Ontario Autism Study: Deep brain stimulation and self-harm – Reuters News in France and abroad

A nine-year-old Canadian girl with autism has stunned her doctors and scientists after they managed to send electrical signals to her brain that prevented her from seriously injuring herself.

Eli Tomljanovic, who lives in Barrie, Ontario, is the first patient in a study that is the world’s first to see if deep brain stimulation (DBS) can prevent children who repeatedly try to harm themselves. Doctors estimate that up to 50% of children with autism spectrum disorder self-injure, including hitting, biting, and hitting others.

Ellie’s violent attacks were extremely dangerous. Home videos shared with CTV News show her hitting her head with her hand, trying to swallow her fist, and pushing her fingers into her nose to cause bleeding accompanied by vomiting and spitting up. His parents, Lisa and Jason, feared for his life.

“It went really badly. So Ellie ended up breaking her cheekbones. Her mother said she also broke one of her teeth, biting the edge of the bathtub and cracking one of her front teeth.”

“I have multiple bruises…so at SickKids my arms were covered in bruises and bite marks on the side of my neck.”

They say they spend 8-10 grueling hours a day trying to protect Ellie from herself.

“Our days were all about holding Ellie back. So we had to hold her, her legs and her arms, just so she wouldn’t hurt herself,” Lisa said.

In rare cases, children who self-injure can cause brain damage, blindness, and even death. Doctors believe this is how some children display frustration, especially those who don’t speak like Ellie. Eli was diagnosed with Pitt Hopkins syndrome, a rare genetic neurological disorder that is part of the autism spectrum.

When sedatives and antipsychotics stop working, Lisa and Jason find themselves in crisis.

“It’s not sustainable,” her mother said. “We can’t stand it physically all day, all night, without sleep.”

That’s when they took her to the Hospital for Sick Children, where Ellie was admitted.

It was a date with fate.

There, scientists were planning a groundbreaking study, hoping to test electrical stimulation of children with autism and this dangerous and dangerous behavior. Eli was an ideal candidate, says pediatric neurosurgeon Dr. George Ibrahim.

“We were desperate to give him a choice. But in terms of benefits, we didn’t really know,” he told CTV News in an exclusive interview.

Deep brain stimulation has been used for nearly two decades to treat depression, Parkinson’s disease in adults, and epilepsy in children. It uses a small electric current to replace circuits or areas in the brain that doctors think aren’t working properly

Her parents ran out of options and agreed that she would be their first patient.

“She can’t keep hurting herself all day. What does she look like when… she’s so big you can’t hold her?” says Lisa.

In December 2020, in the midst of an epidemic, a team of doctors led by Ibrahim drilled two small holes in the top of Eli’s skull and implanted two electrodes deep into her brain. They were then wired under the skin of his neck to a round silver battery implanted in the upper right side of his chest.

This gives an electrical signal that travels through wires in Eli’s brain.

“We can increase it and if there is an unexpected side effect, we can reduce it. So we are controlling the amount of electricity for each child implanted with this technology.

Shortly after recovering from the operation, the doctors turned on Ellie’s pacemaker.

The results were immediate. Self-injurious behaviors disappeared. The video shows Ellie smiling and saying hi to her mother and happily watching TV.

“She was engaged … and she was laughing and clapping,” Lisa said. “We both cried. We both cried right away. As soon as she turned on this device, she had a feeling.”

“It really surprised me,” Ibrahim said. “I think Eli’s initial response has been very encouraging.”

Ibrahim and the team also turned off the device to see what happens. Self-harm is back. This made them insist that they go ahead with the study.

“I thought it was something that could really give kids options without options,” he added.

The device is also a window into Ellie’s brain.

“We are constantly reading neural information from his brain,” says neurologist Carolina Gorodetsky.

“It’s very clear that she became much happier after turning on the device. If this is part of her personality coming back, that is a big question that is hard to answer,” Gorodetsky said, adding that the test is not trying to change her autism but just keep him from getting hurt.

When CTV News visited the family home, it’s clear that Ellie now has an agency in her world. She chases the photographer who is watching the cartoon and enters the living room to play with the toys. Her mother is happy.

“Before DBS, she couldn’t do that. She didn’t leave her room. She was lying in her bed and all she was doing was hurting herself. She wasn’t going anywhere,” Lisa said.

Her parents said the changes in the 18 months since the procedure were “crazy” and “life-changing.”

Ellie responds to their demands and waits more patiently, rather than hurting herself like she used to. And they haven’t had to put him to sleep since the device was implanted.

“We have caregivers who don’t quit, right, because they aren’t infected. The school noticed a huge difference,” adds Lisa.

Doctors are now looking for five other children with severe self-injury behaviors for a brain simulation test, in a clinical trial that has been monitored by scientists around the world.

Dr Evdokia Anagnostou, an autism specialist in the Netherlands, said: “Their task now is to demonstrate both safety and efficacy…to understand if this is a viable long-term option.” in the design of the experiment.

Some parents may be reluctant to have brain surgery. But she says the drugs have their risks, too.

“It’s surgery and anesthesia and it frightens parents, but a lot of the drugs that we use for their sometimes deadly efficacy have a lot of side effects. So if we had a procedure that’s relatively safe and has big effects, we’re going to change the way we see parents likely to change the way they think. out about the potential benefits,” says Anagnosto.

There were no serious side effects for Ellie. The only big challenge is the battery. Doctors say Elie needs higher doses of electrical stimulation to calm her behaviour. This drains the battery, which is designed to last two years for other medical uses, much faster. Ellie has had three minor surgeries in the past year and a half to replace batteries every six months. It will be replaced by the fourth in September.

It’s a problem her parents want to solve because they believe Ellie’s groundbreaking case will provide hope for other parents dealing with these hard-to-handle children.

“As frightening as it is to break into their brains and make that big dangling from their chest,” Lisa said, “It was worth it.”

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