British boy receives world’s first epilepsy treatment device in skull

A boy with severe epilepsy has become the first patient in the world to try out a new intracranial device to control seizures.

A neurostimulator that sends electrical signals deep into the brain has reduced Oran Noorsson’s daytime seizures by 80%.

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

The operation took place as part of a clinical trial at London’s Great Ormond Street Hospital in October when Oran, now 13, was 12 years old.

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

Since then, he has suffered between 20 and several hundred seizures every day.

When I spoke with Oran’s mother for the first time last fall before his surgery, she explained how Oran’s epilepsy had dominated his life: “It robbed him of his entire childhood.”

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

At times, he would stop breathing and emergency medication would be required to resuscitate him, she said.

Oran has autism and ADHD, but Justin says epilepsy is by far his biggest obstacle: “I had a fairly bright child at three years old, but within a few months of the seizures starting he rapidly deteriorated and lost a lot of his abilities.”

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

The collaboration includes Great Ormond Street Hospital, University College London, King’s College Hospital and the University of Oxford.

Picostim neurotransmitter is manufactured by the British company Amber Therapeutics.

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

The device emits a constant pulse of current, intended to block or jam abnormal signals.

Before his surgery, Justin told us, “In the midst of the chaos of his seizures, I want my son to feel like himself again. I want my son back.”

The surgery, which lasted approximately eight hours, took place in October 2023.

The research team, led by consultant paediatric neurosurgeon Martin Tisdall, inserted two electrodes deep into Oran’s brain until they reached the thalamus, a key relay point for neural information.

Lead placement error was less than 1 millimeter.

The ends of the leads were connected to a 3.5-centimeter-square, 0.6-centimeter-thick neurostimulator that was placed in a gap in Oran’s skull where the bone had been removed.

The neurostimulator was then screwed into the surrounding skull and secured in place.

Deep brain stimulation has been tried before to treat childhood epilepsy, but until now it involved inserting a neurostimulator into the chest and running wires to the brain.

Martin Tisdall told the BBC: “We hope that this research will enable us to identify whether deep brain stimulation is an effective treatment for this severe form of epilepsy. We are also investigating a new type of device which could be particularly useful for children because the implant is placed in the skull rather than the chest.”

“We hope this will reduce potential complications.”

This includes reducing the risk of post-operative infection and device failure.

Oran was given a month to recover from the surgery before the neurostimulator was activated.

While it’s powered, Oran won’t feel it, so you can charge your device every day with wireless headphones while doing what you love, like watching TV.

We visited Oran and his family seven months after the surgery to see how they were doing. Justin told us that Oran’s epilepsy symptoms had improved significantly: “He’s more alert and he no longer has daytime seizures.”

Nighttime attacks have also “become shorter and milder,” he said.

“I’m getting him better, slowly but surely,” she said.

“We are delighted that Oran and his family have benefited so much from this treatment, with his seizures and quality of life improving dramatically,” said Martin Tisdall.

Oran is now taking riding lessons and is clearly enjoying it.

A nurse is on standby with oxygen and a teacher is always nearby just in case, but so far neither has been needed.

Three more children with Lennox-Gastaut syndrome will be fitted with deep brain stimulators as part of the trial.

Oran now receives constant electrical stimulation from the device.

In the future, however, the team plans to have the neurostimulator respond to changes in brain activity in real time in order to stop seizures as they occur.

Justin said he was most excited about the next stage of the trial, saying: “The team at Great Ormond Street have given us hope back… the future now looks brighter.”

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

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