What are classmates told about seizures?

Hello,
My daughter had her first daytime seizure yesterday which we think was a focal impaired awareness seizure, though awaiting review from her epilepsy team. Her previous seizures have all been nocturnal tonic-clonic, which has it’s own set of difficulties – but at least at night she is at home and under our care. Now she has gone back to school (primary, Y5) and I’m wondering how the school will recognise and deal with any episodes.

My question is – to any parents in a similar situation and young epilepsy sufferers, particularly at primary school – are other children (friends, classmates) told about the potential seizures? It’s quite likely that if it happens again, it will be a classmate who notices first. Obviously they shouldn’t be burdened with the responsibility of recognising a seizure, nor would I want her classmates to be constantly wondering if my daughter is having a seizure. Is there an accepted approach to this at primary school? I will be asking the epilepsy nurses but appreciate hearing of any other experiences.

Hi,

I realise this is a bit of a late follow up to your message so you probably have dealt with this now but it might be interesting to share experiences.
My 9 year old started having focal seizures in mid-October. She has several a day. At first they were quite subtle with her turning to the right but they have changed over the weeks and now she turns so strongly she will always fall, making them more obvious. Sometimes she wets herself.
In terms of communication with friends, in the very first week she had seizures she only wanted one friend to know. Within two weeks she wanted a group of friends to know so I sent a message to their parents (it was half term holidays). A few days later back at school she decided she wanted the whole class to know and the teacher briefed them all. We let her make this decision but it was definitely a good one as it took away any worry or shame. The kids (year 4) just took it all in and aren’t bothered by it. It has helped normalise it. Subsequently we agreed with the school that all the children in the school should be told because my daughter and her older brother were getting unwanted attention “look, look, your sister is having a seizure in the playground” etc. It was just because it was unknown and a bit of a spectacle. Each class had a ‘circle time’ chat about epilepsy and specifically about my daughter having it. My daughter agreed to this. It totally normalised it and led to lots of intelligent and thoughtful conversations for the children.
In terms of briefing the staff, I wrote them a briefing document about my daughter’s seizures and her class teacher delivered it to them in a staff meeting. He also made a version of this for the other teachers to use in their circle time chat with their classes.
I don’t know how you have gone about this now but I definitely have found being as open as possible has helped.

Thanks for your reply – it’s really useful to read about others’ experiences and I thoroughly sympathise; it’s not an easy thing to deal with, especially as seizures change in nature. It sounds as though you’ve managed it in the best way possible, especially consulting with your daughter about whom to tell. I hope her seizures are better controlled now.
My daughter’s seizures are pretty well controlled by medication so – to our knowledge – she’s not had one since January when we increased her medication dosage. Since they’re so rare, it does seem over the top to talk to all the children at school about it, although I think my daughter has ended up telling a lot of her classmates about her epilepsy. It helps her to explain why she no longer swims with the rest of the class (she has a separate 1:1 session) and why she has extra support with classwork, etc. As far as the wider school goes, like you I’d think we’d mention it if her seizures become more frequent or obvious.