A young boy with severe epilepsy has become the first patient in the world to trial a new device to control seizures. The neurostimulator device has been implanted in Oran Knowlson’s skull and sends electrical signals deep into his brain.
The surgery, which Oran underwent when he was just 12 years old, has reduced his daytime seizures by 80 per cent. His mother, Justine, told the BBC how much happier the 13-year-old is now with his “better quality of life”.
Oran has Lennox-Gastaut syndrome, a type of epilepsy that is known to be particularly resistant to other treatments. He developed the disorder at the age of three and has suffered several seizures every day since.
The surgery was carried out in October as part of a trial at Great Ormond Street Hospital in London. Just before his surgery Justine had complained to the outlet how Oran’s epilepsy had “robbed him of all of his childhood”.
She explained that the preteen experiences a range of different seizures and would sometimes need emergency medication to resuscitate him as he stopped breathing. The 13-year-old also has autism and ADHD.
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But his mum declared his epilepsy has been the biggest hindrance to his daily life. She said he went from a “fairly bright three-year-old” to quickly deteriorating and losing a lot of his skills within just a few months.
The Picostim neurotransmitter in Oran’s skull emits a pulse of current that blocks or disrupts the abnormal electrical activity in the brain that triggers seizures. He cannot feel the transmitter when it is on and can easily recharge it everyday with wireless headphones while doing other things like watching TV.
Seven months post-op, Justine noted that her son is more alert, has no drop seizures during the day as well as “shorter and less severe” seizures during the night. That marks a massive improvement.
While Oran and his family are under no illusion that this is a cure-all for his condition, Justine praised the Great Ormond Street team for giving them “hope”. She says “the future looks brighter”.
Going forward, the trial will see three more children with Lennox-Gastaut syndrome fitted with the deep brain neurostimulator. The team plan to make the device able to respond in real-time to changes in brain activity to block seizures as they’re about to happen.
The teen is part of the CADET project. This is a series of trials assessing the safety and effectiveness of deep brain stimulation for severe epilepsy, that involves Great Ormond Street Hospital, University College London, King’s College Hospital and the University of Oxford.
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