UK boy receives world’s first epilepsy device implanted in his skull

In a world-first trial, a 12-year-old boy called Oran Knowlson, from Somerset, had a new epilepsy device implanted in his skull. The device, a neurostimulator, sends electrical signals to the brain, significantly reducing daily seizures by 80%. Oran suffers from Lennox-Gastaut syndrome, a severe form of epilepsy that began at the age of three.

Her mother, Justine, told BBC that Oran showed dramatic improvement and described him as “happier” and ultimately having “a much better quality of life”.

Previously, Oran’s epilepsy dominated his life. Justine explained last year: “It robbed him of his entire childhood.” The seizures, ranging from dozens to hundreds daily, involved violent shaking, falling and even loss of consciousness, requiring emergency resuscitation.

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’s treatment is part of a research project (CADET) testing deep brain stimulation for severe epilepsy. The project involves several hospitals (Great Ormond Street, UCL, King’s College and Oxford) and uses a neurotransmitter device manufactured by Amber Therapeutics (United Kingdom).

Epileptic seizures result from abnormal bursts of electrical activity in the brain.

The device, emitting a continuous pulse of current, aims to block or stop these abnormal signals.

Before the operation, Justine expressed her hope: “I want him to rediscover himself through the fog of seizures. I would like to have my son back.”

The surgery, lasting approximately eight hours, was carried out in October 2023.

Under the leadership of consultant pediatric neurosurgeon Martin Tisdall, the team inserted two electrodes deep into Oran’s brain, precisely reaching the thalamus – a crucial 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 square and 0.6 cm thick device, which was positioned in a crack in Oran’s skull, where the bone had been removed.

The neurostimulator was then attached to the surrounding skull with screws to anchor it in place.

Previously, deep brain stimulation for childhood epilepsy involved placing neurostimulators in the chest, linked to the brain by wires extending upward. However, this approach is now evolving.

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.”

Measures are taken to reduce the risk of post-operative infections and ensure long-term device functionality.

After a month of recovery from surgery, Oran’s neurostimulator was activated. Fortunately, it’s completely painless and wirelessly rechargeable via headphones, allowing him to enjoy activities like watching TV without interrupting his daily life.

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 learning horse riding lessons.

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.

The neurotransmitter Picostim is manufactured by the British company Amber Therapeutics. It sits under the skull and sends electrical signals deep into the brain, reducing daytime seizures. The CADET pilot will now recruit three additional patients with Lennox-Gastaut syndrome, with the goal of recruiting 22 patients to participate in a full study.