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Information for parents of children with epilepsy

These pages are about children with epilepsy in the UK. If you are looking for information about children with epilepsy in another country, please contact your local epilepsy organisation.

In the UK, around one in every 240 children under the age of 16 will be diagnosed with epilepsy. Some of them will be babies, and some will be teenagers, with many others in between.

If you are caring for a child with epilepsy, the information in this section is for you.

Visit our section for young people.

Code: 
B002.06

Epilepsy Action would like to thank Dr Amanda Freeman, consultant paediatrician at Queen Alexandra Hospital, Portsmouth, UK for her contribution to this information.

Dr Amanda Freeman has no conflict of interest to declare.

This information has been produced under the terms of Epilepsy Action's information quality standards.

  • Updated October 2019
    To be reviewed October 2022

Comments: read the 5 comments or add yours

Comments

A very useful page and lots of links for both children and parents. Many years' ago when we were children the information was not available! This is a great change for parents.

Submitted by Lesley Donnelly on

Good morning. I need help, information and assistance, it is regarding my daughter, she is 9 and has been diagnosed with Silent Seizures, she is on Epilim 200mg & she is on 3ml morning and afternoon. she has been really ill due to the side effects. Having an EEG done for her will it help? As her mom I am concerned about school and her everyday life. Please advise. Thank you

Submitted by Delene Govender on

Hi Delene

An EEG will help confirm a diagnosis. It may also show if your daughter’s symptoms could be related to seizure activity.

It may be possible to ease the side-effects.  This will depend on how long your daughter has been on the Epilim and how she has been increasing the dose. Sometimes a doctor may suggest increasing the dose of a medicine more slowly if they think someone’s side-effects are too severe.

If the doctor decides that Epilim is definitely not the right epilepsy medicine for your daughter then they are likely to suggest one of the other 20 or so epilepsy medicines. It is worth noting that, in Europe Epilim is no longer prescribed for girls and women of child bearing age because of the risks to the unborn baby.

I am not sure which country you’re in. If it’s America then you might find the American epilepsy organisation useful to contact. Meanwhile here are some other things that may help:

·         information about children with epilepsy

·         information for children with epilepsy

·         education

I hope this is useful for you.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

My three year old grandson has been diagnosed with epilepsy.
I am worried about what to do if he has a seizure when looking after him. What sort of first aid should I give him.
He becomes unconscious and sometimes doesnt jerk,
I guess I call an ambulance, but what to do in the meantime,

Submitted by Vivien on

Hi Vivien

You must be concerned for your young grandson and what you should do if he has a seizure. We have some first aid information here that explains how to help someone who is having a seizure:

https://www.epilepsy.org.uk/info/firstaid/what-to-do

We also have a video short online learning module called “What to do when someone has a seizure” here:

https://learn.epilepsy.org.uk/what-to-do-when-someone-has-a-seizure/

If you would like some copies of our first aid information or if it would help to talk through what to do please get in touch with the Helpline:

https://www.epilepsy.org.uk/info/support/helpline

Regards

Mags

Epilepsy Action Helpline Team

Submitted by Mags-Epilepsy Action on

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