ESES epilepsy symptoms which suggest a child might be developing the condition:

  • Learning difficulties: The clearest sign of ESES epilepsy is when a child suddenly becomes much slower at learning new information, and they may also forget how to do things they had learned before. They might also struggle with understanding other people, and they may have difficulties expressing themselves with words. 
  • Behavioral problems: Some kids with ESES epilepsy may develop behavioral and attention problems. 
  • Daytime seizures: Some children with ESES epilepsy also have occasional epileptic seizures while awake during the day, including absence seizures (going ‘blank’) or myoclonic seizures (uncontrolled jerks). 

Even though ESES seizures disturb the child’s sleep, children with this kind of epilepsy usually wake up feeling refreshed and normal. Their nighttime seizures might not be visible either - they won’t necessarily move or jerk, so you can’t tell they’re having a seizure just by looking. 

Suggested: Can lack of sleep cause seizures?

Causes of ESES epilepsy

We still don’t fully understand ESES epilepsy, why it happens, or why it causes learning problems. 

Some research suggests that the seizures in ESES epilepsy may begin in a part of the brain called the thalamus. This is like a hub in your brain that processes information from your senses. Having repeated seizures here might make it harder for your child’s brain to process information - which might explain why children with ESES can have learning difficulties. 

About 10% of ESES epilepsy is believed to have a genetic cause, and about 45% may come from physical damage in the brain. But for almost half of kids with ESES, the cause is unknown. 

ESES epilepsy life expectancy

ESES epilepsy is not life threatening in itself, and there’s no evidence that people who have it live shorter lives than others. If it’s diagnosed and treated early, children may avoid permanent damage to their learning abilities. But if it takes more time to diagnose, it could cause lifelong mental and physical deficits. 

Diagnosing and treating ESES epilepsy

ESES epilepsy can usually be diagnosed using an EEG machine while the child is sleeping. An EEG uses sensors attached to the child’s head which can record brain activity. Kids with ESES have very specific kinds of brainwaves, which epilepsy specialists use to diagnose the condition. 

The most common treatment for ESES epilepsy is medication. Doctors use a range of treatments, including

  • Steroids
  • Sodium valproate
  • Ethosuximide
  • Levetiracetam
  • Sulthiame
  • Topiramate
  • Amantadine
  • Immunomodulatory agents

If medication doesn’t stop the seizures, medical teams might recommend the ketogenic diet - a high fat diet that can help treat epilepsy. Sometimes, brain surgery may be an option too. 

The importance of speed

It is really important to get ESES epilepsy diagnosed and treated as soon as possible. Treatments can reduce or even stop your child’s seizures, and mean they’re less likely to experience long term learning difficulties. 

Looking to learn more about caring for a child with ESES epilepsy? In 2018 Epilepsy Ontario, published a fascinating interview with a mother whose child was treated for ESES epilepsy - which provides a great insight into this condition and its treatment.

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