How did you find out your son Jasper had epilepsy? What was your immediate reaction to the news?
Alice: Jasper’s epilepsy story has two chapters. He was diagnosed with infantile spasms at five months, but we were one of the very few lucky families for whom treatment worked. Infantile spasms are a form of epilepsy usually associated with other, permanent conditions so it rarely responds fully to treatment. In Jasper’s case, there were no other conditions, and the medication did work. By the time he was one he was back to being a healthy and happy little boy, completely drug and seizure-free. We asked at the time what the chances were of the epilepsy returning, but so few children come through infantile spasms with no obvious cause the doctors said they simply didn’t know.
That was it until he was nine. We were on the bus on the way to school one day and I noticed Jasper had gone rigid and his eyes were at a weird angle. He came out of it after a few minutes and when I asked him about it, he said this happened all the time and he’d been meaning to talk to me about it.
Because of what he’d been through as a baby, I knew what it was straight away. I dropped him at school and waved him off as though nothing had happened. I didn’t want to worry him. I then walked around the corner, out of sight of the school, and broke down. I sat in the driveway of someone’s house and just sobbed and sobbed for about an hour.
How has epilepsy interrupted your family life?
Alice: We try as much as possible not to let it, but it has. For Jasper, the biggest interruption has been to his school and social life. During Year 5, the seizures became so frequent that it wasn’t practical for him to stay in class. He couldn’t follow what was going on in lessons and was so exhausted it was making him more ill. Getting him to school was impossible – I can’t drive and we couldn’t travel by bus without him having a seizure.
In the end we decided to home school for a couple of terms. It was the best thing for his learning, but it meant he missed out on so much in the way of social life. Jasper is back at school now, but it’s been difficult for him to get back into it. He’s had to work incredibly hard to build up his stamina, catch up on the work he’s missed, and reforge friendships. The effects of that kind of interruption last a while.
Richard: It’s also been hugely difficult for his little sister. She’s just turned seven and doesn’t fully understand what’s going on when Jasper has a seizure. All she knows is that one minute she’s playing happily with mummy and the next that all gets interrupted because everyone has to pay attention to Jasper. A few months ago, she had to take a short course of antibiotics. It tasted foul but she loved taking it because, she told us, now she had to take medicines like Jasper she’d get attention too. We could not have felt worse.
Jasper is back at school now, but it’s been difficult for him to get back into it. He’s had to work incredibly hard to build up his stamina, catch up on the work he’s missed, and reforge friendships. The effects of that kind of interruption last a while.
What are your hopes for the future of research into epilepsy?
Alice: Of course, one day we would like a complete cure, but epilepsy is complicated and it’s not really just one condition, so that could be a long way off. What can and should happen now is a new generation of drugs.
Richard: We have had amazing medical support throughout, but if I’m honest, I don’t feel the side effects of these drugs are taken as seriously as they should be. For too many people, Jasper included, seizure control can only come if you accept side effects that are utterly debilitating. What’s the point of stopping the seizures if Jasper is so depressed and full of panic attacks, he can’t leave the house, or so dazed he has no idea what anyone is saying to him? That’s not a cure; that’s not even ‘managed’. We urgently need more targeted treatments, and that can only happen with research.
– Alice and Richard, April 2021
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