Ontario autism study: deep brain stimulation and self-harm – Reuters

A nine-year-old Canadian girl with autism spectrum disorder has ‘astonished’ her doctors and scientists after they were able to send electrical signals to her brain that stopped her from inflicting serious injury on herself.

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

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

“It went pretty badly. So Ellie ended up fracturing both cheekbones. She also broke a tooth biting the rim of the bathtub and broke a front tooth,” her mother said.

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

They say they spent 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-harm can cause brain damage, blindness and even death. Doctors believe this is how 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 crisis.

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

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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 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 give him an option. But in terms of benefits, 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 replace circuits or areas of the brain that doctors say aren’t working properly

Running out of options, her parents agreed that she would be their first patient.

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

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

This powers an electrical signal that travels through the wires in Ellie’s brain.

“We can increase it and if there is an unforeseen side effect, we can reduce it. So we control the amount of electricity for each child implanted with this technology,” Ibrahim said.

After a short recovery from the procedure, doctors turned on Ellie’s pacemaker.

The results were immediate; the self-injurious behaviors were gone. The video shows Ellie smiling, saying hello to her mother and watching TV happily.

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“She was engaged … and was laughing and clapping,” Lisa said. “We both cried. We both cried instantly. As soon as this device was turned on, she had emotion. »

“It really amazed me,” Ibrahim said. “I think Ellie’s initial response was very encouraging. »

Ibrahim and the team also turned off the device to see what’s going on. The self-harm returned. And that fueled their determination to move the study forward.

“I thought it was something that could really give options to kids with no options,” he added.

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

“We also continuously read neural information from his brain,” says neurologist Carolina Gorodetsky.

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

When CTV News visited the family’s home, it’s clear that Ellie now has agency on her world. She chases away the cameraman who is filming her watching cartoons and enters the living room to play with toys. Her mother is delighted.

“Before DBS, she couldn’t do that. She did not leave her room. She was lying in her bed and all she was doing was hurting herself. She wasn’t going anywhere. She was doing nothing,” Lisa said.

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

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

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“We have carers who don’t quit, don’t we, because they’re not injured. The school has noticed a huge difference,” adds Lisa.

Doctors are now looking for five more children with severe self-harming behaviors to test the brain simulation, in a clinical trial monitored by scientists around the world.

“Their job is now 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, which was also consulted by SickKids scientists in designing the trial.

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

“It’s surgery and anesthesia and it scares the parents, but a lot of the drugs that we use for their deadly effectiveness sometimes have a lot of side effects. So if we had a procedure that was relatively safe and produced significant effects, we would change the way we see parents would likely change the way they think about potential benefits,” says Anagnostou.

There were 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 behaviors. This 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 will go for her fourth replacement in September.

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

“As scary as it is to break into their brains and have that big chunk hanging from their chest,” Lisa said, “it’s worth it. »

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