Epilepsy is one of the most common long-term conditions in childhood, affecting one child in every primary school, and five in every secondary school on average.
Yet if your child is diagnosed with the neurological condition – where the brain’s normal electrical activity is disrupted, causing seizures – chances are you won’t know where to turn, or what the future holds for you and your child.
To mark International Epilepsy Day on February 12, the charity Young Epilepsy is drawing attention to the condition and misconceptions surrounding it.
“I think the biggest misconception is about the types of seizures,” says Young Epilepsy youth services support manager, Marianna Nicolaou. “Everybody seems to think there’s two types of seizures, either one where a young person will fall to the floor, or the photosensitive seizures, where they’re sensitive to light. But actually, there are about 50 different types of epilepsy.”
Nicolaou explains that, for example, some children and young people have absence seizures – brief, sudden lapses of consciousness.
“They can be in the classroom and it will come across like they’re daydreaming, but actually, they’re just completely absent,” she says, pointing out that teachers will often think children just aren’t listening. “They think they’re putting it on, but the reality is they do not remember a single thing while they’re having seizures.”
Nicolaou stresses that seizures can take many forms because of the brain’s diverse functions, and where in the brain the abnormal burst of electrical activity occurs.
“I think people don’t realise that because there are so many different types of epilepsy, everybody has a different experience,” she says. “A lot of the time, we get parents that are so scared about their child having epilepsy – we’ve had parents that have had to give up work in order to be able to support their child, and we have parents that are so worried because their child has nocturnal seizures, that they sleep in the same room and are constantly awake throughout the whole night.
“So it really can completely change parents’ lives. And it’s living in constant fear. We support them to alleviate some of that fear, and through the journey.”
But what will that journey involve? Nicolaou says parents should never be scared to ask questions about their child’s treatment: “Before an appointment, write down any questions you have, as it’s easy to forget them when you’re in the clinic or distracted by your child. No question is silly or irrelevant, so say what’s on your mind, because you may regret it if you don’t.
“If you don’t understand an answer, don’t be afraid to ask the doctor, specialist or nurse to make it clearer,” she adds.
She says parents need to agree an epilepsy care plan with their child’s doctor, and should be sure they understand it fully. Parents will probably have to manage multiple medications and this can be confusing, so it’s best to make sure instructions about medications – dosage, frequency, times, etc – are written down in an easy-to-understand way.
Nicolaou adds: “Although your doctor can’t know everything that’s going to happen, it’s OK to ask about the future. This could include the long-term prognosis, whether your child is likely to be able to control their seizures or grow out of them, what you should expect over the coming months and years, and what the impact will be on your child’s development.”
A Young Epilepsy survey found 77% of young people said living with epilepsy had a significant impact on their mental wellbeing, with some of the challenges being anxiety, depression, a sense of isolation and being overwhelmed by the ways the condition changed their lives. At the same time, more than half didn’t find it easy to talk about their feelings with friends and family.
Epilepsy can have a significant impact on a child’s school life too – a recent Young Epilepsy survey found one in three children with epilepsy don’t get the support they need at school. The #UnderstandMyEpilepsy campaign is calling for all schools to ensure every young person with epilepsy has an Individual Healthcare Plan (IHP), which helps schools understand the specifics of a child’s epilepsy and help they may need to reach their full potential.
“A lot of the time, we get young people that come to us that are extremely socially isolated,” Nicolaou explains. “They’re told they can’t do normal things that they’d do with their friends. A lot of the time, with schools as well, they’re excluded from going on school trips, and from taking part in PE, and all those kinds of things.
“So we come in as a support network to let them know what their rights are as a young person with epilepsy, and to empower parents to know what their rights are as well.”