Neurofeedback trains brain to ease seizures in girl, now 8, with Dravet
In first reported use, treatment also seen to improve patient's sleep
Neurofeedback training — a way of training the brain to normalize its electrical signaling patterns — led to seizure reductions and sleep improvements for a young girl with Dravet syndrome.
That’s according to a new case study, which was the first to report the use of this approach — officially called infra-low frequency neurofeedback or ILF-NFT — in a person with the epilepsy disorder.
“Our results demonstrate that ILF-NFT has improved the patient’s sleep disturbance, has significantly reduced seizure frequency and severity, and has reversed neurodevelopmental decline, with positive development in intellectual and motor skills,” the researchers wrote.
“Thus, we draw attention to ILF-NFT as a promising intervention in addressing [Dravet syndrome] symptomatology,” they added.
The study, “Infra-low frequency neurofeedback training in Dravet syndrome: a case study,” was published in Epilepsy Behavior and Reports.
Neurofeedback training aims to train brain in self-regulating
In Dravet syndrome, nerve cells are too electrically active, meaning they’re primed to fire signals when they shouldn’t. These nerve calls also can be called hyperexcitable.
As a consequence, patients experience seizures as well as other symptoms, such as cognitive declines, behavioral disturbances, and sleep problems.
Neurofeedback training, or NFT, is a personalized approach that aims to essentially train the brain to change its electrical activity in ways that make it better at self-regulating and functioning optimally.
Essentially, NFT involves a software program creating an audio-visual representation of a person’s electrical brain activity, as captured by electroencephalogram (EEG).
The patient passively watches this video, which changes when the brain is firing in optimal ways compared with when it is firing in ways linked to abnormal behaviors. The visual associated with normal brain firing is more rewarding to brain cells, thus the brain learns from this feedback over time to adjust its patterns.
ILF-NFT is a form of NFT that specifically targets very low brain signaling frequencies.
Case reports and pilot studies over the last decades have touted the potential benefits of various forms of NFT for conditions such as treatment-resistant epilepsy, depression, and autism spectrum disorder.
In the new case report, the researchers described the first study of ILF-NFT in a person with Dravet syndrome.
The girl, now 8, had been diagnosed when she began to experience fever-induced seizures at 5 months old. Over the next several years, her seizures evolved such that they were not only caused by fever, but also physical activity or sensory stimulation.
She also experienced sleeping problems, and was awake for 2-4 hours of the night for five nights of every week. Her cognitive and motor skills gradually declined, and she experienced symptoms of irritability and problems with impulse control.
A number of different anti-seizure medications were tried, some of which led to significant side effects.
Father trained to administer neurofeedback training
The patient was started on ILF-NFT in December 2019. During treatment, she was hooked up to the EEG machine for 30 minutes per session, while she watched the screen and wore headphones. She continued to use her anti-seizure medications.
The overall goal of the girl’s particular neurofeedback regimen, given through July 2021, was to calm and stabilize certain frequencies of brain activity.
Her father was trained to administer the protocol, and the necessary equipment were set up in the girl’s home.
“The girl has, with few exceptions, been training daily ever since,” the researchers wrote.
After the first sessions in 2019, a marked improvement in the girl’s sleep was reported.
“Awakenings in the night hours are now both rare and significantly shorter,” the team wrote, noting the girl slept steadily from 7 p.m. to 6 a.m. most nights.
Her seizures also were stabilized until the summer of 2021, with episodes occurring once every 7-10 days, while also becoming shorter and less severe. She no longer required emergency treatment with diazepam, which had been causing side effects of lethargy.
After July 2o21, a new ILF-NFT protocol was introduced, which added a goal of calming impulse control problems associated with activity in the brain’s prefrontal cortex.
With this protocol, the child’s seizure frequency drastically decreased. At the time of the report, the girl had been seizure free for 23 weeks, or nearly six months. Even during a COVID-19 infection in January 2022, which was accompanied by a high fever, the girl did not have any seizures.
She now is able to attend school and has seen cognitive improvements — though she still is not meeting appropriate cognitive thresholds for her age. She also now has good motor function. No side effects have been observed.
“She is happy and with a positive attitude towards life,” the researchers wrote.
Further research is warranted to examine the effect of ILF-NFT in [Dravet syndrome] in more controlled clinical contexts.
The scientists did note that, if ILF-NFT is not used for a few days, the girl will begin to feel unwell, restless, and have sleeping problems, which will reverse after a single session.
While it is not clear what will happen in the long-term, “we anticipate that the application of ILF-NFT may be necessary in order to minimize her symptoms throughout her lifetime,” the team wrote.
All recorded benefits from the treatment were reported by the patient’s family, and not by objective measures, the authors noted as a study limitation.
“Further research is warranted to examine the effect of ILF-NFT in [Dravet syndrome] in more controlled clinical contexts,” the team concluded.