Chair – Global Outreach, International Bureau for Epilepsy, & Director of Strategic Initiatives, Epilepsy Southwestern Ontario
Dr. Elizabeth Donner
Director, Comprehensive Epilepsy Program, The Hospital for Sick Children, & Michael Bahen Chair in Epilepsy Research & Professor, Department of Paediatrics, University of Toronto
With a solid care plan in place and good community support, children and youth living with epilepsy can live life to the fullest.
Epilepsy is a chronic disease of the central nervous system characterized by the tendency to have recurrent, unprovoked seizures. Roughly 300,000 Canadians live with epilepsy, and about 42,000 of them are children and youth. In Ontario, the number of children and youth living with epilepsy is around 15,000 — or one in 100. “It’s the most common serious neurological condition of childhood,” says Mary Secco, Chair of Global Outreach at the International Bureau for Epilepsy and Director of Strategic Initiatives at Epilepsy Southwestern Ontario, a community epilepsy agency.
Apart from seizures, epilepsy has other impacts on children’s lives. “It can affect the way a child thinks, behaves, learns, and processes information,” says Secco. Additionally, some children with epilepsy also have associated conditions such as depression, social anxiety, or physical challenges, and may also feel stigmatized because of their condition. “The seizures are the part of living with epilepsy that we see or the tip of the iceberg, but there’s a lot going on under the surface that we also need to address,” notes Secco.
A Plan of Care gives assurance that kids are safe at school
The lack of general knowledge about epilepsy causes many parents to fear not only the chance of their child having a seizure event while outside of their care but also people’s reactions and the ability of other caregivers to help keep their child safe.
Fortunately, epilepsy can be a manageable condition, and awareness and education play an important role in addressing some of these concerns. In addition, under Ontario’s new policy — PPM 161 — every child living with epilepsy will have a Plan of Care while at school that is co-created with the student, parent, and school leadership. Part of the Plan of Care is training educators and school staff in how to recognize if a child is having a seizure and what to do if and when it occurs. “Provided a Plan of Care is in place, many children with epilepsy can participate fully in regular school activities like sports, clubs, and field trips,” says Secco.
Plenty of resources available
In addition to the care provided at hospitals and clinics across Ontario, there’s also a network of community epilepsy support agencies available. “I really encourage the parents of children who have been diagnosed with epilepsy to connect with one of these agencies so they’re not doing this all on their own,” says Secco.
Through these support agencies, families can find information and individualized advocacy tools, and have access to a range of support services. Epilepsy Southwestern Ontario’s Clinic to Community referral program, for example, gives the families of children and youth recently diagnosed with epilepsy the tools to understand the condition and manage it on a day-to-day basis.
Another resource is Epilepsy Southwestern Ontario’s Epilepsy for Educators tool kit, developed to help educators and school staff to create a safe and supportive learning environment for students with epilepsy. “With support from the Ontario Trillium Foundation and the Ontario Brain Institute and with input from experts at The Hospital for Sick Children (SickKids), Western University, and the University of Toronto, these materials have been very rigorously designed and evaluated and are now being used all over Ontario and are available to anyone in Canada and the U.S.,” says Secco.
Provided a Plan of Care is in place, many children with epilepsy can participate fully in regular school activities like sports, clubs, and field trips.
Working with health care professionals to establish a treatment plan
There are numerous treatment options for children and youth with epilepsy and they continue to evolve. “Most often, our first-line approach is to prescribe anti-seizure medication, because it offers the best chance of controlling seizures with the fewest side effects for most people,” says Dr. Elizabeth Donner, Director of the Comprehensive Epilepsy Program at SickKids and Michael Bahen Chair in Epilepsy Research and Professor in the Department of Paediatrics at the University of Toronto. “While these medications rarely treat the underlying cause of seizures, they do reduce the likelihood that the abnormal electrical activity in the brain will turn into a seizure.”
While about 70 percent of patients have seizures that are controlled by medication, for the remaining 30 percent with drug-resistant epilepsy, surgery can be a suitable option. “Anyone with ongoing seizures that are not controlled with medication should be evaluated as a candidate for epilepsy surgery because for a proportion of these people, surgery will significantly reduce or even eliminate their seizures,” says Dr. Donner.
Other treatment options include implanted devices such as vagus nerve and deep brain stimulation, medical cannabis, and dietary interventions such as the high-fat ketogenic diet. “Any epilepsy treatment plan should be co-created with one’s own health care provider because seizures are different for every child living with epilepsy,” says Dr. Donner.
With an accurate diagnosis, treatment options, and lifestyle management, people living with epilepsy today can lead full and active lives, just like those with other chronic conditions, like diabetes and asthma.
This article was made possible with support from Pendopharm.
The opinions expressed by Dr. Donner and Mary Secco are of their own accord and do not endorse the company or their products in any way.