A nine-year-old Canadian girl with autism spectrum disorder has “surprised” her doctors and scientists after they were able to send electrical signals to her brain that prevented her from being seriously injured.
Ellie Tomljanovic, who lives in Barrie, Ontario, is the number one patient in a global 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, biting, and hitting others.
Ellie’s violent 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 their lives.
“She got pretty bad. So Ellie ended up fracturing both cheekbones. She also broke a tooth biting the side of the tub and pulled out one of her front teeth,” her mother said.
“I have multiple bruises … so at SickKids both arms were covered in bruises, stung to the side of the neck.”
They say they spend between eight and ten hours a day trying to protect Ellie from herself.
“Our days were almost holding Ellie. So we had to hold her, her legs and arms, just so she wouldn’t get hurt,” Lisa said.
In rare cases, children who injure themselves can cause brain damage, blindness, and even death. Doctors think this is how some children show frustration, especially those like Ellie who are not verbal. Ellie is diagnosed with Pitt-Hopkins Syndrome, a rare genetic neurological disorder 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,” his mother said. “We can’t physically endure it all day, all night, without sleeping.”
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 an innovative study, hoping to test electrical stimulation for children with autism and this serious and dangerous behavior. Ellie was a perfect candidate, says Dr. George Ibrahim, a pediatric neurosurgeon.
“We were desperate to offer him a choice. But as for the benefit it would bring, 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 electric current to cancel out circuits or regions of the brain that doctors think are not working properly.
After running out of options, her parents agreed that she would be their first patient.
“She can’t keep getting hurt all day. What do you look like when … she’s so big we can’t stand her?” said Lisa.
In December 2020, in the midst of a pandemic, a team of doctors led by Ibrahim drilled two small holes in the top of Ellie’s skull and implanted two electrodes that went into the depths of her brain. They were then wired under the skin of the neck to a round silver battery implanted in the upper right of the chest.
This feeds an electrical signal that flows through the wires to 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 that has been implemented with this technology,” Ibrahim said.
After a brief recovery from the procedure, doctors activated Ellie’s stimulator.
The results were immediate; self-injurious behaviors disappeared. The video shows Ellie smiling, slapping her mother five times and happily watching TV.
“She was engaged … and laughing and clapping,” Lisa said. “We both cried. We both cried instantly. As soon as the device turned on, he was excited.”
“I was very surprised,” Ibrahim said. “I think Ellie’s initial response was very encouraging.”
Ibrahim and the team also turned off the device to see what was going on. Self-harm returned. And that has fueled his decision to move the study forward.
“I thought this is something that could really offer some options to kids with no options,” he added.
The device is also a window into Ellie’s brain.
“We’re also constantly reading the neural information in your brain,” says neurologist Carolina Gorodetsky.
“It’s definitely clear that he’s much happier after turning on the device. And if it’s part of his personality that’s coming back, that’s a big question that’s hard to answer,” Gorodetsky said, adding that the test does not attempt to change it. autism, but only prevents it from getting hurt.
When CTV News visited the family home, it is clear that Ellie now has agency on her world. He pulls away the camera filming her looking at cartoons and enters the living room to play with the toys. Her mother is very happy.
“Before DBS he couldn’t do that. He didn’t get out of his room. He lay in bed and all he did was hurt himself. He didn’t go anywhere. He 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 as she did before. And they haven’t had to sedate him since the device was introduced.
“We have caregivers who don’t stop smoking, do they, because they don’t hurt them. The school has noticed a big difference,” adds Lisa.
Doctors are now looking for five more children with severe self-harm behaviors to test for brain simulation, as part of a clinical trial being overseen by scientists around the world.
“Her 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. consulted by SickKids scientists in the design of the trial.
Some parents may be reluctant to resort to brain surgery. But he says drugs also have their risks.
“It’s a surgery and anesthesia and it scares the parents, but a lot of the drugs we use for lethal effectiveness sometimes have a lot of side effects. So if we had a procedure that was relatively safe and had great effects, we’d change the way we see it. parents would probably change their mindset about the potential benefit, “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 depletes 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. He will look for his 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 struggling with these hard-to-handle children.
“It’s so scary to pierce your brain and have this big piece hanging from your chest,” Lisa said, “it’s worth it.”