A schoolboy with severe epilepsy has become the first patient in the world to trial a new device fitted to his skull that has given him a ‘much better quality of life.’
The neurostimulator, which sends electrical signals deep into his brain, has reduced the 13-year-old’s daytime seizures by 80%.
Oran Knowlson, from Somerset, has Lennox-Gastaut syndrome, a treatment-resistant form of epilepsy which he developed at the age of three.
Since then, he has suffered several daily seizures ranging from two dozen to hundreds, and some where he fell to the ground, shook violently and lost consciousness.
His mum, Justine, said at times he would stop breathing and require emergency medication to resuscitate him.
The youngster had surgery in October as part of a trial at Great Ormond Street Hospital in London and was fitted with the Picostim neurotransmitter.
The neurotransmitter emits a constant pulse of current, that aims to block or disrupt the abnormal signals, that trigger seizures.
Seizures happen when there are abnormal bursts of electrical activity in the brain.
Justine, told the BBC since he had the new device fitted, he was happier and had a “much better quality of life”.
Oran’s mum explained how his epilepsy dominated his life and said it had ‘robbed him of all of his childhood.’
Oran has autism and ADHD, but his mum says his epilepsy is by far the biggest hurdle.
Oran is part of the CADET project, external – a series of trials assessing the safety and effectiveness of deep brain stimulation for severe epilepsy.
Before the operation, Justine told us: “I want him to find some of himself again through the haze of seizures. I’d like to get my boy back.”
The operation 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 the lead placement was less than a millimetre.
The ends of the leads were connected to the neurostimulator, a 3.5cm square and 0.6cm thick device which was placed in a gap 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 were placed in the chest, with wires running up to the brain.
Martin Tisdall, lead surgeon 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.’
When it is on, Oran cannot feel it, and he can recharge the device every day via wireless headphones, while getting on with his life.
Martin added: ‘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.’
As part of the trial, three more children with Lennox-Gastaut syndrome will be fitted with the deep brain neurostimulator.
Justine said she was most excited about this next phase of the trial: ‘The Great Ormond Street team gave us hope back…now the future looks brighter.’
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