World's first epilepsy device fitted to British boy's skull

1 day ago

By Fergus Walsh, Medical Editor

BBC

Oran (right) with his mother, brother and sister

A boy with severe epilepsy has become the first patient in the world to test a new device mounted on the skull to control seizures.

A neurostimulator that sends electrical signals deep into the brain reduced Oran Knowlson's daytime seizures by 80%.

His mother Justine told the BBC he was happier and had a much better quality of life.

The surgery was carried out as part of a clinical trial at London's Great Ormond Street Hospital last October, when Oran, now 13, was 12.

Oran, from Somerset, suffers from Lennox-Gastaut syndrome, a treatment-resistant form of epilepsy that began when he was three years old.

Since then, he has had between 20 and 100 seizures every day.

When I first spoke with Orans' mother before surgery last fall, she described how Orans' epilepsy had dominated his life. “It took away his whole childhood,” she said.

She said Oran suffered various seizures, including falling to the ground, shaking violently and losing consciousness.

She said sometimes he would stop breathing and emergency drugs would be needed to resuscitate him.

Oran has autism and ADHD, but Justin said his epilepsy was his biggest obstacle. “I had a three-year-old who was quite intelligent, but within a few months of the onset of the seizures, his condition deteriorated rapidly and he lost many skills.”

Oran is part of the CADET project, a series of trials evaluating the safety and effectiveness of deep brain stimulation for severe epilepsy.

The partnership includes Great Ormond Street Hospital, University College London, Kings College Hospital and the University of Oxford.

Picostim neurotransmitter is manufactured by Amber Therapeutics, a British company.

How it Works

This device stimulates part of the brain.

Epileptic seizures are caused by abnormal bursts of electrical activity in the brain.

These devices, which emit constant pulses of current, aim to block or disrupt abnormal signals.

Before the surgery, Justin said: “I hope he can find himself again in the fog of the seizures. I want my son back.”

The surgery, which lasted about 8 hours, took place in October 2023.

The team, led by consultant pediatric neurosurgeon Martin Tisdall, inserted two electrodes deep into Oran's brain until they reached the thalamus, the main relay station for neural information.

The margin of error for lead placement was less than one millimeter.

The ends of the leads were connected to a neurostimulator, a 3.5 cm square and 0.6 cm thick device placed in a crevice in Orans' skull from which the bone had been removed.

The nerve stimulator was then screwed into the surrounding skull to secure it in place.

The device is screwed into the bone.

Deep brain stimulation has been attempted before for pediatric epilepsy, but until now, a neurostimulator had been placed in the chest and wires threaded up to the brain.

Martin Tisdall told the BBC: “We hope that this research will help us establish whether deep brain stimulation is an effective treatment for severe forms of epilepsy. We are also exploring new types of devices that may be particularly useful in children. Implants It's in the skull, not the chest.

“We hope this will reduce potential complications.”

This includes reducing the risk of postoperative infection and device failure.

justin nolson

Oran's wireless headphones allow you to charge your devices.

Oran was given a month to recover from the surgery before being put on a nerve stimulator.

When it's on, Oran can't feel it. And he can recharge the device daily via wireless headphones while doing something he enjoys, like watching TV.

We visited Oran and his family seven months after surgery to see how they were doing. Justine said Oran's epilepsy has improved significantly. “He was more alert and didn’t have any drop attacks during the day.”

His nocturnal attacks are also “shorter and less severe.”

“I’m definitely slowly getting him back,” she said.

Martin Tisdall said: “We are delighted that Oran and his family have benefited enormously from this treatment and that his seizures and quality of life have improved dramatically.”

Oran is currently taking horseback riding lessons, which he is clearly enjoying.

There is a nurse administering oxygen just in case and one of the teachers is always nearby, but so far neither has been needed.

As part of the trial, three children with Lennox-Gastaut syndrome will be fitted with deep brain nerve stimulators.

Currently, Oran is receiving continuous electrical stimulation from his device.

‘The future looks brighter’

But in the future, the team plans to make the neurostimulator respond in real time to changes in brain activity to block seizures when they are about to occur.

Justine said she is most excited about the next phase of the trial. “The Great Ormond Street team has given us hope that the future now looks brighter.”

Oran's family knows his treatment is not a cure, but they are optimistic he will continue to emerge from the shadow epilepsy has cast.

The Picostim neurostimulator, owned by Amber Therapeutics, has also been used to treat patients with Parkinson's disease.

Another type of skull-mounted neurostimulator has been used to treat epilepsy in the United States.

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