Being a parent, carer or guardian of a child with epilepsy can be distressing. The biggest challenge you will face is the fear of the unknown, so having some knowledge and information about the condition will help you to feel more confident.
This guide has been written by experts from Young Epilepsy, Great Ormond Street Hospital and University College London Institute of Child Health.
It would also not have been possible without the help of a great many parents who have told us what they would have liked to have known, when their child was first diagnosed.
This guide has been rated 'Highly Commended' by the British Medical Association (BMA) at their Patient Information Awards 2017.
A reviewer, on behalf of the judging panel for the Awards, said:
I think this is a very good resource. It is well-produced, attractive, and easy-to-read and contains a lot of detailed but relevant information. It provides an excellent summary of the key science behind the condition, its diagnosis and management. I think families with children with epilepsy would find this more informative than several more broad guides and resources out there.
Useful forms and documents
Here you can find some useful documents that will help to support your child in school as well as keep track of any seizures.
Epilepsy is the most common neurological disorder in childhood. It affects an estimated one in two hundred children but is widely misunderstood and misdiagnosed. It is known that children with epilepsy have learning and behavioural difficulties, but the severity and extent of the problems are unknown and the challenges children face are often missed because of the pressing medical needs of the condition. Crucially the impact of their learning and behavioural difficulties on their academic progress and quality of life in school often remains hidden.
Treatments and equipment
There are a number of different treatments for epilepsy, however the most common is medication.
Understanding the syndrome is key to knowing if seizures can be controlled; relevant medication and other associated difficulties around learning, behaviour or social functioning.