It started when Andi Dreher was only three years old. Her head slumped over, her face went blank. It was the first of many epileptic seizures that the Ontario child would endure.
At the beginning, Andi would have a couple of seizures a year, but the condition slowly progressed. By the time she turned seven, she was having up to 150 seizures a day.
Her family has come to call them “glitches.”
“The other day at school, she had 27 glitches in less than an hour,” her mom, Lori Dreher, said.
The seizures make it difficult for Andi to do even the simplest tasks, such as walking, talking and eating.
“She knows she used to play soccer and she used to do cheerleading — that she used to do these things and now she can’t. That’s hard.” her mom said.
Among serious neurological conditions in children, epilepsy is the most common. For most, the condition can be controlled by medications.
“But about one-third of children who have epilepsy don’t respond to medication. A subset of them can potentially be helped by a variety of surgical treatment,” said Dr. George Ibrahim, the pediatric neurosurgeon at the Hospital for Sick Children who operated on Andi.
When Andi and her family came from Kitchener to meet him last year, Ibrahim said he was struck by the severity of her case.
“Her brain is developed in a very unique way,” he said.
“She has a brain malformation that resulted in the seizures, and because the seizures had been going on for so long — and they were so frequent — other areas beyond the area that was abnormal, were generating seizures.
Before meeting Ibrahim, Andi and her family had already tried countless medications, had two surgical procedures, and even tested out the ketogenic diet — a high-fat, mid-protein, low-carbohydrate way of eating that’s sometimes used to try to control seizures in children with epilepsy.
“Everything helps in little bits and pieces, but not one thing has been able to fix her,” Lori Dreher said.
Running out of options, Ibrahim and his team decided they needed to try something different.
Believing deep brain stimulation (DBS) may be the answer, Ibrahim recruited colleague Dr. Suneil Kalia, a neurosurgeon at Toronto Western Hospital, to assist with the surgery.
Toronto Western performs the most deep brain stimulation procedures in Canada.
The procedure is commonly done on adults to treat movement disorders such as Parkinson’s, as well as epilepsy and chronic pain. It works by sending electrical impulses to targeted areas deep in the brain to relieve symptoms without harming the surrounding tissue.
Performing the procedure on a child, however, is rare — with only 40 known cases — and none in Canada.
That all changed on Oct. 1 this year when Andi made her way into the operating room, emerging about eight hours later with electrodes placed deep in her brain.
“The idea is that with electrical current flowing through those electrodes, we can alter the neural circuits — dial certain circuits up and dial certain circuits down. In Andi’s case, we wanted to decrease her seizure frequency, to decrease the excitability of the brain,” Ibrahim said.
For that to happen, the electrodes have to be connected to a battery-operated implant in Andi’s chest.
On Nov. 15, the implant was turned on.
Lori Dreher now has control of it, adjusting the levels on her programmed device to try to figure out what works best in minimizing her daughter’s seizures.
“For instance, last week we were on Level D and she was a zombie — no muscle control, no words … We changed back to Level B, and she was immediately able to say a few words and tell a sentence or two about her day. So based on that, we have hopes that this will work, once we tighten it in,” Dreher said.
‘She loves life’
Ibrahim said it will take time, but he, too, is hopeful.
“The true effects of the deep brain stimulation can only be known once the device has been turned on for several months. But when we turned it on as a test during surgery, it completely silenced the electrical activity that’s causing Andi’s seizures, which is what we were hoping to target.”
As for Andi, Lori said her daughter was actually excited going into surgery, because she knew it may be the answer to stopping her “glitches.”
“She has such perseverance and determination to be like everybody else and to do what her brothers and sisters are doing,” she said.
“She’s an extremely resilient young girl. She has a very severe form of epilepsy and despite that, she loves life.”