Author Archives: DHamel

Mother underscores importance of diagnosing ESES epilepsy early

June 7, 2018

By Deron Hamel

Jennifer Young says parents should be aware of the symptoms of Electrical Status Epilepticus during Sleep (ESES) epilepsy, a condition that appears in childhood and does not present itself through seizures but rather as learning difficulties and behavioural changes.

Jennifer’s son was diagnosed with ESES when he was seven years old and in Grade 2. It was a “very sudden change,” she says.

The first sign Jennifer says she noticed in her son was that he was suddenly having learning difficulties at school. He then began experiencing behaviours he had not previously had; he had done well in school his previous year. His clothes were also bothering him so much he had a difficult time getting out of his pyjamas in the morning, and he couldn’t wear gloves in winter because they bothered his hands.

She took her son to their family doctor. An MRI and an EEG were ordered. While the MRI didn’t show anything, the EEG showed some abnormalities, so Jennifer’s son was eventually referred to a neurologist at McMaster University Medical Centre, who ordered a sleep-deprived EEG test which shed more light on his condition.

What doctors discovered was that Jennifer’s son was having epileptiform discharges that were not causing visible seizures in his sleep.

“They had him on treatment right away,” Jennifer says.

Jennifer says her son’s symptoms seemed “psychological.” There was no visible indication her son had been having seizures, so she credits the family’s doctor for pushing for more testing. It was the doctor’s diligence, she says, that led to her son being diagnosed with ESES.

“If it wasn’t for her, I don’t know where we would be; she has done a lot for us on our whole medical journey,” Jennifer says.

Jennifer says some of the symptoms parents may notice in children with ESES epilepsy are sudden changes in behaviour; ADHD-like symptoms, including difficulty in school; language regression; and difficulty sleeping.

Because Jennifer’s son was diagnosed early, doctors were able to control the epileptic activity he was experiencing with medication. But if ESES epilepsy is not detected early, it can become more severe.

Now nine years old, Jennifer’s son is enjoying a better quality of life, Jennifer says, adding that he continues to be monitored by his neurologist. He plays baseball, spends time with other children and his schoolwork has improved.

“It’s day and night,” Jennifer says. “It was unbelievable to get our son back.”

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 deron(at)axiomnews.com.

Two lots of Primidone recalled, people who’ve taken the medication urged to contact their pharmacy

April 27, 2018

By Deron Hamel

TORONTO – Anyone who has taken the anti-seizure medication Primidone to control their epilepsy in the past three years should speak to their pharmacist to determine if their prescription has been affected by a recent recall, says Epilepsy Ontario board member Rahim Ismail.

On April 6 manufacturer AA Pharma Inc. voluntarily recalled two lots of Primidone, an anti-seizure medication in the barbiturate class, after trace amounts of lead were discovered in tablets.

The lots affected by the recall are 125-mg tablets, lot number MT4040; and 250-mg tablets, lot number MM3274.

Ismail says the lot numbers “go back a couple of years,” so even if a person is no longer taking the medication, they should still check with their pharmacist to determine if they were dispensed Primidone that was manufactured in the two lots.

To date, there has not been a specific safety threat identified by Health Canada, but people who have taken Primidone should still be vigilant in contacting their pharmacist to mitigate any risk.

“Health Canada is monitoring the company’s recall,” Health Canada says on the recall website. “Should additional safety information be identified, Health Canada will take appropriate action and inform Canadians.”

Ismail emphasizes that only the two lot numbers are affected by the recall, but the only way one can determine if they’re affected is to visit their pharmacist, who will have records of the lot numbers of medications they’ve been prescribed.

“Lot numbers (of Primidone) that are assured to have no lead in them are being dispensed, but if people have the active drug at home they should take it back to their pharmacy to make sure that they haven’t been affected,” Ismail says.

“If they are part of the affected lot, then pharmacies are replacing that stock.”

More information about the recall can be found on the Government of Canada’s medication recall website, which provides updated information. Click here to access the website.

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 deron(at)axiomnews.com.

Two women launch epilepsy awareness campaign in Sudbury

March 19, 2018

With no epilepsy support centre in town, Leslie Moutsatsos and Jenny Lamothe want to build support for Epilepsy Awareness Month

By Deron Hamel
March is Epilepsy Awareness Month, and with no epilepsy support centre in Greater Sudbury, Leslie Moutsatsos and Jenny Lamothe have taken it upon themselves to create a campaign to raise awareness of seizure disorders in the Nickel City.

Leslie Moutsatsos and her son, Troy, are decked out in purple in support of Epilepsy Awareness Month.

Both Moutsatsos and Lamothe understand the importance of raising awareness about epilepsy; Moutsatsos’s son, Troy, and Lamothe are living with the condition, which affects an estimated one per cent of Canadians.

It was only a few weeks ago when Moutsatsos, who co-owns a restaurant, P&M’s Kouzzina, teamed up with Lamothe, a freelance writer, to create the awareness campaign.

P&M’s Kouzzina is a popular eatery in Sudbury, so it was a natural fit to use the restaurant as an avenue to reach people. Moutsatsos has turned to her business contacts to gain support for the campaign, and everyone has been quick to jump on board.

“It has exploded since then,” Moutsatsos tells Voices of Epilepsy.

To contribute to the campaign, 15 Sudbury businesses are donating portions of their sales to epilepsy research or decorating their establishments in purple, the official colour of epilepsy awareness.

P&M’s Kouzzina is donating $2 from selected meal and beverage items to epilepsy research. There are also T-shirts for sale that include a $4 donation. Bella Flora, a local florist, is donating money from the sale of purple flower arrangements. Pricked Tattoos is donating all money raised from a tattoo auction. Laurentian Chrysler has purple balloons tied to cars on display in its lot throughout March.

Jenny Lamothe, a freelance writer, says she’s pleased to see how many people in Greater Sudbury have been looking for more epilepsy awareness and are now seeing it through the campaign she and Leslie Moutsatsos created.

People are taking notice of the campaign, and that’s encouraging, Moutsatsos says. At a recent event P&M’s Kouzzina hosted, there was a young woman who has epilepsy attending. She approached Moutsatsos to tell her how happy she was to see the awareness campaign gaining momentum.

“It was the very first time in her 24 years that she has now felt comfortable enough to say to people, ‘I have epilepsy.’ She is so proud to say it and not be shy, embarrassed or stigmatized,” Moutsatsos says.

“Those are the stories we want everyone to realize.”

Lamothe says the most exciting part of the campaign for her has been learning about the many people in Greater Sudbury who’ve been looking for more epilepsy awareness and are now seeing it through this campaign.

“They’ve been feeling that not only is there no one here (offering epilepsy support services), but that they have been left to themselves to figure out how to live their best life with epilepsy,” she says.

“For me, it has been (exciting) to see how many people have been so supportive and seeing people with epilepsy come forward.”

Moutsatsos and Lamothe say they plan to make this an annual campaign that will snowball. With no epilepsy support centre in town, Moutsatsos says Sudbury has not “gone purple” yet, but she’s determined to see that change.

“I don’t know how purple we are yet; we might just be a light mauve, but by next year we plan on being deep, vibrant purple,” she says.

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 deron(at)axiomnews.com.

Toronto couple concerned after learning OHIP+ will not cover daughter’s anti-seizure medication

February 9, 2018

By Deron Hamel

Monika and Adam, a couple from Toronto, say they were “shocked” to learn in January that the new Ontario Health Insurance Plan (OHIP) drug program OHIP+ will not cover the cost of their four-year-old daughter Ava’s anti-seizure medication.

OHIP+, which came into effect Jan. 1, is providing more than 4,400 drug products free to anyone under 25 with chronic health conditions who has a prescription and a valid OHIP card.

But the medication Ava takes, a generic version of Keppra, is considered “limited use” and not covered by OHIP+ because Ava did not meet the eligibility requirements, her parents say.

Monika and Adam were told that to be eligible for a limited-use medication under OHIP+, a patient must first try two other formulations that don’t work.

However, after Ava was diagnosed with focal epilepsy in summer 2017, two neurologists at Toronto’s Hospital for Sick Children (SickKids) agreed Keppra would be the best medication for her to take because it poses minimal side effects and does not require regular blood tests to monitor the medication’s effect on kidneys.

“It was a complete shock because it was covered before, so why isn’t it covered now?” Monika says.

“It’s very frustrating,” Adam adds. “You’re covered, you’re moving along … and then, out of the blue, you’re told you’re not (covered).”

The couple supports the well-meaning intention of OHIP+, but Monika and Adam say it’s a “flawed strategy” because some Ontario families will now struggle to pay for medications previously covered by OHIP.

Monika and Adam say their issue with OHIP+ is that medications people were already taking were not grandfathered when the program came into effect. There is a 60-day grace period, but after that Ava’s prescription will not be covered by OHIP+.

While the couple has extended medication coverage for Ava’s prescription, they’re yet to hear if their daughter’s medication will continue to be covered.

For Monika and Adam, it’s the principle of the situation that’s most upsetting.

“We’re in a situation where we will be able to (deal with the costs), but there are lots of other families who really can’t afford (the costs), and for them, it’s going to be ‘do I put food on the table or keep my child on these drugs that work?’ ” Monika says.

Most importantly, Monika and Adam say they’re not prepared to subject Ava to trials with other anti-seizure medications covered by OHIP+ when generic Keppra is working well for their daughter.

Ava had to cope with the initial side effects of the generic Keppra while her body became accustomed to it, and Monika and Adam say they do not want to have to put their daughter through that process again.

And no one else should, either, they add.

“We do not want to have to wean her off one medication just because the government dictates it – they don’t know our situation, and they’re not the ones who have to sit with her when she is crying in pain,” Monika says.

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 deron(at)axiomnews.com.