My child has been diagnosed with epilepsy – now what?

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Epilepsy is among the commonest long-term situations in childhood, affecting one child in each major faculty, and 5 in each secondary faculty on common.

Yet in case your child is diagnosed with the neurological situation – the place the mind’s regular electrical exercise is disrupted, inflicting seizures – chances are high you gained’t know the place to show, or what the longer term holds for you and your child.

To mark International Epilepsy Day on February 12, the charity Young Epilepsy is drawing consideration to the situation and misconceptions surrounding it.

“I think the biggest misconception is about the types of seizures,” says Young Epilepsy youth providers help supervisor, 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 instance, some youngsters and younger individuals have absence seizures – transient, 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, declaring that lecturers will typically assume youngsters simply 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 varieties due to the mind’s various capabilities, and the place within the mind the irregular burst {of electrical} exercise happens.

“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 is going to that journey contain? Nicolaou says dad and mom ought to by no means be scared to ask questions on their child’s remedy: “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 provides.

She says dad and mom must agree an epilepsy care plan with their child’s physician, and may ensure they perceive it absolutely. Parents will most likely should handle a number of medicines and this may be complicated, so it’s finest to ensure directions about medicines – dosage, frequency, instances, and many others – are written down in an easy-to-understand means.

Nicolaou provides: “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 discovered 77% of younger individuals mentioned residing with epilepsy had a major influence on their psychological wellbeing, with among the challenges being nervousness, despair, a way of isolation and being overwhelmed by the methods the situation modified their lives. At the identical time, greater than half didn’t discover it straightforward to speak about their emotions with family and friends.

Epilepsy can have a major influence on a child’s faculty life too – a latest Young Epilepsy survey discovered one in three youngsters with epilepsy don’t get the help they want at college. The #PerceiveMyEpilepsy marketing campaign is asking for all faculties to make sure each younger particular person with epilepsy has an Individual Healthcare Plan (IHP), which helps faculties perceive the specifics of a child’s epilepsy and assist they might want to succeed in 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.”