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Pioneering device controls epileptic seizures

Oran chilling out wearing headphones

A boy with severe epilepsy has been fitted with a pioneering device to help control his seizures.

Oran Knowlson, from Somerset, was 12 when he underwent the procedure at Great Ormond Street Hospital in London last year where surgeons inserted a neurostimulator into his skull.

The patient, now 13, has Lennox-Gastaut syndrome which he developed from the age of three.

But since being fitted with the device, which sends electrical signals deep into the brain, his daytime seizures have reduced by 80%.

Before being admitted to GOSH the teenager experienced between two dozen to hundreds a day.

Ahead of the procedure, his mum, Justine, told BBC News last Autumn that her son’s condition “has robbed him of all of his childhood."

Oran, who also lives with autism and ADHD, experiences severe seizures which can make him fall over, lose consciousness and shake violently. 

His mum said his epilepsy is by far the most difficult condition to control.

Justine said: "I had a fairly bright three-year-old, and within a few months of his seizures commencing he deteriorated rapidly, and lost a lot of skills."

Oran is part of the CADT project, an initiative which sees a partnership between Great Ormond Street Hospital, University College London, University of Oxford and King’s College London working together accessing the safety and effectiveness of deep brain stimulation for severe epilepsy through a program of trials.

But how does this so-called neurostimulator control seizures?

Seizures are sparked by abnormal chunks of electricity activity in the brain, the device attempts to stop, or at least disrupt, the random activity by triggering a constant pulse of current.

Ahead of her son going under the knife, Justine said: "I want him to find some of himself again through the haze of seizures. I’d like to get my boy back."

Oran’s operation went ahead in October 2023, the procedure lasted for around eight hours. The young patient had two electrodes inserted deep into his brain until they reached the thalamus, which is the vital part of the organ for neuronal information.

Both electrodes were connected to the neurostimulator, which was placed in Organ’s skull where the bone had been removed, before being screwed into place.

the neurostimulator device

The neurostimulator device

The medical team was led by consultant paediatric neurosurgeon Martin Tisdall, who told the BBC: "This study is hopefully going to 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 in the chest.

"We hope this will reduce the potential complications."

After being given a month to recover from the op, Oran was ready for his neurostimulator to be switched on.

When active, he can’t feel the device and if it’s running out of juice he can simply recharge it using wireless headphones.

But the main question is…is it working?

Justine said: “He is more alert and with no drop seizures during the day."

As for the night-time seizures, they are becoming "shorter and less severe".

Tisdall told the BBC: "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."

Just in case, there’s a nurse on standby with oxygen and one of his teachers is nearby - but to date, neither have been required.

Oran is one of four children with Lennox-Gastaut syndrome to be fitted with the neurostimulator which, at this stage, triggers constant electrical stimulations.

In the future it’s hoped the technology will advance to responding in real time to changes in the brain activity so it can block seizures before they occur.

Justine said: "The Great Ormond Street team gave us hope back…now the future looks brighter."

[ Oran is now having riding lessons. ]

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