Experimental brain test on Canadian girl with autism stuns researchers trying to prevent serious self-harm

Experimental brain test on Canadian girl with autism stuns researchers trying to prevent serious self-harm

Experimental brain test on Canadian girl with autism stuns researchers trying to prevent serious self-harm

The preliminary results of an experiment involving a Canadian girl diagnosed with a rare form of autism spectrum disorder have baffled researchers after being able to send electrical signals deep into her brain and prevent the 9-year-old from seriously self-harming herself.

Ellie Tomjanovic lives in the town of Barrie in southern Ontario, about 100 km from SickKids Hospital in Toronto, where she received experimental deep brain stimulation (DBS) treatment for her self-injury in December 2020.

Ellie, who was diagnosed with the rare genetic neurological disorder Pitt-Hopkins syndrome when she was a child, had had violent outbursts for years, including banging, biting and even trying to swallow her hands. At one point, her parents told CTV News that they feared for their young daughter’s life.

“It got pretty bad,” Lisa Tomjanovic told CTV News in their first sit-down interview since the proceedings took place more than 18 months ago. In video footage shared to the news station, Ellie can be found scurrying around in her car seat and biting at hospital staff as they try to stop her from hurting herself. “Ellie ended up breaking both of her cheekbones,” the mother told CTV, adding that she had also suffered injuries that knocked her teeth out, and even sustained injuries of her own when she tried to intervene.

“Both arms were bruised, bites down the side of my neck.”

Self-injurious behavior can be a side effect of children and adults who have been diagnosed with ASD, although it may be more common in some syndromes than others, such as Ellie.

Jason Tomljanovic and Lisa Tomljanovic, parents of 9-year-old Ellie, say deep brain stimulation treatment was ‘life-changing’ for their daughter

(CTV news/video screen grab)

According to a study published in the Journals of the American Medical Association, a meta-analysis found that the risk of self-harm was three times greater than in people without ASD. And in children, the Journal of Autism and Developmental Disabilities found in a study that nearly 28 percent of 8-year-old children with ASD may behave in ways that could lead to self-injury, with specific behaviors such as head banging, arm biting, and skin scratching being more common in children with ASD.

Doctors believe that some children’s violent outbursts may be a way to express frustration, especially for children who may not speak. For Ellie’s parents, they decided to look for alternative forms of treatment after discovering that their current refuge proved untenable.

“Our days kind of held back Ellie,” Ms Tomjanovic said, confessing that a full workday — eight to ten hours — could easily be spent trying to prevent their 9-year-old from harming herself.

“We can’t physically hold her all day,” she added. After sedatives and antipsychotics stopped working, they pinned their hopes on an experimental treatment offered at the Hospital for Sick Children in Toronto with pediatric neurosurgeon Dr. George Ibrahim.

During the appointment, Dr. Ibrahim explained how they started a first-of-its-kind experiment in the hospital called deep brain stimulation (DBS) to treat children diagnosed with ASD who were suffering from life-threatening self-injurious behavior.

Ellie Tomljanovic, 9, is one of the first patients in a study to see if deep brain stimulation (DBS) can stop kids from repeatedly trying to hurt themselves

(CTV News/video screen grab)

The parents, who were out of options, wholeheartedly agreed to the procedure. In December 2020, Ellie had two electrodes implanted deep in her brain, with wires running through her neck to her chest, where a battery was also added.

The electrical nodes send an electrical current deep into Ellie’s brain, in a manner similar to the electroshock therapy that has been shown to be successful in relieving symptoms in people diagnosed with chronic depression who otherwise failed to respond to therapy and medications.

The American Association of Neurological Surgeons describes DBS as safe and effective when candidates for surgery are properly selected. They add that “risks and potential side effects exist, but they are generally mild and reversible” and these can carry a one percent risk of brain haemorrhage, infection, device malfunction, headaches, and in some cases a deterioration in mental or emotional state. include. † During stimulation, patients may experience tingling, a feeling of muscle being pulled, speech/vision problems or loss of balance.

dr. Ibrahim explained in an interview with the news outlet that the device can be modified so that they can measure what specific amount of electrical current Ellie responds to best. Shortly after the first of its kind procedure, Dr. Ibrahim said the results have been “very encouraging”.

“It really surprised me,” he said, telling Ellie’s mother at home, the implications of the surgery were felt immediately. “She was engaged…and laughed and clapped,” Ms Tomjanovic said.

The Ontario experiment’s findings mirror the results of previous studies looking at the relationship between DBS and self-harm in children diagnosed with ASD.

In 2013, researchers published the results of an experiment involving a 13-year-old boy diagnosed with life-threatening self-injurious behavior (SIB) and severe Kanner autism and how he responded to DBS. During that study, researchers made initial conclusions that the treatment was “effective” and elicited no negative side effects, but recommended more research to support their findings.

More recently, a systematic review of the procedure was published in September 2022 in Interdisciplinary neurosurgery† The analysis, which looked at seven published papers on patients undergoing DBS for ASD accompanied by life-threatening self-injurious behaviors, showed that stimulating the brain in this way could be effective for “severe, medically refractory symptoms in children and adults with autism spectrum”. disorders”.

Ellie’s results not only reflect previous findings, but also pave the way for more research to expand on the positive response she’s had to undergoing DBS to treat her self-harming behaviors.

dr. Ibrahim and doctors at the Hospital for Sick Children are now opening their clinical trial with five more children diagnosed with severe self-injurious behavior to further test the efficacy of deep brain stimulation.

“Their job now is to actually establish both safety and effectiveness… to understand if this is a viable long-term option,” said Dr. Evdokia Anagnostou, an autism specialist who was also consulted by SickKids in the study. trial design, in an interview with CTV.

Some parents, such as the Tomjanovics, were skeptical of the procedure, especially given the risks associated with putting your child under anesthesia during surgery.

and dr. Anagnostou admitted those risks are worth calibrating when deciding whether an invasive procedure like brain surgery is worth it for a family, while also admitting that medications have side effects of their own.

“A lot of the drugs we use for lethal efficacy sometimes have a lot of side effects. So if we had a procedure that was relatively safe and had great effects…parents would probably change how they think about the potential benefit,” Dr. Anagnostou told me. to the news channel.

Ellie has had three minor surgeries so far to replace the battery that powers the electrodes, which is located in the 9-year-old’s right upper chest. She is due to have surgery in September for her next replacement surgery, as the battery needs to be replaced every six months.

As of June 2022, Ellie had no serious side effects, according to the news channel. And her parents continue to praise the procedure.

“As scary as it is to drill into their brains and have this big chunk hanging out of their chests,” Ellie’s mom told CTV, “it’s worth it.”