Living with epilepsy - No seizure is the same

23 Mar 2023

Claire Bishop is mother to five children aged between 7 and 16. Her 13 year old boy Alfie and one of her twin daughters Millie live with epilepsy. Her other twin daughter has neurofibromatosis type 1. There are a lot of medical appointments to attend, medicines to try, side-effects to manage, seizures to monitor and manage - and all around a busy family life.

Claire spoke to us ready for Purple Day on March 26th to help explain the impact epilepsy can have on those in a caring role. She also shared some of her experiences with parenting and caring for a family where epilepsy is part of daily life.

No seizure is the same

Alfie has multi-focal epilepsy making his condition too complex for brain surgery. He has a vagal nerve stimulator which is designed to break the patterns in his seizures. His prolonged seizures are less common since fitting and he seems more rested suggesting he is experiencing less nighttime seizures but he still has daily absent and focal seizures that Claire has to watch for.

Claire explains how, one of the ways she can tell whether Alfie is having a seizure is to check his oxygen saturation levels. She explains checking on him during a focal seizure when he was able to engage but not speak to her, so she thought it wasn't a 'bad' one - only to check his oxygen levels and find they had dropped to 50% and he needed emergency care.

'There are so many unknowns with epilepsy, so much we don't know. It's the hardest part of it. If there was a way to predict whether it's going to be a bad day, or even to be able to tell whether it's been a bad night and might mean a difficult day emotionally, that would be great. But we never know.'

When her younger child Millie had her first seizures, despite her experience with Alfie, she didn't notice what they were immediately.

'She would just drop, there wasn't anything there to trip her - she needed stitches in her chin twice, her lip once - with hindsight it was a seizure, but we didn't realise that at the time.'

It was Millie's first prolonged seizure which caused respiratory arrest that led to her diagnosis, although initially she was told that it didn't look like a 'typical seizure' and was almost sent home.

'No seizure looks the same, there isn't a typical seizure. I know it must be so difficult, but if there could be more education for healthcare professionals - or if they could listen to those of us who are really familiar, and take our opinions too, that could make a difference.'

Optimised education, compassionate care

Epilepsy Academy seeks to raise awareness of epilepsy, equipping professionals to deliver compassionate, holistic care that transforms people's lives.