Author Archives: DHamel

Epilepsy Ontario urging people to check Zarontin capsules after defects reported

September 30, 2016

By Deron Hamel

Epilepsy Ontario is urging people taking 250-mg soft-gel capsules of the anti-seizure medication Zarontin (ethosuximide) to closely scrutinize their capsules to ensure they are not defective, following a warning issued by Erfa Canada 2012 Inc. and Health Canada.

Erfa Canada 2012 Inc., the company that manufactures Zarontin, and Health Canada have received reports of broken or leaking 250-mg Zarontin soft-gel capsules. Reports received by Health Canada have included an increase of seizures from some people taking capsules that had an unusual appearance, for example, dull or cloudy; or sticky, coated with film, broken, cracked, leaking or clumping together.

“Defective capsules – such as those that are cracked or leaking – can lead to a loss of medicinal ingredient, reducing the effectiveness of the medication,” Health Canada said in a press release.

“This could potentially lead to a reappearance or an increase in the number of absence seizures among patients.”

Zarontin is used to control absence seizures, a type of generalized seizure that usually lasts about five to 15 seconds.

In December, Shelley Enns says she noticed her 11-year-old daughter’s 250-mg Zarontin soft-gel capsules were coated with a film and were sticky. Enns took the capsules back to the pharmacy in Windsor that had filled the prescription to have them replaced.

But in April and July her daughter’s Zarontin capsules were again leaking and had to be replaced. During this time Enns’ daughter was experiencing an increase in absence seizures.

While Enns says she cannot pinpoint the capsules as being the cause of her daughter’s increased seizures during this time, the warnings from Health Canada and the manufacturer are concerning.

“I would like to know definitively that what the doctor has prescribed is what’s going into my daughter’s system,” Enns tells Voices of Epilepsy.

As a precaution, Epilepsy Ontario is recommending people taking 250-mg soft-gel Zarontin capsules inspect their medication to look for any defects such as cracks, cloudiness, stickiness or capsules that are broken open or clumped together.

Any bottles with defective capsules should be immediately returned to the pharmacy where they were purchased so they can be replaced. Bottles that do not contain defective capsules do not need to be returned.

Do not stop taking this medication unless advised to do so by your health-care provider, as suddenly stopping treatment could worsen the condition.

“Given that not all capsules are defective, and to avoid a shortage of this medically necessary drug, Zarontin capsules are not being recalled at this time,” Health Canada says.

Epilepsy Ontario is also asking that any adverse events related to Zarontin be reported to Health Canada by calling toll-free at 1-866-234-2345, or by reporting online, by mail or by fax.

Click here to visit Health Canada’s MedEffectTM website to learn more about this medication alert.

If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 1-800-294-0051, ext. 23, or e-mail deron(at)axiomnews.com. You can also leave a comment below.

Epilepsy Ontario, EpLink partnering on research of link between epilepsy and brain trauma

September 22, 2016

By Deron Hamel

Epilepsy Ontario announced today that it has entered a partnership with EpLink to fund a study to research the link between brain trauma and the development of epilepsy.

There is a body of evidence that shows people who suffer brain trauma are at increased risk of developing epilepsy. What is not known is why this happens. The study being undertaken by EpLink, Ontario Brain Institute’s Epilepsy Research Program, is aiming to solve this puzzle.

The study is being led by University of Western Ontario neurologist Dr. Jorge Burneo. With funding provided by Epilepsy Ontario through the William Donald Willis Fund, Burneo and his team will be creating a database of patients who developed epilepsy after sustaining brain trauma.

Using a type of state-of-the-art MRI technology called diffusion tensor imaging (DTI), Burneo and his research team will be able to examine brain mechanics with extreme precision.

DTI technology measures changes in water distribution within the brain at a molecular level. This helps to easier detect brain injuries not visible with an MRI, which only measures blood flow.

Allowing scientists to see where epilepsy forms in the brain at its earliest stages will help provide better treatment and long-term outcomes for people living with the condition, Burneo says.

“We want to see what kinds of epilepsy treatment (are) most responsive to various types of brain trauma,” Burneo says. “That way we can design better treatments for patients with brain trauma and maybe even prevent the onset of epilepsy.”

Epilepsy Ontario announced in July that for the first time in its 60-year history the organization will be funding research projects in partnership with EpLink and the Krembil Neuroscience Centre at Toronto Western Hospital.

A $400,000 donation to the organization by the William Donald Willis Fund will also be supporting research for the largest music therapy clinical trial ever conducted in Canada, as well as a first-of-its-kind study aimed at improving the long-term chances of success for brain surgery patients.

Paul Raymond, Epilepsy Ontario’s executive director, says the organization’s partnership with EpLink and the Krembil Neuroscience Centre is the start of a new era for Epilepsy Ontario.

“By partnering with some of Ontario’s leading epilepsy research centres, we can now contribute to the ground-breaking work being done in the lab to better understand the diagnosis and treatment for the almost 90,000 people with epilepsy in Ontario,” he says.

Project being developed to help police, first responders identify non-convulsive seizures

September 15, 2016

By Deron Hamel

Epilepsy Ontario is working on a project to create an information package epilepsy support agencies across the province can use to educate police services and first responders on how to identify people who are having a non-convulsive seizure.

The provincial agency is adapting a project created by Epilepsy Toronto to help build relationships with police forces to prevent people having non-convulsive seizures from being wrongly identified as under the influence of drugs or alcohol and being arrested for behaviour resulting from a postictal state.

“We are providing the material for the agencies to do outreach in their communities so they can connect with their local police forces and offer this training to them,” explains project manager Nikki Porter.

Some of the things police and first responders need to be mindful of when determining if a person is having a non-convulsive seizure include looking for Medic-Alert jewelry, checking for alcohol on the person’s breath or evidence of drug use, such as track marks on arms.

In preparation for this project, Epilepsy Ontario collected scores of stories from people living with a seizure disorder about their experiences with police and first responders.

One woman recounted how she woke up in a police station cell after having a sensory complex partial seizure outside a nightclub. She had no idea where she was and no memory of what had happened. Although she had not been drinking, police officers had arrested her for public intoxication.

“Sensory complex seizures are exhausting, terrifying and make you angry and emotionally upset when every single sense in your body takes over because of the misfires of the neurons in your brain go haywire – almost like when a power outage happens,” the woman writes. “When I am in what my family has called ‘seizure mode,’ I have some recall of what I was doing prior to the seizure and after. Everything in the middle is a blur.”

Fortunately, the woman’s public intoxication charge was thrown out and she received an apology from a justice of the peace after she and her mother went to the courthouse with the woman’s medical files.

While charges were dropped in this case, not everyone suffering a non-convulsive seizure has been so lucky, Porter says.

“One of the concerning things is that a number of the stories we received were about people being charged by the Crown,” Porter says. “When the people laying those charges are not aware that a person having one of these seizures doesn’t have control of their bodies or intention in their movements. (The Crown doesn’t) realize that they don’t have intent to commit the crime – which is one of the requirements for the act to be considered criminal.”

Summerfest has increased camper’s self-confidence, introduced her to new passions

September 8, 2016

By Deron Hamel

Since Laura Cunningham’s daughter, Sara, began attending Summerfest Camp eight years ago, she has gained a lot of self-confidence and has discovered two passions: archery and swimming. Sara is also planning to complete training so she can become a camp counsellor.

Sara Cunningham is seen here taking aim at a target with a bow and arrow. Archery is one of the passions Sara has discovered through Summerfest Camp.

Sara, now 15, attended Summerfest Camp for the first time when she was seven. Laura says she thought the experience was a “huge benefit” and Sara wanted to continue attending each summer.

“She has gained a lot of experience from (Summerfest Camp),” Laura tells Voices of Epilepsy. “She has grown with her maturity, with her confidence, with her self-esteem and she certainly has made tons of friends over the years.”

Held near Orillia at Camp Couchiching every summer, Summerfest Camp enables children aged six to 15 who are living with seizure disorders to attend camp with other children. The camp has the resources to meet the needs of children living with epilepsy and provides a setting where they can enjoy a carefree camping experience.

Like many parents, Laura says she was apprehensive the first year Sara went to camp.

“The first time she went to camp, I was obviously very nervous because she has epilepsy, so being away from home for two weeks and not knowing whether she would have a seizure while she was gone was pretty nerve-racking,” Laura recalls.

“But she definitely met all the challenges involved and she had a lot of fun, so that helped us the next summer when she wanted to attend again.”

Every summer Sara takes archery classes at Summerfest Camp, and it has become a passion of hers. She also takes instructional swimming and has reached her Level 8 Canadian Red Cross swimming certification, Laura says, noting Sara’s interests in archery and swimming have continued beyond camp.

Laura also commends the counsellors at Camp Couchiching. She notes that Sara has had three seizures on different occasions at camp. But the counsellors and nursing staff “went above and beyond” to keep her parents up to date on her condition and even stayed with her overnight when she had been admitted to hospital.

“Having such a great, caring staff has been amazing and we, as parents, know that she is in good hands while she is there,” Laura says.

Summerfest Camp was founded in 1994 by Anita Allen, a neurology clinic nurse at Toronto’s Hospital for Sick Children (SickKids).