Being a parent is never easy. Being a parent of a child with epilepsy is harder still because there is so much to think and worry about. Having to confront difficult issues and face difficult but important conversations is something no one would choose to do. However, please don’t feel you are alone, because there are people ready and willing to help. By arming yourself with information and understanding all about epilepsy risks, you will be taking positive steps to help your child live safer.

Approximately one person in 1,000 with epilepsy will die from SUDEP.  

Previously, it was thought that SUDEP in children was less common than in adults but current research now suggests previous numbers were underestimated and that the risk of SUDEP in children with epilepsy is broadly similar to that in adults (1.2 deaths per 1,000 children with epilepsy each year). 

Risk increases if a child has a more complex form of epilepsy, for example, Dravet Syndrome.

Developing independence as you get older is important but living with epilepsy can make it harder to feel like your peers, especially when starting new schools or going to university.

Moving from paediatric (children’s) to adult epilepsy services is an important transition that needs careful management as it coincides with so many other changes that may be happening in your life. 

Balancing these adjustments whilst taking on increased independence and more responsibility for making decisions / looking after yourself is not easy, but you’re not on your own. Living with epilepsy doesn’t mean you cannot lead a normal life. Having a long-term condition like epilepsy doesn’t mean you can’t take part in everyday activities; it just means taking a few extra steps along the way to ensure you stay as safe as possible. Having regular medical reviews, sticking to routines that work for you and keeping an eye on changes are all things that can help.