A nine-year-old Canadian girl with an autism spectrum disorder “surprised” her doctors and scientists after they managed to send electrical signals to her brain, which stopped her from causing severe harm to herself.
Eli Tomljanovic, who lives in Bari, Ont., Is the number one patient in the world’s first study to see if deep brain stimulation (DBS) can stop children who repeatedly try to injure themselves. Doctors estimate that up to 50% of children with ASD injure themselves, including hitting, biting and hitting others.
Ellie’s outbursts were devastatingly severe. Family videos shared with CTV News show her hitting her head with her hand, trying to swallow her fist, sticking her fingers in her nose to cause bleeding, along with vomiting and spitting. Her parents, Lisa and Jason, feared for her life.
“It got pretty bad. So Ellie eventually broke both her cheekbones. She also knocked out a tooth by biting the wall of the tub and knocking out one of her front teeth,” her mother said.
“I have a lot of bruises… so in SickKids both my hands were covered in bruises, bites on the side of my neck.”
They say they spend an exhausting eight to 10 hours a day trying to protect Ellie from herself.
“Our days almost put pressure on Ellie. That’s why we had to keep her down, her legs and arms, just so she wouldn’t get hurt,” Lisa said.
In rare cases, children who self-harm can cause brain injuries, blindness and even death. Doctors believe that some children are disappointed, especially those like Ellie who do not speak. Ellie was diagnosed with Pete-Hopkins syndrome, a rare genetic neurological disease that is part of the autism spectrum.
When sedatives and antipsychotics stopped working, Lisa and Jason found themselves in a time of crisis.
“It’s not sustainable,” her mother said. “We can’t keep her physically all day, all night, without sleeping.”
She was then taken to the Hospital for Sick Children, where Ellie was admitted.
It was a meeting with fate.
There, scientists were preparing a groundbreaking study, hoping to test electrical stimulation for children with autism and this severe and dangerous behavior. Ellie was the perfect candidate, says pediatric neurosurgeon Dr. George Ibrahim.
“We desperately wanted to give her an option. But we really didn’t know how much it would benefit, “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 amount of electric current to cancel circuits or regions in the brain that doctors believe are not working properly.
After exhausting the possibilities, her parents agreed that she would be their first patient.
“She can’t keep hurting all day. What does it look like when … she’s so big we can’t hold her?” said Lisa.
In December 2020, at the height of the pandemic, a team of doctors led by Ibrahim drilled two small holes in the upper part of Eli’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 part of her chest.
This powers an electrical signal that passes through 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 who is implanted with this technology, “said Ibrahim.
After a brief recovery after the procedure, doctors turned on Eli’s stimulant.
The results were immediate; self-harm behavior has disappeared. The video shows Ellie smiling, giving heels to her mother and happily watching TV.
“She was engaged … and she was laughing and clapping,” Lisa said. “We both cried. We both cried immediately. As soon as this device was turned on, she felt emotional.”
“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 would happen. The self-harm returned. And that fueled their determination to push the study forward.
“I thought it was something that could really offer kids without options some options,” he added.
The device is also a window into Ellie’s brain.
“We also constantly read neural information from her brain,” says neurologist Karolina Gorodetsky.
“It is definitely very clear that she is much happier after the device was turned on. And whether part of her personality is returning is a big question that is difficult to answer, “Gorodetsky said, adding that the test is not trying to change her autism, but just stop hurting her.
When CTV News visited the family home, it became clear that Ellie already had an agency over her world. She chases away the cameraman who was filming her while watching cartoons, and enters the living room to play with toys. Her mother is very happy.
“Before DBS, she couldn’t do that. She did not leave her room. He was lying in bed and all he did was hurt himself. She didn’t go anywhere. He didn’t do anything, “Lisa said.
The changes in the 18 months after the procedure were “crazy” and “life-changing”, her parents say.
Ellie responds to their requests and waits more patiently, instead of hurting herself as she used to. And they haven’t had to anesthetize her since the device was implanted.
“We have caregivers who don’t give up because they don’t get hurt. The school noticed a huge difference, “added Lisa.
Doctors are now looking for five more children with severe self-harm to test a brain simulation as part of a clinical trial observed by scientists around the world.
“Their job now is actually to establish both its safety and effectiveness to see if this is a viable long-term option,” said Dr. Evdokia Anagnostu, an autism specialist at Holland Bloorview in Toronto, who was also consulted by SickKids researchers. in process 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 it feels scary for parents, but many 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 big effects, we would change the way we see it, that parents would probably change the way they think about the potential benefits, ”says Anagnostu.
There are 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. This drains the battery, which is designed to last two years for other medical purposes, much faster. For the past year and a half, Ellie has had three small battery replacement surgeries every six months. She is leaving for her fourth deputy in September.
This is a problem her parents want to solve because they believe that Ellie’s pioneering case will offer hope to other parents struggling with these difficult-to-cope children.
“As scary as it is to have their brain pierced and this big piece hanging from their chest,” Lisa said, “it’s worth it.”
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