The seizures started when Andi Dreher was three years old. Every six months or so, in quick succession, she’d have two or three grand mal seizures — the muscle-contracting kind we often imagine when someone says “seizure.”
Still, her mother Lori Dreher told reporters Wednesday, the doctors would adjust her medications and Andi would keep being a determined little kid. She walked, she ran, she played with her friends.
When Andi turned seven, the seizures changed. This time, Dreher said, she would have hundreds of little seizures every day, “glitches” her family calls them. Andi’s head jerks back and then falls to the side. Sometimes she knows it’s happened, her mother said, while other times she’s only aware if she falls and hurts herself.
Andi can’t walk without help and she’ll sometimes go long stretches without talking.
“She can’t really do anything by herself,” Dreher said.
“She knows she used to play soccer, that she used to do cheerleading, that she used to do these things and she can’t. That’s hard.”
Doctors ran through the list of possible treatments: this medication then that one, they tried a craniotomy to remove the malformed part of Andi’s brain causing the seizures but stopped because the veins were just too twisted and the risk too high.
WATCH: Andi Dreher has hundreds of seizures every day. Now her family says they’re hopeful deep brain stimulation is the answer they’ve been searching for.
After, they tried vagus nerve stimulation — a “pacemaker for the brain” that sends electrical pulses to the brain through the vagus nerve. Nothing made a lasting impact.
Low on options, Andi’s doctors decided to try something new and on Oct. 1, Andi, now 9, became the first Canadian child to undergo deep brain stimulation to treat drug-resistant epilepsy.
Although a common procedure for adults, said Dr. George Ibrahim, neurosurgeon at SickKids, there have been only 40 published cases of the procedure being done successfully on children around the world.
“We wanted to offer her a treatment that we felt can give her the best chance,” Ibrahim said. “She reached a point where she had very few options left.”
Most children who have epilepsy will see some improvement from oral medications, he said, but one-third will not. That minority relies on surgical interventions, the kind that Andi already unsuccessfully tried.
Deep brain stimulation involves the careful placement of electrodes at spots within the brain. Tiny wires tunnel under her skin, connecting the electrodes in her brain with a battery-operated device in the chest that’s similar to a pacemaker.
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Dreher, under the direction of Andi’s team of health-care providers, can then adjust the stimulation levels to see what makes the most impact.
The trickiest part, Ibrahim said, is really the planning ahead of surgery.
“We spent hours and hours planning exactly where the electrodes will go and how to get them there in the safest possible way,” he said.
“You have to plan these electrodes to get to their target with submillimetre accuracy.”
Neurosurgeons from both SickKids and Toronto Western Hospital were called in to help, Ibrahim said, and the team consulted with other experts who have performed the procedure on children outside of the country.
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All that planning was the scariest part, Dreher said. She worried about the malformation in her daughter’s brain and the precision required to make sure the surgeons didn’t accidentally burst a vessel in Andi’s brain.
Still, she said, her daughter is one of four kids. She wants to sleep on a bunk bed like her siblings, she wants to play with her friends, hold a cup of water without help, go to the bathroom without someone hovering nearby.
“We just kind of had faith,” Dreher said. “The unknown is what toll is 150 glitches taking on her in the day? She can’t maintain that for the long term.”
It’s a big concern, Ibrahim said.
Mortality rates for children with epilepsy are much higher than those without it, he noted.
“They have a medical disability, they have social isolation,” he said.
“For a nine-year-old child who has over 100 seizures a day, it’s very difficult to do the things that children should be doing: it’s very difficult to play, it’s very difficult to learn.”
Ibrahim is hopeful that Andi’s successful operation will pave the way for more children in Canada with drug-resistant epilepsy to undergo the operation as well. However, it’s too soon to say what the impact will be for Andi.
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The electrodes have only been turned on for the last few weeks and doctors aren’t expecting to see a full impact for several months.
Dreher, however, is heartened by Andi’s early reactions as they adjust the stimulation levels. When Andi was at one level for a few days, she was “a zombie,” her mother said, but started talking again barely minutes after being switched to another level.
“We’ve got to be hopeful because we’re running out of options.”