information for children

[Bluenote9]

Hi all. New to the newsfeed 😁 . Does anyone know of any available resources to help children understand epilepsy and feel safe when mum goes out? I was thinking of a health professional who can inform my son of what he can do. Needs to be somebody external so he will take it on board so to speak. Has anybody done this? Thank you 🙏

[EpilepsyAction1 Partner Epilepsy Action]

Dear Bluenote9

It’s understandable you wish to help your son understand about epilepsy and knowing what to do if you had a seizure is also helpful. To help with this we have some helpful pages on our website:

My mum has epilepsy (we have a printed version of this book. Private message your details if you would like a copy sending. Do not post it on the forum)

epilepsy.org.uk/app/uploads...

General epilepsy information for children.epilepsy.org.uk/living/pare...

Safety – this includes safety outside the home. This can help you reassure him you are keeping safe whilst out epilepsy.org.uk/info/safety

Daily living aids -alarm and phone apps epilepsy.org.uk/info/daily-...

It’s important, at such a young age, your son doesn’t feel responsible for you during a seizure. He just needs to know how to contact another adult, including 999.

When you decide he is old enough to do first aid for a seizure we have information on this on our website. epilepsy.org.uk/info/firstaid

We are not aware of any specific face to face session for your son to attend. You could see if a school nurse may be able to help or if you have an epilepsy nurse, they may talk to your son. You could also see if the pastoral care team at his school could help. Schools have different names for this service.

If all else fails, you and your son could phone our helpline team. We would be more than happy to talk to him. The Epilepsy Action Helpline freephone 0808 800 5050 is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm.

Communicating with people on here and through other social media, is a really good idea. So, I hope you hear from others in this community soon.

If you don’t, as well as managing the HealthUnlocked community, Epilepsy Action has other ways for you to contact others. These are:

Facebook facebook.com/epilepsyaction

Twitter twitter.com/epilepsyaction

Talk and Support epilepsy.org.uk/talk-and-su...

Regards

Diane

Helpline Team

[Bluenote9 in reply to EpilepsyAction1]

Dear Diane,

Thank you so much for your reply-it’s very helpful.

I do have the book you suggested which has been a great starting point.

I will look at the other support systems you suggested and helpful tools such as as phone apps and alarms. I think contacting school will be a good step too.

Many thanks