Living with Epilepsy

Dr. Colin Josephson Assistant Professor, Neurology & Community Health Sciences, O’Brien Institute for Public Health, Centre for Health Informatics, & Hotchkiss Brain Institute, University of Calgary

Gary Collins President, Epilepsy Canada

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Epilepsy Funding Epilepsy Research Can Help Change a Person's Life Epilepsy Canada raises money for research to find a cure for epilepsy and to discover solutions that improve the quality of life for those living with the disease.

Abigail Cukier

W

hile many effective medications exist to help people w it h epi lep s y, it’s challenging to predict which treatment will work best for an individual patient.

Doctors will try one medication and monitor its side effects and how effective it is. If it doesn’t work, they’ll try another medication. This can be a long, frustrating process for people living with epilepsy.

Dr. Colin Josephson is working to reduce this burden. “This process exposes patients to many months of potentially ongoing seizures and side effects, which are very disruptive mentally, physically, and socially,” he says.

“We want to be able to find the right medication for the right person at the right time.”

Dr. Josephson, Assistant Professor of Neurology and Community Health Sciences at the O’Brien Institute for Public Health, Centre for Health Informatics, and Hotchkiss Brain Institute at the University of Calgary, is leading a research study that leverages big data and machine learning to identify which treatment will work best for individual patients.

Funding research that will have a big impact The research involves collecting data from the brain waves (EEG) and MRI

results of 400 patients and combining it with their clinical and genetic information. Sophisticated computer software will use this information to create models that predict who will respond to a certain anti-seizure medication and who won’t.

Gary Collins, President of Epilepsy Canada, says that research like Dr. Josephson’s can have a major impact.

The organization awarded Dr. Josephson a 2021 New Investigator Award to help fund his research.

“We select projects that we think will make a difference in the lives of Canadians and Dr. Josephson’s project was really outstanding,” Collins says, adding that he knows just how much of an impact research can have on people’s lives.

Diagnosed with epilepsy in 1985, Collins’ seizures have been mostly controlled by medication ever since.

But about five years ago, his medication started causing side effects. He had trouble with balance, experienced tremors in his hands and eyes, and could no longer play sports or concentrate on reading. Then he tried a new medication.

“It’s been three years and the turnaround was amazing,” he says. “My balance is back. I’m back to physical activity, enjoying life. I can concentrate.

It was like a new beginning. So I have been the beneficiary of great research.”

About 300,000 Canadians are living with epilepsy, which is a neuro-

logical disorder characterized by repeated, unprovoked seizures. For about two-thirds of patients with epilepsy, medications will stop their seizures, while about one-third don’t respond to treatment.

Epilepsy can cause much fear and uncertainty The effects of epilepsy are far-reaching.

“Not knowing when a seizure might happen can cause a lot of fear and uncertainty. Epilepsy can affect your ability to get and keep a job, go to school, or socialize,” Dr. Josephson says. “If you have seizures, it means that you won't be able to drive. This takes away a huge degree of independence.” One in three people with epilepsy develop depression, while one in four have anxiety, says Dr. Josephson.

“Epilepsy is common but because many people with epilepsy don’t talk about it due to persisting stigma about the disease, the general population often isn’t aware of how prevalent it is and doesn’t fully understand its impact.

This has affected our ability to fund research,” says Dr. Josephson. “I would say that if you’re going to donate toward epilepsy research, you’re going to have a major impact on somebody’s life. I've seen how you can change a person’s life who has limited hope or expectations and then they’re able to go to school or work and drive and have a social life.

It’s really quite remarkable.”

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This article was made possible with support from Epilepsy Canada.

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With a Good Care Plan in Place, Children and Youth with Epilepsy Are Unstoppable With a solid care plan in place and good community support, children and youth living with epilepsy can live life to the fullest.

Anne Papmehl

E Mary Secco 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

pilepsy 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.

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. “W hile t hese medicat ions 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.

Wit h a n 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.

To learn more about epilepsy in children and youth, visit epilepsyswo.ca/ children-andyouth.

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 dayto-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

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.

GRAPHIC COURTESY OF EPILEPSY SOUTHWESTERN ONTARIO.

Plenty of resources available

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How Canadian Kids Can Benefit from Kid-Friendly Paediatric Formulations Canadian children need paediatric drug formulations to be more widely available — and tailored to the child’s age, size, condition, and medical needs.

Anne Papmehl

A

round half of Canada’s eight million children are given at least one prescription drug each year. Most of these are available only in adult formulations of capsules or tablets.

“There are many advantages to having solid form doses,” says Dr. Michael Rieder, CIHR-GSK Chair in Paediatric Clinical Pharmacology at Western University in London, Ont. “They’re cheaper to make, easier to transport, and have a long shelf life. But they’re very unsuited for paediatrics.”

Unlike adult medications, where doses are generally standardized and come in the form of capsules or tablets, children’s doses often require adjustments for age, body weight, and condition. Further, capsules and tablets are difficult for children to swallow. “With conditions like epilepsy, for example, the dosing often has to change dramatically over the course of the child’s life from infancy to adolescence,” says Dr. Rieder.

Dr. Michael Rieder CIHR-GSK Chair, Paediatric Clinical Pharmacology, Western University

Dr. Megan Thomas Associate Professor, Division of Developmental Paediatrics, Dalhousie University

Canada lagging in age-appropriate paediatric formulations Though advances have been made in age-appropriate paediatric formulations in the U.S. and Europe, most of them are not available to Canadian children. Because of this, our children are typically given adult pills or capsules that have been adjusted or altered into a different form like a liquid or powder — a process known as compounding.

Compounded drugs are considered off-label, meaning they’re used outside of the Health Canada-approved purpose or dose indicated on the label. Currently, between 75 and 80 percent of all medications prescribed in Canadian paediatric hospitals are administered this way. This opens the door to a range of issues, from dose accuracy, palatability, and storage to side effects and treatment failure.

Challenges to having innovative paediatric formulations in Canada Why does Canada lag in innovative paediatric formulations like micro pills, gel formulations, and melt technologies, all of which are now commonly

used in Europe and to a lesser extent in the U.S.? Part of the explanation has to do with economies of scale.

“It’s extremely expensive to formulate a medication and test it in different populations,” says Dr. Megan Thomas, Associate Professor in the Division of Developmental Paediatrics at Dalhousie University in Halifax, N.S.* “One of the challenges in paediatrics is there isn’t just one child population. You have neonates, children, and adolescents, so you have to test in multiple different age groups, which makes it more costly.”

With conditions like epilepsy, for example, the dosing often has to change dramatically over the course of the child’s life from infancy to adolescence.

Related to this challenge is Canada’s smaller market size compared to Europe and the U.S. “Given that some of the conditions we see in paediatrics are very rare, only a very small number of people would benefit from these paediatric-adjusted medications, which would make it less profitable for pharmaceutical companies to develop them in Canada,” says Dr. Thomas.

Finally, there’s the question of political will. “It really requires political direction and will to get it done, and I hope it will eventually happen here, but it’s a gap that other places around the world are filling in a lot faster than we are,” says Dr. Rieder.

Can we learn some lessons by looking overseas? “A really big change occurred within the U.K. in 2005 where the government put a lot of investment into creating research networks,” says Dr. Thomas, who recently moved to Canada from the U.K., where she

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worked in paediatrics for over three decades. This resulted in the creation of the Medicine for Children Research Network, which includes paediatric pharmaceutical trials. “Following on from that was the Paediatric Regulation set by the European Medicines Agency (EMA), which came into force in January of 2007,” says Dr. Thomas.

The aim of this regulation was to ensure the development and availability of medicines for children aged zero to 17 in an appropriate formulation with appropriate dosing.

Prior to 2007, a lot of the medications used in children in the E.U. had never actually been tested in children.

“Just as in Canada, we were kind of extrapolating what we thought were the best doses based on adult data and the formulations were often done as compounding or what we call ‘specials’ in the U.K.,” says Dr. Thomas.

Canada has the expertise and resources to make it happen To implement the regulation, the EMA redirected private and public funds toward these previously-neglected areas through incentives, obligations, and rewards.1 The EMA also offered the pharmaceutical companies the expertise of clinicians working in the field of paediatric pharmacology. Dr. Rieder believes the same could easily be done in Canada. “I think we have a great opportunity because Canada is rich in paediatric pharmacologists and there are good centres across this country with people who could do the work to move this forward,” he says. “I think we just need a bit of a push from government to get there.”

True, there will be some increased costs, “but we would hope that we would avoid the costs of giving something where either major mistakes can be made, side effects can occur, or contamination can be introduced,” adds Dr. Thomas.

*The comments expressed by Dr. Rieder and Dr. Thomas reflect their own opinions and experiences.

1

https://www.ema.europa.eu/en/humanregulatory/overview/paediatric-medicines/ paediatric-regulation

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