We exist to improve the lives
of everyone affected by epilepsy

Syndromes

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 experience difficulties with learning.

If a child is diagnosed with a particular syndrome, it allows doctors to provide more information about what is most likely to happen to them in future years, not only from the point of view of the epilepsy but also in relation to other features such as learning skills.

In the UK there are support groups for parents of children with some types of syndrome. Details of the support groups can be obtained from the following

Contact a Family
209-211 City Road
London EC1V 1JN
Freephone helpline: +44 (0)808 808 3555
Email: info@cafamily.org.uk
www.cafamily.org.uk

Because this page is written by an epilepsy healthcare professional and not by Epilepsy Action, it falls outside the requirements of the Information Standard.

Epilepsy Action has a website for children with epilepsy

Our thanks

Epilepsy Action would like to thank

  • Dr Richard Appleton, and Dr Rachel Kneen, consultant paediatric neurologists at Alder Hey Children’s Hospital, Liverpool, UK and
  • Dr Stewart Macleod, consultant paediatric neurologist at Royal Hospital for Sick Children, Glasgow, UK.
    They have kindly prepared the information on this page. It is based on their own research, experience and expertise.

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

Comments: read the 6 comments or add yours

Comments

Can Febrile Infection Related Epilepsy Syndrome (FIRES) be added to your list?

Submitted by Paula Spibey on

Hi Paula

Thanks for this suggestion. Our syndrome information is written by a neurologist, so we will certainly suggest this to him.

Cherry

Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

Hello,
I'd like to learn more about Epilepsy in Tuberous Sclerosis, so would like to see this on the list too please.

Submitted by Lottie on

Hi Lottie
Thank you for your comment.

The syndromes on our website are epilepsy related syndromes. This means that the syndrome’s main specific signs and symptoms are seizures.  An epilepsy syndrome is normally diagnosed by the seizure type, the age when the seizures start and a specific pattern on an electroencephalogram (EEG).

With Tuberous sclerosis, this is a genetic condition that can lead to the person developing epilepsy. The Tuberous Sclerosis association has a helpful factsheet on epilepsy due to Tuberous Sclerosis.

As there are many medical conditions that could cause a person to develop epilepsy, for example tuberous sclerosis, encephalitis, stroke or tumors we write our information so it’s relevant for anyone with epilepsy. It’s relevant for people who have a known cause for their epilepsy and for those that don’t. You may wish to view our information on what is epilepsy.

I hope this has answered your comment. If we can be of any more help, please feel free to contact us again, either by email helpline@epilepsy.org.uk or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards
Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

Hello I have two disabled children both with cowdens sydrome pten.they don't have epilepsy at the mo thank god but many develop at a later date.i have cowdens and refractory epilepsy.but my youngest is sweating a lot during the night and out of it when he's woken up or been woken and sometimes hard to wake he's got feeding issues so does feed in the night and does sleep a lot.i have night time fits he as been sick a couple of times during sleep any advice. ? Or ideas?

Submitted by Rebecca marklew... on

Hi Rebecca

My only advice would be to see your doctor about it.

It may be time for him to be referred to a paediatric neurologist to check out your concerns.

I hope you’re able to get some answers soon.

Regards

Cherry  

Epilepsy Action Helpline Team

 

Submitted by todd on