World’s first epilepsy device installed in boy’s skull in UK

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

The neurostimulator, which sends electrical signals deep into the brain, reduced Oran Knowlson’s daytime seizures by 80 percent.

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

The surgery was carried out in October as part of a trial at Great Ormond Street Hospital in London, when Oran – who is now 13 – was 12.

Oran, from Somerset, has Lennox-Gastaut syndrome, a treatment-resistant form of epilepsy that he developed at the age of three.

Since then, he has suffered multiple daily seizures, ranging from two dozen to hundreds.

When we first spoke to Oran’s mother last fall, before surgery, she explained how Oran’s epilepsy dominated her life: “It robbed her of her entire childhood.”

She told us that Oran had a series of different seizures, including ones where he fell to the ground, shook violently and lost consciousness.

She said he sometimes stopped breathing and needed emergency medication to resuscitate him.

Oran has autism and ADHD, but Justine says his epilepsy is by far his biggest obstacle: “I had a very bright three-year-old son, and within a few months of the seizures starting he deteriorated rapidly and 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 involves Great Ormond Street Hospital, University College London, King’s College Hospital and the University of Oxford.

The neurotransmitter Picostim is manufactured by the British company Amber Therapeutics.

Epilepsy seizures are triggered by abnormal bursts of electrical activity in the brain.

The device, which emits a constant pulse of current, aims to block or stop abnormal signals.

Before the operation, Justine told us: “I want him to find some of himself again through the fog of the seizures. I would like to have my son back.”

The surgery, which lasted around eight 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, a key relay station for neuronal information.

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

The ends of the electrodes were connected to the neurostimulator, a 3.5 cm, 0.6 cm thick square device that was placed into a slot in Oran’s skull where the bone had been removed.

The neurostimulator was then screwed into the surrounding skull to anchor it in place.

Deep brain stimulation has been tried before for childhood epilepsy, but until now neurostimulators have been placed in the chest, with wires running up to the brain.

Martin Tisdall told the BBC: “We hope this study will allow us to identify whether deep brain stimulation is an effective treatment for this severe type of epilepsy and is also looking at a new type of device, which is particularly useful in children because the implant is in the skull and not the thorax.

“We hope this reduces potential complications.”

This includes reducing the risk of infections after surgery and device failure.

Oran was given a month to recover from the operation before the neurostimulator was turned on.

When it’s on, Oran can’t feel it. And he can recharge the device every day through wireless headphones, while doing things he enjoys, like watching TV.

We visited Oran and his family seven months after the operation to see how they were doing. Justine told us that there has been a huge improvement in Oran’s epilepsy: “He is more alert and has no seizures during the day.”

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

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

Martin Tisdall said: “We are delighted that Oran and his family have seen such a huge benefit from the treatment and that it has dramatically improved his seizures and quality of life.”

Oran is now taking riding lessons, which he clearly enjoys.

Although a nurse is on hand with oxygen and one of his teachers is always nearby just in case, neither has been needed so far.

As part of the study, three more children with Lennox-Gastaut syndrome will receive the deep brain neurostimulator.

Currently, Oran receives constant electrical stimuli from his device.

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

Justine said she was very excited about the next phase of the trial: “The team at Great Ormond Street have given us hope back… now the future looks brighter.”

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

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