Toronto family hopes for access to controversial treatment to cure baby’s rare epilepsy

TORONTO – Kaitlyn Pogson is a bubbly, giggly, blue-eyed, blonde-haired baby girl.

While she looks like a typical baby, her parents know that as she gets older, she’ll regress, facing developmental and cognitive delays because of a rare form of infant epilepsy called Dravet Syndrome.

It’s described as potentially fatal – the young victims have seizures frequently and for extended periods of time. Last Tuesday, for example, on what was any other day at home, Kaitlyn had an hour-long episode.

“You feel helpless… all you can do is stand and watch, there’s nothing you can do to help your child,” Kaitlyn’s father, Barry, told Global News.

Sometimes seizures are so strong, Kaitlyn’s parents take her to hospital. The 19-pound baby could be asleep and recovering for days because she receives heavy doses of medication to interrupt the seizures.

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Dravet Syndrome, also known as severe myoclonic epilepsy of infancy, usually appears in infants as early as one year old. Babies will encounter a seizure – for Kaitlyn, it happened at two months – and the frequency  of seizures quickly escalates.

“Dravet syndrome is one of the bad forms of epilepsy,” Dr. Berge Minassian, of Toronto’s Hospital for Sick Children, said. It’s genetic, but it’s not hereditary.

The episodes are so uncontrolled and so long, they interrupt a child’s traditional development. By age one, those with Dravet start to regress and even plateau in their growth.

“They invariably have developmental delays, they have intractable seizures, they sometimes develop autism. It’s not just the seizures, it affects their cognitive function quite severely,” Minassian explained.

It’s been hard for Kaitlyn’s parents, Barry and mother Shannon, to know that their daughter is headed for more health issues.

“It’s difficult to think that the worst hasn’t happened yet, that it’s not going to get better anytime soon. It’s going to get much worse and this is going to be as normal as she gets,” Barry said.

Dravet Syndrome also isn’t responsive to typical drugs.

That’s why her parents hope they can gain access to a controversial treatment called CDB, or cannabidiol. It’s one of the 85 cannabinoids found in marijuana, which is why the therapy is such a touchy issue in healthcare.

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It’s been used to help with epilepsy, multiple sclerosis spasms, anxiety, schizophrenia, nausea and convulsions.

It’s an oil that’s taken orally, and isn’t smoked.

Shannon and Barry stumbled upon it while researching potential treatment options for their daughter. One story, Charlotte’s Web of Suffering, which chronicles a Colorado girl’s experience with Dravet Syndrome and CBD caught their attention.

After trying the therapy, the parents say Charlotte’s seizures decreased by 99 per cent. Other parents in the United States have tried it with great success, Shannon said.

It’s not available in Canada, though.

“This isn’t clinical trial evidence and doctors need clinical evidence. It’s all anecdotal,” she explained.

Canadian researchers also aren’t paving a way to CBD in Canada, either. As far as Shannon knows, there is no research on CBD underway north of the border.

Barry suggests it’s because the medicine stems from the marijuana plant.

“There’s a stigma attached to marijuana and when you add toddlers into the equation, people get their backs up,” he said.

“If this was a plant that was just discovered in the mountains yesterday and had no ties to anything, people would be hailing it as a miracle drug. It’s a lot to do with people’s perception of what we’re looking for,” Barry said.

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Twenty per cent of kids with Dravet don’t live into adulthood. Some rely on wheelchairs or as adults, they have the mental capacity of an elementary school student.

Right now, Barry and Shannon keep Kaitlyn on a 24-hour watch to make sure she doesn’t encounter seizures overnight.

“We’re trying to have hope in something and this right now is our only hope,” Shannon told Global News.

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