Surgery rids two-year-old Grace Stewart of epileptic seizures

Research gives hope to other children with seizure disorders

Grace Stewart of Fredericton, New Brunswick had her first epileptic seizure when she was a mere five weeks old. She would have 10,000 more seizures over the next two years, at times as many as 100 a day.

“When Grace was having a seizure, she would jerk, dip her head, rapidly blink her left eye and pull her left arm in, like a contraction. Sometimes she would double over with a groan,” recalls her mother, Sarah Smith-Stewart. “The repeated seizures weakened Grace’s left side and prevented her from growing and learning. At the age of 18 months she wasn’t walking or crawling, but scooting on her bottom, and she had very few words.”

Her doctors put Grace on every available epilepsy medication, but none controlled her seizures. The only thing that provided any relief was a special diet high in healthy fats and low in carbohydrates. Even so, her development continued to be impeded by as many as 30 seizures a day.

Now, at nearly three years old, Grace is walking with assistance, speaking in small sentences, and starting pre-school this fall, thanks to surgery she received at the IWK Health Centre in Halifax in December 2009. She hasn’t had a single seizure since. Dr. Paula Brna conducted detailed studies of Grace’s brain waves to find where the seizures were coming from, and Dr. Dan McNeely performed the delicate operation to remove a ‘tuber’ located in the right motor cortex of Grace’s brain. Tubers are like nests of inappropriately bundled neurons, found in a condition called ‘tuberous sclerosis,’ the most common genetic cause of epilepsy. Because Grace’s father Kayoe has this condition, her parents and physicians knew right away that tuberous sclerosis was at the root of her seizures.

“Fortunately for Grace and her family, her tuber was relatively easy to locate using MRI, which made it possible to consider removing it,” notes Dr. Michael Esser, a neurologist at the IWK who holds the William Dennis Chair in Epilepsy Research. “There may be other children with epilepsy who have smaller lesions in their brains which current imaging technology cannot find, so there is no way to safely remove them to stop the seizures.”

Dr. Esser is working with Dr. Ryan D’Arcy to launch a research program at the IWK to develop brain imaging methods capable of detecting smaller seizure-causing lesions. “With better imaging techniques, many more children can be helped the way Grace was,” says Dr. D’Arcy, a Dalhousie-affiliated brain imaging researcher who leads the National Research Council’s Institute for Biodiagnostics (Atlantic) and its two imaging facilities at the IWK. “Thanks to the Molly Neuroscience Training Program, we will be able to hire graduate students and postdoctoral fellows to help us advance this research.”