An epilepsy diagnosis means fear and worry for parents

Epilepsy is the most common neurological condition and affects 50 million people around the world — 350,000 are Canadians

Maja Begovic 4 minute read February 7, 2020

Tobin started blanking out in kindergarten class. Initially dismissed as daydreaming, these episodes became more frequent throughout the day.

When he froze mid-stride behind a car that was backing up, his mother knew something was wrong.

Tobin was diagnosed with absence seizures, a type of epilepsy that causes a child to blank out or stare motionless for a few seconds. Absence seizures can affect memory and concentration and get in the way of learning.

Epilepsy – the most common neurological condition that affects 50 million people around the world and 350,000 Canadians – can be tough to live with.

Those in treatment often explore a range of available options including medication, surgery, ketogenic diet and more recently – cannabis, before they arrive at a treatment that works best for them.

According to Epilepsy Toronto, when a child is diagnosed, most parents feel alone and often question whether they could have done something to prevent seizures. Parents worry about whether their child will respond well to treatment and how they’ll adjust to their new reality. They also worry about the potential side effects of medications and the impact of missing school due medical appointments.

“When Tobin was diagnosed with epilepsy, I worried about his safety, his learning, and whether there would be any permanent damage,” says mother Tracy Cummins.

Anyone can develop epilepsy and seizures can happen at any time, anywhere. The unpredictable nature of the disorder is what drives the feelings of fear for parents, according to research by Epilepsy Toronto.

Connecting with other families going through a similar experience is what helped her family get through her son’s diagnosis.

Elizabeth Donner, pediatric neurologist at the Hospital for Sick Children treats children with medication and surgery, and in cases of more complex epilepsy – with a low carb, high-protein and high-fat ketogenic diet. She says this type of treatment can bring on more fear for parents as they worry about their child’s ability to adapt to and stick with the highly-restrictive regimen.

“Children who go on the ketogenic diet have the most resistant epilepsy,” says Donner. “Because we’re using food as medicine, it changes the dynamic of a family.”

In an ongoing study funded by the Ontario Brain Institute, Donner is tracking the challenging trajectory of starting a ketogenic diet and its affect on families. The findings will help inform how families can be best supported in their epilepsy experience.

Adjusting to a child’s diagnosis takes time for most families. Experts recommend that parents get the information and the support they need to navigate the life changes that come with epilepsy. As parents come to terms with the diagnosis, new family routines can help provide a sense of normalcy for all.

On the research front, there’s new hope for those living with epilepsy.

Dr. Taufik Valiante, neurosurgeon and director of the Surgical Epilepsy Program at the Krembil Brain Institute and Associate Professor of Neurosurgery at the University of Toronto is breaking new ground in epilepsy research. Valiante is working to develop an electronic device that can be implanted in the brain to recognize, predict and prevent seizures from happening in the first place. The implant would offer an alternative to surgery, which involves removing a part of the brain that triggers seizures. Currently, 30 per cent of those living with epilepsy need surgery to manage their condition.

“Our goal with this research is to improve the quality of life for those living with epilepsy and to better understand the human brain, something we know very little about,” says Valiante.

More than 80 per cent of children diagnosed with absence seizures will outgrow it in their teen years.

Tobin, now 17, has outgrown his epilepsy and is doing well.

Soon after his diagnosis, Tracy reached out to a local organization for support and is now urging other parents to do the same. She says connecting with other families going through a similar experience is what helped her family get through her son’s diagnosis.

“Epilepsy Toronto opened their arms to us – they welcomed us to summer camps and information sessions,” says Tracy. “For Tobin, participating in support programs helped build his confidence and prepared him for the future.”