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A boy with epilepsy who would have up to six seizures every 10 seconds ended up being seizure free for seven years after undergoing new treatment using electrical brain stimulation.
Danny Dyer, who lives in Dartford, started suffering with severe infantile spasms when he was just eight months old, and his seizures worsened with age.
His mum Jane said: “Medications never seemed to prevent the seizures but the side effects caused by the multiple combinations of drugs suppressed his personality and changed him drastically.
“Danny’s brain was unable to develop as it should have.”
As a last effort to bring the seizures to a halt and give him some quality of life a doctor offered to attempt open brain surgery to try to remove the part of his brain that was malfunctioning.
She continued: “The day we agreed to allow Dr Valentin to carry out his stimulation technique on our son was the day that changed his life, he remained seizure free for seven years. Those seven years allowed him to learn, grow and progress in to the remarkable young man he is today.”
His dad Jon said: “At that time, the situation was so bleak , his condition was declining and he was suffering six seizures every ten seconds so his brain was pretty much shut down most of the time and unable to develop in the way that it could.
“So it was the last opportunity to try and get a better situation and we didn’t have a lot to lose at that point.
“It was meant to be a 10 hour procedure but after two hours the doctor was confident that he couldn’t do the operation and that the area was so grossly abnormal that it was too big of a part of the brain to try and remove to solve the problem.
“It was at this point that Dr Valentin, who was present at the operation, to this day we see it as a gift from God that he was there, he asked us if we would agree to allow him to stimulate Danny’s brain whilst his head was open in an attempt to try and see if there was anything that would change from this procedure.
“I’ve never heard anything about stimulation and looking back I’m amazed we agreed to it but at the time it just felt like we had to.”
Ten days after having treatment, Danny stopped having seizures. The family were told they may return within 10 days, but they didn’t end up coming back for seven years.
Jon said they came back in “quite a violent form” but medication worked first-time and the now 16-year-old is doing “really well”.
“Stimulation treatment saved Danny’s situation and it changed his life forever.
“If that hadn’t worked for Danny at that stage of his life he would not have been able to develop into the capable boy and young man that he now is.
“It’s affected his life massively and it still does to a degree, but the fact that he got those seven years of development, life, learning and playing is such a blessing for us.”
Researchers at King’s College London developed the new diagnostic approach which can significantly reduce the number of seizures in young people with focal epilepsy, with some people becoming seizure free.
The researchers used deep brain and sub cortical stimulation, where parts of the brain are stimulated by electrodes placed under the skull, over defined periods of time.
The aim is to determine where seizures are occurring in the brain, and to remove this part of the brain.
The new approach, which is supported by funding from Action Medical Research and Great Ormond Street Hospital, has been successfully used to help 12 children with severe epilepsy at two different hospitals in UK.
The results exceeded the researchers hopes as they found that sub cortical stimulation, which was being used as diagnostic tool in this study, significantly reduced seizures from short to very long periods of time in children and adults.
Dr Antonio Valentin, the lead researcher from King’s College London said: “Initially we thought that subacute cortical stimulation could only be used to help direct surgery in drug resistant epilepsy, but the results of the research exceeded our expectations.
“We’ve since been able to use the technique to guide other potential treatments for some children with epilepsy.
“Our most impressive result is that three children at King’s College Hospital and Alder Hey Children’s Hospital who were using wheelchairs due to continuous seizures affecting their legs were able to walk again after trying our technique.”