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A brain implant reduced this boy’s epilepsy seizures by 80%. And he charges it with headphones

Before he got his new brain implant, 13-year-old Oran Knowlson's whole life revolved around his seizures.

Device is the 1st of its kind, but it uses a well-established treatment called deep brain stimulation

A boy with space pajamas and matching wallpaper lies in bed with a pair of headphones on, sipping from a mug.

Before he got his new brain implant, 13-year-old Oran Knowlson's whole life revolved around his seizures.

The British boy has a rare, medicine-resistant form of epilepsy that caused him to have hundreds of seizures a day, putting him at constant risk of injury, and making it impossible to participate in the same activities as other kids his age.

But since his surgery at Great Ormond Street Hospital For Children in London eight months ago, Oran has seen his seizures reduced by 80 per cent, according to his surgeon. As a result, he's taken up some new hobbies — including horseback riding.

"It's absolutely lovely," Dr. Martin Tisdall, the pediatric neurosurgeon who led the surgery, told As It Happens host Nil Koksal.

"The family are really putting their trust and their faith in you, and so it's incredibly pleasing to see the positive benefits it's had on his quality of life."

The device, which sends electrical pulses to the brain to block seizures, is the first of its kind to be embedded directly into the brain, and Oran is the first patient in the world to have one implanted, as part of a clinical trial in the U.K.

This type of electrical stimulation has been used to treat epilepsy patients before, and usually involves placing a device inside the chest that needs to be replaced every few years. But Oran's implant is nestled under his skull, and he can charge it from the comfort of home, just by wearing a special pair of headphones.

If it continues to work well with Oran and in subsequent trials, doctors say it could be used more widely to help children with medicine-resident epilepsy, without forcing them to undergo repeated surgeries all their lives.

Getting her son back

Most people who have epilepsy can manage it with medicine alone. In the rare cases where medicine doesn't work, patients can undergo surgery to remove the part of the brain that triggers seizures.

But Oran has Lennox-Gastaut syndrome, a rare form of epilepsy that's not only resistant to medicine, but is also too generalized throughout the brain to be targeted in surgery.

"These children do not have good treatment options at the moment," Tisdall said. "So without us carrying out further research and developing further treatments, they're really looking at a lifetime of seizures ahead of them."

A man leads a horse with a smiling boy on its back.

In Oran's case, those seizures began when he was three years old and became progressively worse. Eventually, Oran was experiencing hundreds of seizures a day, Tisdall said.

"Before the seizures began, Oran was hitting all his milestones. But as seizures became more severe, we lost more and more of Oran," his mother, Justine Knowlson, said in a hospital press release.

"From being a happy, energetic three-year-old, he struggled to engage in the world."

Some seizures would cause Oran to lose consciousness as his body convulsed, Tisdall said. Others, known as "drop seizures," would cause him to fall suddenly, and sometimes hurt himself in the process.

Knowlson and her son were not available for comment for this story, but she told the BBC that it's been night and day since he had the device installed.

"I'm definitely getting him back slowly," she said.

How does it work?

Epilepsy seizures are triggered by abnormal bursts of electrical activity in the brain. The brain implant emits a current that blocks those bursts.

During surgery, Tisdall and his colleagues placed electrodes into a part of Oran's brain called the thalamus, a key hub for the connection of electrical impulses in the brain. They then installed a pulse generator under his skull, which serves a battery that also produces electrical pulses that then travel through the electrodes and into the brain.

A bald man points at a computer screen showing a brain X-ray lit in purple and orange

The process is called deep brain stimulation and it's already an established method for reducing epilepsy seizures, and treating several other brain conditions, says neurosurgeon Dr. David Steven, who was not involved in Oran's treatment.

But, usually, the battery is placed in the patient's chest like a pacemaker, with wiring running up the neck, under the skin, to the electrodes in the brain.

That's because the chest is simply an easier and less invasive place for surgeons to access, says Steven, a professor at Western University in London, Ont., and surgical co-director of the epilepsy program at the city's London Health Sciences Centre.

And that's important, because surgeons need to access the device quite often.

"Most conventional deep brain stimulation devices do not have a rechargeable battery. And so every three to five years, the patient or the child would have to go through further surgery to change the battery," Tisdall said.

"[Oran's] device is rechargeable. So every evening, he'll sit for, maybe, just 30 minutes watching television with a pair of headphones on, and that's enough to keep the battery topped up.

A smiling boy on a bicycle

Another benefit of having the entire device in the brain, Tisdall says, is that it should be more resistant to wear and tear as Oran grows. A problem with running wires through the body is that, as children get bigger, the wires can stretch.

Steven says this has the potential to be a promising innovation for deep brain stimulation — especially for children, who are at greater risk from surgery.

"We know that deep brain stimulation is beneficial in some patients with epilepsy. That's not so much the question," he said.

"I think the question here would be: Does this type of implantation, being in the skull and with the rechargeable aspect of it, provide a greater patient satisfaction or family satisfaction rate?"

What's next?

So far, the feedback from Oran's family has been incredibly positive.

"He's now able to, you know, think about going on holidays, to go out with his mom, and … to be out riding a horse and having fun and looking quite cheeky whilst he's doing it," Tisdall said. "It's absolutely great to see."

But there will be further testing ahead, both for Oran and 22 other patients who will undergo clinical trials, he said.

"There are many children who have epileptic seizures which are not controlled by medication. And that's why it's so important that we carry out these types of research studies," Tisdall said.

"So that we can, in time, hopefully make these therapies available to lots more children."

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