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Electrical status epilepticus during slow-wave sleep (ESESS)

This is a rare epilepsy syndrome. The most common age for it to develop is in mid-childhood. It is also called ‘continuous spike-wave of slow sleep’. The cause of this syndrome is not known. It usually happens in children who already have epilepsy.

Symptoms

The first sign of any problem is usually that the rate of a child’s learning appears to slow significantly. Many of the children begin to have problems with either the understanding of speech and language (this is called receptive dysphasia) or expressing their own thoughts (expressive dysphasia) in the form of spoken language.

Epilepsy develops and different kinds of seizures can happen either during the day or during sleep. Many children will have absence (blank) seizures, some myoclonic (jerk) seizures and others will have focal (partial) motor seizures (seizures involving jerks of one side of the body only) particularly during the night. Some children will not have any seizures during the night.

However, despite the fact that sleep patterns are often severely disturbed due to the seizures, children with ESESS usually wake the next morning feeling quite refreshed.

Diagnosis

The EEG shows continuous spike and wave epileptic activity during sleep, especially during part of sleep called ‘slow wave’ sleep. The EEG is often abnormal when the child is awake but in some cases, it may be normal. It is the EEG finding that gives the syndrome its name.

Metabolic (blood) tests, which look at the way the body works, and brain scans usually give normal results.

Treatment

If seizures are a problem to the child, then epilepsy medicines may be suggested to control the seizures. These include sodium valproate (Epilim), ethosuximide (Zarontin) and clobazam (Frisium).

Sometimes prednisolone (a steroid medicine) may be effective in treating ESESS but this medicine needs careful monitoring. There is another medicine called sulthiame (Ospolot) which may also be helpful. Only a specialist in paediatric epilepsy can prescribe these medicines.

For some children their ESESS does not respond to any medicines.

If your child has this syndrome they may have prolonged or repeated seizures. Your child’s doctor will discuss a ‘rescue’ or emergency care plan with you to treat any prolonged or repeated seizures.

There may be research studies open that are relevant to this epilepsy syndrome. Your child’s doctor will be able to discuss this with you.

Information about treatments for children can be found on the Medicines for Children website.

Outlook

For most young people an improvement is seen in the condition in the early teenage years. The EEG may return to normal and seizures become less frequent or stop altogether. At about this time an improvement in speech and language skills and learning is also seen. For some children, their ESESS may persist throughout childhood and into adult life.

Support

Contact
Helpline: 0808 808 3555
Website: cafamily.org.uk
Email: info@cafamily.org.uk

What is a syndrome?

A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. In epilepsy, examples of these signs and symptoms would be things like the age at which seizures begin, the type of seizures, whether the child is male or female and whether they have physical or learning disabilities, or both. The results of an EEG are also used to help identify epilepsy syndromes.

If you would like to know more about an epilepsy syndrome, please speak to your doctor. If you would like to know more about epilepsy in general, please contact Epilepsy Action.

Code: 
S024.03

Epilepsy Action would like to thank Drs Richard Appleton and Rachel Kneen (at Alder Hey Children’s Hospital, Liverpool) and Stewart Macleod (at Yorkhill Children’s Hospital, Glasgow), consultants who specialise in children’s epilepsy, who have updated this fact sheet.

 

This information is exempt under the terms of The Information Standard.

  • Updated June 2016
    To be reviewed June 2019

Comments: read the 4 comments or add yours

Comments

Hello I have an 11 year old boy who has been diagnosed with benign rolandic epilepsy. the problem that we are having is that his speech is that of a 5 or 6 year old, he has a very hard time talking or specifying himself and the people he is talking to have an even harder time understanding him, He has a very hard time reading to, the school he goes to is not helping, his doctor says it might get better but they contribute it to the seizure disorder that he has. Now that I am reading this article I'm wondering if maybe this could be an issue.

Submitted by Robert Head on

Hi Robert

Thank you for your post.

It sounds like your son’s speech has become very troublesome. It is recognised that some children with Benign Rolandic epilepsy (BRE) will have difficulties with reading and language, and might need some support for these.

It’s not possible for us to say if your son has ESESS. Many epilepsy syndromes share some similarities but most syndromes have their own unique EEG pattern to help with diagnosis.  

If you have concerns about your son’s diagnosis you will need to talk to his epilepsy doctor.

Because of your son’s diagnosis of epilepsy, the school has to put things in place to support him. This is written in the Children and Families Act 2014. If you haven’t already, you may wish to view our information on education and epilepsy.

If we can be of any more help, please feel free to contact us directly. You can either email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards

Diane, Epilepsy Action Helpline Team

Submitted by Diane@Epilepsy ... on

HI, My son is 5 years old and has always had jerky movements in his sleep. He also has speech & language issues. Could this be ESES and how would we go about getting this checked out? Thanks.

Submitted by Nicola on

Hi Nicola

There could be a number of reasons why your child may have jerky movements and speech and delay issues.

In order to find out what’s happening for your child the best thing would be to get a referral to a paediatrician or a paediatric neurologist.

They will be able to do some tests to help identify why your son has these symptoms. 

Meanwhile you might find our general information about diagnosing epilepsy useful.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on