When Lisa’s young son Xavier had his first seizure, she thought she was losing him. With no family history of epilepsy, the diagnosis came as a shock. In this honest account, Lisa shares how her family has adapted, the challenges they’ve faced, and her hopes for Xavier’s future.
A sudden shock
Lisa remembers the moment - and the shock - vividly. Her son Xavier had just turned three and was chatting happily after nursery. As they waited for the bus, he suddenly became silent and stared past her at a brick wall.
I said his name, I asked if he needed the toilet - I didn’t know what was happening
Then Xavier collapsed into a seizure that lasted nearly half an hour.
It was so out of the blue. No one in the family has epilepsy - it wasn’t even something on my radar.
Despite being a mental health nurse, Lisa found the experience terrifying.
I’m calm and methodical in emergencies - but it hit me afterwards. A policewoman who was helping thought I wasn’t his Mum because I was so calm. But I honestly thought we were losing him.
The long road to diagnosis
After the first seizure, Xavier was taken to hospital. His observations were normal, and the family was sent home. But within hours, he had another seizure.
We thought maybe it was a one-off. The second one was a real shock.
Eventually, Xavier was diagnosed with epilepsy with bilateral tonic-clonic seizures, possibly with focal onset. A scan also revealed Arnold Chiari Type 1 malformation - a structural issue at the base of the skull. The formal epilepsy diagnosis came on Christmas Eve.
It wasn’t a surprise by then, but it wasn’t very Christmassy. We’d hoped for a lovely day, but it was hard to take in.
Managing medication and triggers
Xavier began anti-seizure medication in March. The first dose of Keppra had a dramatic effect.
He was trying to punch and kick us - it was like he wasn’t himself. He’s such a sweet boy normally. It was awful to see.
Fortunately, the side effects settled. But getting Xavier to take his medicine remains a challenge.
If he’s unwell, he’ll accept it. But when he feels fine, he doesn’t think he needs it. We have to put it in his drink and hope he finishes it.
Lisa tracked Xavier’s seizures carefully and noticed patterns of his seizure triggers.
He’d have been to breakfast club, school and nursery - all of them - on the days he had seizures. So we thought tiredness and stress might be triggers. We’ve stopped breakfast club now.
Family life and adjustments
The impact on family life has been profound. It’s a full house: Lisa and her husband Chris have a blended family, with several children and complex needs. Shortly after they were told of Xavier’s condition, they witnessed a seizure.
Within 30 minutes he'd had one. So I'm glad we told them. But they were very frightened that night as well.
You can’t leave Xavier alone at all. We’ve had friends and babysitters who don’t feel comfortable looking after him.
Even wider family members are hesitant.
You end up not asking because you don’t want to make people uncomfortable.
It’s made Lisa more self-reliant - and despite her own expectations, she passed her driving test after Xavier’s seizures began.
I’d always said I’d never drive. But I didn’t want to be stuck at a bus stop again. Now I can get him to hospital if I need to.
Support at nursery and school
The nursery staff were shocked when Xavier had his first seizure just outside their premises.
They said he’d been absolutely fine just before. I think they doubted themselves - they were really shaken.
Since then, a specialist health team has provided personalised training to both nursery and school staff.
The nursery said it made them feel more equipped to deal with it.
But school could still pose new challenges.
He’s going up to a new class in September, and I’m anxious. You trust the staff he’s had, and now it’s all changing.
Looking ahead
Xavier’s future could pose new worries - about sleepovers, learning to drive, and independence. Lisa’s started introducing him to the idea of epilepsy gently.
We bought him a book called Epilepsy and Me. It talks about tablets and hospital - it’s a way to start the conversation.
She hopes to get Xavier an epilepsy watch when he turns six.
If you don’t feel ill, you don’t see it as an illness. That’s how it is in a four-year-old’s eyes.
I just don’t want him to be held back. I hope he doesn’t realise he’s different.
Coping and connecting
Lisa and Chris have relied on their professional knowledge and online research to understand epilepsy.
We want to do the best we can for him. We’ve had a great epilepsy link nurse who gave us her mobile number. It’s so helpful to be able to ask questions after appointments.
They haven’t yet connected with other families, though Lisa is keen to.
Apparently there are two other children at school with epilepsy. I’d like to link in with them.
She’s also fundraising for the John Shaw Foundation, which donated Xavier’s seizure blanket.
I’ve signed up for the Cardiff Half Marathon. The blankets cost around £400 - even if I can fund one, it’ll be worth it.
A message to other parents
Lisa’s advice to other parents is simple.
Read up as much as you can. Make yourself confident in managing the condition. Don’t be afraid to ask professionals questions - even after the appointment. Give him a voice.
Above all, she wants Xavier to live fully.
I’d love kids to see it not as a disability, but just something they live with.
