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

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This resource is freely available as part of Epilepsy Action’s commitment to improving life for all those affected by epilepsy.

On average it costs £414 to produce an advice and information page – if you have valued using this resource, please text FUTURE to 70500 to donate £3 towards the cost of our future work. Terms and conditions. Thank you

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.

  • Updated March 2013
    To be reviewed March 2015

Comments: read the 3 comments or add yours

Comments

Hi - I've visited your site and found it very interesting and highly informative. My daughter has Dravet Syndrome a rare and catastrophic form of epilepsy. You can read more about it here: https://dravet.org/ Our aim is to promote early diagnosis by raising awareness of this syndrome to both professionals and organisations like yourself. We would be delighted if you were to feature something on your site about Dravet Syndrome. Kind regards Angie Lay

Submitted by Angie Lay on

My daughter who is now 19 has a rare genetic condition called IDIC15 (Dup 15q) she has always had seizures. Over the years the type have increased. She has a VNS implant and takes sodium valproate and Zonegran. Last September she was weaned off clobazam as this made her very sleepy and her quality of life was terrible. Since then her tonic clonics have been more active. (she hadn't had a tonic clonic for two years even though her other seizures happened on a daily basis) The timings went from a six week gap to four weeks to three, then to two, 10 days and now 7 days. The gap is closing and I am getting really concerned. I have informed her specialist epilepsy nurse, who has then let her neurologist know but there just doesn't seem to be any urgency with them.
With IDIC15 (Dup15q) there is a worry of SUDEP.....again the neurology team don't seem to be alarmed. I really don't know what to do.
can you advise?

Submitted by Pamela on

Hi Pamela

I can imagine what a worrying situation this is for you, and you feel that there seems to be no urgency with the neurology team.

It would be a good idea to talk to your GP  (family doctor) and ask if they could contact the neurologist for some advice about what can be done to help your daughter. They may also be able to arrange for your daughter to be seen sooner.

You may also find it helpful to contact the organisation Contact a Family, who may be able to put you in contact with other families who are living with the same condition.

I hope that you get some more help and support for your daughter soon.

Best wishes

Amanda

Advice and Information Team

Submitted by amanda on

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