Coming to terms with your child’s epilepsy

It’s natural to feel anxious when you are first told that your child has epilepsy. You may worry about how their epilepsy will affect them, and be concerned about side-effects from their epilepsy medicines. You may worry that family, friends, and neighbours will not know much about epilepsy, or how to deal with it. Finding out as much as possible about your child’s epilepsy and treatment, and sharing that information with other people, could be helpful. Once they understand, they are more likely to offer you support.

Talking about your concerns

Your family doctor can give you information and advice, but may not have time for long discussions. It could be useful to ask whether there is a children’s epilepsy specialist nurse attached to the epilepsy clinic. These nurses have a lot of experience of childhood epilepsy, and can offer you advice and support. Contact Epilepsy Action for information about your nearest children’s epilepsy specialist nurse.

Another source of support is forum4e, Epilepsy Action’s online community for people with epilepsy and their carers. You have to be 16 or over to join this forum. It’s a great way to talk to other people who may be going through similar things to you.

Epilepsy Action also has a number of support groups around England, Wales and Northern Ireland.