The nine-year-old Canadian girl with Autism Spectrum Disorder has ‘surprised’ her doctors and scientists when they were able to send electrical signals to her brain that prevented her from seriously injuring 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 from repeatedly trying to harm themselves. Physicians estimate that up to 50% of children with ASD commit suicide, including biting, biting, and injuring others.
Eli’s violent explosions were devastatingly serious. Home videos shared with CTV News show her hitting her head with her hand, trying to swallow her fist, pushing a finger into her nose, and vomiting and spitting blood. Her parents, Lisa and Jason, feared for their lives.
“It went badly. So Eli broke both his cheekbones. He also broke a tooth by biting the rim of the bathtub and broke one of the front teeth,” his mother said.
“I have multiple wounds… so in Sickkids both my hands were covered with wounds, and there were bite marks on the side of my neck. A
They say they spent 8-10 hard hours a day trying to protect Eli from themselves.
“It simply came to our notice then. So we had to hold her, her legs and her arms so she wouldn’t hurt herself, “said Lisa.
In rare cases, children who self-harm can suffer brain damage, blindness and even death. Doctors believe that in this way some children show frustration, especially those like Eli who are speechless. Eli has been diagnosed with Pitt-Hopkins Syndrome, a rare genetic neurological disorder that is part of the autism spectrum.
When sedatives and antipsychotics stop working, Lisa and Jason find themselves in crisis.
“It’s not sustainable,” his mother said. “We can’t physically maintain it all day, all night, without sleep.”
They then took her to a sick children’s hospital, where Eli was admitted.
It was a date with luck.
There, scientists were planning a groundbreaking study, hoping to test electrical stimulation for children with autism and this serious and dangerous behavior. Eli was a perfect candidate, says pediatric neurosurgeon Dr. George Ibrahim.
“We were desperate to give him a choice. But in terms of benefits, we didn’t really know, “he told CTV News in an exclusive interview.
DBS has been used for almost two decades for depression and Parkinson’s disease in adults and epilepsy in children. It uses a small electric current to replace circuits or brain areas that doctors say is not working properly.
With the options running out, her parents agreed that she would be their first patient.
“She can’t hurt herself all day. How does it feel when … it’s so big you can’t hold it?” Said Lisa.
In December 2020, during the epidemic, a team of doctors led by Ibrahim drilled two small holes in the top of Eli’s skull and inserted two electrodes that went deep into his brain. They were then attached to a circular silver battery attached to the wire under the skin of his neck and attached to the upper right of his chest.
It energizes an electrical signal that travels through the wire to Eli’s brain.
“We can increase it and if there is an unexpected side effect we can reduce it. So we control the amount of electricity for each baby that is replaced by this technology,” said Ibrahim.
After a brief recovery from the procedure, doctors turned on Eli’s pacemaker.
The results were immediate; Self-harm behavior is gone. The video shows Eli smiling, saying hello to his mother and watching TV happily.
“He got engaged … and smiled and clapped,” Lisa said. “We both cried. We both cried right away. He had his passion as soon as this device was launched. A
“It really surprised me,” Ibrahim said. “I think Eli’s initial reaction was very encouraging. A
Ibrahim and the team also turned off the device to see what was happening. Self-harm returns. And it encouraged their determination to move the study forward.
“I thought it was something that could really give kids a choice,” he added.
The device is also a window into Eli’s brain.
“We also constantly read neural information from his brain,” said neurologist Carolina Gorodetsky.
“It simply came to our notice then. And if it comes back to being part of his personality, it’s a big question that is hard to answer, “said Gorodetsky, adding that the test was not trying to change him.
When CTV News visited the family home, it was clear that Eli now had an agency in his world. She chases the cameraman who is watching her cartoons and enters the living room to play with toys. Her mother is happy.
“Before DBS, he couldn’t do that. He did not leave his house. She was lying in her bed and what she was doing was hurting herself. He was not going anywhere. He’s not doing anything, ”Lisa said.
In the 18 months since the procedure, the changes have been “insane” and “life-changing,” her parents said.
Eli responds to their demands and waits patiently instead of hurting himself as before. And they haven’t had him sleep since the device was installed.
“We have carers who do not give up, not because they were not injured. The school has noticed a huge difference, “Lisa added.
In a clinical trial conducted by scientists around the world, doctors are now looking for five more babies with severe self-harm behaviors to test brain simulations.
“Their job now is to establish both safety and effectiveness … to see if this is an effective long-term option,” said Dr. Evdokia Anagnostu, a Dutch autism specialist. Judgment design.
Some parents may be reluctant to have brain surgery. But he says drugs also have their risks.
“It simply came to our notice then. So if we had a system that was relatively safe and had a significant impact, the way we see it would change the way parents think about the potential benefits, “said Anagnostu.
There were no serious side effects for Ellie. The only big challenge is the battery. Doctors say Eli needs high levels of electrical stimulation to calm his behavior. It drains the battery, which was designed to last two years for other medical uses, much faster. Eli has had three minor surgeries in the last year and a half to replace the battery every six months. He will go for his fourth transfer in September.
This is a problem that her parents want to solve because they believe that Eli’s pioneering case will give hope to other parents working with these difficult children.
“It’s as scary as getting into their brains and hanging that big part from their chest,” Lisa said. “It’s worth it.”