Canadian girl with autism in world’s first test of how brain stimulation could stop serious self-harm

A nine-year-old Canadian girl with autism spectrum disorder has “shocked” her doctors and scientists after they were able to send electrical signals to her brain that prevented her from inflicting serious harm on herself.

Ellie Tomljanovic, who lives in Barrie, Ontario, is the number one patient in a world-first study to see if deep brain stimulation (DBS) can stop children from repeatedly trying to hurt themselves. Doctors estimate that up to 50% of children with ASD self-harm, including hitting themselves, biting, and hitting others.

Ellie’s violent outbursts were devastatingly severe. Family videos shared with CTV News show him hitting his head with his hand, trying to swallow her fist, sticking his fingers up his nose to cause bleeding along with vomiting and spitting. Her parents, Lisa and Jason, feared for her life.

“It got pretty bad. So Ellie ended up breaking both of her cheekbones. She also knocked out a tooth biting into the side of the tub and breaking one of her front teeth,” her mother said.

“I have multiple bruises…so in SickKids both of my arms were covered in bruises, bite marks along the side of my neck.”

They say they spent eight to 10 grueling hours a day trying to protect Ellie from herself.

“Our days were tight on Ellie. So we had to hold her down, her legs and her arms, just so she didn’t get hurt,” Lisa said.

In rare cases, children who self-harm can cause brain damage, blindness, and even death. Doctors believe it’s the way some children show frustration, especially those like Ellie, who are non-verbal. Ellie is diagnosed with Pitt-Hopkins syndrome, a rare genetic neurological disorder that is part of the autism spectrum.

When the sedatives and antipsychotics stopped working, Lisa and Jason found themselves in a moment of crisis.

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

That’s when she was taken to the Hospital for Sick Children, where Ellie was admitted.

It was a date with destiny.

There, scientists had been preparing a groundbreaking study hoping to test electrical stimulation for children with autism and this serious and dangerous behavior. Ellie was a perfect candidate, says pediatric neurosurgeon Dr. George Ibrahim.

“We were desperate to provide him with an option. But in terms of how much benefit it would provide, we really didn’t know,” he told CTV News in an exclusive interview.

DBS has been used for about two decades for depression and Parkinson’s disease in adults and epilepsy in children. It uses a small electrical current to override circuits or regions of the brain that doctors think are not working properly.

Having run out of options, her parents 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 we can’t hold her?” Lisa said.

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

That feeds an electrical signal that flows through the wires to Ellie’s brain.

“We can turn it up and if there’s an unforeseen side effect, we can turn it down. So we control the amount of electricity for each child who gets this technology implanted,” Ibrahim said.

After a brief recovery from the procedure, doctors turned on Ellie’s stimulator.

The results were immediate; self-injurious behaviors disappeared. The video shows Ellie smiling, giving her mom a high-five and happily watching TV.

“I was engaged…and laughing and clapping,” Lisa said. “We both cried. We both cried instantly. As soon as that device was turned on, she was emotional.”

“It really surprised me,” Ibrahim said. “I think the initial response Ellie had was very encouraging.”

Ibrahim and the team also turned off the device to see what happens. He returned the self-harm. And that has fueled his determination to push the study forward.

“I thought this is something that could really offer some options to kids without options,” he added.

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

“We are also continuously reading the neural information in your brain,” says neurologist Carolina Gorodetsky.

“It’s definitely very clear that she’s a lot happier after turning the device on. And if it’s part of her personality that’s coming back, that’s a big question that’s hard to answer,” Gorodetsky said, adding that the test didn’t is trying to change it. autism, but it just keeps her from hurting herself.

When CTV News visited the family home, it became clear that Ellie now has control over her world. She chases away the cameraman who is filming her watching cartoons and walks into the living room to play with toys. Her mother is delighted.

“Before DBS she couldn’t do that. She wouldn’t come out of her room. She lay in her bed and all she did was hurt herself. She didn’t go anywhere. She didn’t do anything,” Lisa said.

The changes in the 18 months since the procedure have been “crazy” and “life changing,” her parents say.

Ellie responds to his requests and waits more patiently, instead of hurting herself like before. And they haven’t had to sedate her since the device was implanted.

“We have caregivers who don’t give up because they don’t get hurt. The school has seen a big difference,” adds Lisa.

Doctors are now looking for five more children with severe self-injurious behavior to test the brain simulation, as part of a clinical trial watched by scientists around the world.

“Their job now is to establish both safety and efficacy … to understand if this is a viable long-term option,” said Dr. Evdokia Anagnostou, an autism specialist at Holland Bloorview in Toronto, who was also consulted by scientists. of SickKids in trial design.

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

“It’s surgery and anesthesia and parents scare them, but a lot of the drugs that we use to lethal efficacy sometimes have a lot of side effects. So if we had a procedure that was relatively safe and had big effects, we would change the way we see it.” parents would probably change their minds about the potential benefit,” says Anagnostou.

There have been no serious side effects for Ellie. The only big challenge is the battery. Doctors say Ellie needs higher doses of electrical stimulation to calm her behavior. That drains the battery, which was designed to last two years for other medical uses, much faster. Ellie has had three minor surgeries in the last year and a half to replace the batteries every six months. She is going for her fourth replacement in September.

It’s a problem her parents want to solve because they believe Ellie’s groundbreaking case will offer hope to other parents struggling with these difficult-to-manage children.

“As scary as it is to pierce through his brain and have this big piece hanging off his chest,” Lisa said, “it’s worth it.”

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