Ellie Tomljanovic, who lives in Barrie, OD, is the number one patient in a world first study to see if deep brain stimulation (DBS) can stop children who repeatedly try to hurt themselves. Doctors estimate that up to 50% of children with ASD self-injure, including self-injury, biting and punching. Eli’s violent outbursts were catastrophic. Family videos posted on CTV News show her banging her head with her hand, trying to swallow her fist, raising her fingers to her nose to cause bleeding along with vomiting and spitting. Her parents, Lisa and Jason, feared for her life. “It went very badly. So Eli ended up breaking both of her cheekbones. She also pulled out a tooth by biting the side of the bathtub and pulled out one of her front teeth,” said her mother. “I have a lot of bruises; so at SickKids both my hands were covered with bruises, bites on the side of my neck.” They say they spent an exhausting eight to 10 hours a day trying to protect Eli from herself. “Our days kept Eli down for a while. 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 that is the way some children show frustration, especially those like Ellie who are non-verbal. Eli is diagnosed with Pitt-Hopkins Syndrome, a rare genetic neurological disorder that belongs to the autism spectrum. When sedatives and antipsychotics stopped working, Lisa and Jason found themselves in a time of crisis. “It is not sustainable,” said her mother. “We can not keep her physically down all day, all night, not sleeping.” It was then that she was taken to The Hospital for Sick Children, where Ellie was admitted. It was an appointment with fate. There, scientists were preparing a groundbreaking study, hoping to test electrical stimulation in 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 her a choice. But as for how much she would benefit, we really did not know,” she 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. Uses a small electrical current to bypass circuits or areas in the brain that doctors believe are not working properly Having run out of options, her parents agreed that she would be their first patient. “She can not continue to injure herself all day. How is it when …. she is so big that we can not hold her down?” said Lisa. In December 2020, amid 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 deep into her brain. They were then connected with wires under the skin of her neck to a round silver battery that was implanted in the upper right side of her chest. This feeds an electrical signal that flows through the wires to Ellie’s brain. “We can turn it on and if there is an unpredictable side effect, we can call it that. So we control the amount of electricity for each child implanted with this technology,” Ibrahim said. After a brief recovery from the procedure, the doctors opened Ellie’s stimulant. The results were immediate. the self-injurious behaviors were gone. The video shows Ellie smiling, disapproving of her mother and watching happy TV. “She was engaged … and she was laughing and applauding,” Lisa said. “We both cried. We both cried right away. As soon as this device was turned on, it was moving.” “It really surprised me,” Ibrahim said. “I think Eli’s initial response was very encouraging.” Ibrahim and the team have also turned off the device to see what is happening. The self-injury returned. And that fueled their determination to advance the study. “I thought this was something that could really offer children some options without options,” he added. The device is also a window into Ellie’s brain. “We also constantly read neural information from her brain,” says neurologist Carolina Gorodetsky. “It is definitely very clear that she is much happier after activating the device. And if it is part of her personality that returns, this is a big question that is difficult to answer,” said Gorodetsky, adding that the test does not try to change. autism but just stop her from injuring herself. When CTV News visited the family home, it is clear that Ellie now has an agency in her world. She chases away the cameraman who was filming her watching movies and enters the living room to play with the toys. Her mother is very happy. “Before DBS she could not do that. She did not leave her room. She lay on her bed and all she did was hurt herself. She did not go anywhere. She did nothing,” Lisa said. The changes in the 18 months of the procedure were “crazy” and “life changing”, her parents say. Elli responds to their requests and waits more patiently, instead of hurting herself as she did before. And she has not had to be drugged since the device was implanted. “We have carers who do not give up, right, because they do not get hurt. 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 as part of a clinical trial being looked at by scientists around the world. “Their job now is to consolidate both safety and effectiveness; to see if this is a viable long-term option,” she said. Eudokia Anagnostou, autism specialist at Holland Bloorview in Toronto, who was also consulted by SickKids scientists. trial planning. Some parents may be reluctant to resort to brain surgery. But he says drugs also have their risks. “It’s surgery and anesthesia and it’s scary for 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 results, we would change the way. “Parents would probably change the way they think about the potential benefit,” says Anagnostou. There were no serious side effects for Ellie. The only big challenge is the battery. Doctors say Eli 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 is going for her fourth replacement in September. It is a problem that her parents want to solve because they believe that Eli’s pioneering case will offer hope to other parents who are struggling with these difficult children. “As scary as it is to pierce their brains and hang this big piece from their chests,” Lisa said, “it’s worth it.”
