Yukoners launch epilepsy support group

Gabriel Hopkins, 11, is very matter-of-fact when he talks about epilepsy. His explanations are a mix of technical detail and helpful advice.

Gabriel Hopkins, 11, is very matter-of-fact when he talks about epilepsy. His explanations are a mix of technical detail and helpful advice.

“It’s a thing that causes the electricity going through the nerves in your brain to sometimes jump off the nerve but come back on. But since it’s the speed of light, it’s very quick and you don’t notice it, and it causes you to have a seizure.

“Your body kind of seizes up and you lose control. It can go on from five seconds up to about two minutes. If it goes over, that’s bad and you should probably get an ambulance.

“After that, your body is numb and you’re very tired, because you feel like you just ran a marathon.”

Gabe has been having seizures for about three years. He moved to the Yukon about three months ago with his family.

His mom, Angela Drainville, had been looking for Whitehorse-based support for families living with epilepsy ahead of the move.

That’s how she met Fawn Fritzen.

Fritzen, better known for her talent as a singer-songwriter, has a daughter with epilepsy.

Together, they have spearheaded an organization dedicated to improving the lives of people with epilepsy in the Yukon, and teaching Yukoners who aren’t directly affected more about the disorder.

They launched an informational website, epilepsyyukon.ca, this week to coincide with yesterday’s Purple Day, an international epilepsy awareness campaign.

Fritzen’s journey into the world of epilepsy began when her daughter Jade Pealow was just two.

“She was in bed with me and my husband, and I felt this rhythmic movement that was really odd. I woke up and I put on my glasses and I looked. I recognized it as a seizure, and I woke up my husband and I said ‘Jade’s having a seizure.’”

It was incredibly violent, said Fritzen, who was pregnant with her second daughter at the time. Jade started to turn blue.

By the time her husband had gotten off the phone with 911, it was over. Jade was passed out, unconscious from the exertion.

It probably lasted a little more than a minute, but it felt like forever, Fritzen said.

Two days later there was another, and then they increased exponentially from there.

“It got to the point where she was literally seizing non-stop. She was on medications that were making her zombie-like.”

The tiny toddler was in hospital in Whitehorse and Vancouver for weeks, getting endless pokes and tests. She got really good at having blood taken, said Fritzen.

But medications weren’t helping.

“Every time we started her on a new one she would develop new types of seizures, and get worse.”

Eventually she saw an improvement under an extreme diet program, supervised by neurologists at BC Children’s Hospital, that greatly restricted Jade’s intake of carbohydrates and protein.

That might seem like a gentle and natural intervention compared with medication, but it was anything but, said Fritzen.

It nearly destroyed Jade’s liver at one point, she said. Everything had to be weighed down to a tenth of a gram.

But it worked. It’s been five years since Jade, who is now nine, had her last seizure.

And a year ago she was able to ween completely off the special diet.

“She’s finding so much joy in being able to eat whatever she wants,” said Fritzen. “It gives us a lot more freedom.”

Getting thrown into the world of having a child with epilepsy is a huge shock, both moms agreed.

Support from others who have been through the same thing can be a lifesaver.

“It’s a wonderful help to have other people who’ve been in the trenches and know how to actually deal with the systems and all of the new phrasing that you’re going to have to learn,” said Drainville.

Their advice to parents seeing a seizure for the first time is to call an ambulance, stay calm, start timing it and keep the area free of objects that they could hurt themselves by knocking into.

If possible, you can move the person onto their side into the recovery position, making sure their airway stays clear. And look out for secondary injuries they may have sustained during a fall or while seizing.

They also want people to know that seizures come in dozens of different types, and they don’t all look the same. Some just look like the person has drifted off into space for a moment, and can be hard to detect.

Information about seizure types is available on the website.

Both moms say they’ve found strength in how brave their kids have been through the process.

Jade’s strict diet affected other adults more than Jade, said Fritzen.

“She went to a birthday party, they’d be like, ‘What do you mean I can’t give her any? She can’t have watermelon or strawberries or something healthy?’ I was like, ‘No. Everything has to be calculated and weighed out.’ They would be really distressed and she was like, ‘Oh, I’ll help hand out napkins,’ or ‘I’ll help serve the cake,’ and that was her way of participating in the birthday party.”

“My son is a complete warrior who has just used it as a way to impact other people and to help him develop empathy,” said Drainville. “He’s very open about it and uses his experience with epilepsy to relate to other children who are going through things that might not be epilepsy but he can still get into their head-space. I’m so grateful for his strength.

“I’ve never heard him say that he doesn’t want to take his medication. He’s never given me a moment of struggle in going for testing, which can be unpleasant. It’s not painful, but it’s not nice.

“He has really been very brave, and that makes me as a parent very brave.”

Another lesson you’ll learn from Fritzen and Drainville is that just because epilepsy rules your life for a time, doesn’t always mean it will forever.

Gabe, who has seized several times a week for three years, had his most recent seizure three months ago, coinciding almost exactly with the family’s move to Yukon.

When asked about how it’s been to be seizure-free for three months, a wide grin broke across his face.

“It’s fun,” he said.

Visit epilepsyyukon.ca for information, or to get in touch with the organization.

Contact Jacqueline Ronson at

jronson@yukon-news.com

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