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Story for parents to explain their epilepsy

These two stories are for anyone with epilepsy who is a parent or cares for a young child.

When you decide to tell your children about your epilepsy is your decision. This story aims to help you with that conversation.

Children need to know what epilepsy is and that it’s nothing to be afraid of. They also need to know what they should do if you have a seizure.

Children can also get information about epilepsy from our children's website 'Just for kids'

Comments: read the 6 comments or add yours


I have recently split with my partner we have a one year old son. I've had one night and one day seizure in ten months. When my son was born I was having up to ten a day and I was with my partner then. She did not have a problem me being around my son if there was others around me too. Since I've had that one day one she will no longer let me look after my son even tho my brother and mother are constantly with me if I have him. I'm trying to tell my ex that it's unfair. She's telling me I will traumatise him for life. I just want to hear some other opinions from people with epilepsy and possibly there partner's. Thank you

Submitted by lou on

Hi Lou
Thanks for your message. It must be really distressing to be told you can’t look after your son. There are over 600,000 people with epilepsy in the UK, many of whom have children who they care for successfully. As long as a child is in a safe and loving environment, there’s no reason that seeing a parent have a seizure should traumatise them for life. It sounds like you have good support from your family, but you might find our tips for looking after an infant when you have epilepsy useful. If your ex knows that you’ve taken steps to keep your son safe if you were to have a seizure, this might reassure her.

If you don’t get replies here, you could also try posting this message on our online forum for people with epilepsy, forum4e.

I hope this helps. If you have any further questions please feel free to get in touch.

Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

I would like to say my life stroy of an implant in to help me move on for other people . And what I don't like these day people holding children on their heads because that what happened to me

Submitted by Lauren Hunt on

Dear Lauren
Sounds like you've been through difficult times. Please feel free to add your story to our site at epilepsy.org.uk/my-story. Sharing personal histories can be very helpful.

If you want to talk, please feel free to contact us on the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm. We also have several other ways to contact us.

Best wishes
Epilepsy Action

Submitted by Sacha, Epilepsy... on

I have been searching everywhere for a story or something to help explain my epilepsy to my young daughter. Everything else I found was to explain epilepsy to young epilepsy patients. Thank you for taking the time to write about this very important subject it means so much to me.

Submitted by Crystal on

I think these books are a very good start and think we need to make more people aware of them. I want them even though I have no children, as my epilepsy has shrunk my eggs somehow at the mo. My brother has children and doesn't allow me to see them because his ex-wife told him I wanted to kill his kids. Just because I told her it doesn't look like I can have any of my own she called me a liar and then we had a row and she told my brother I wanted to kill them. He believes her. Which I did not say and never would, I love kids and am losing weight so I can have ivf soon. I have asked my mum that even though I can't see my nephews she can at least let them know about their aunts disabilities. She has asked me to get them for her.

I think we need to explain to kids what Jerking is though properly as well because now where there are things like Jerk chicken the two things will get very confused. Thanks

Submitted by Lisa Kemsley on