Families are willing to try anything,' including medical marijuana, to help child

Lucy Brorson, 18 months, plays in her home in Stafford on Tuesday, Aug. 18, 2015. Lucy has a rare form of epilepsy, Dravet syndrome, and her parents have started treating her with cannabis oil.

 

 

 

 

 

 

 

by Amy Umble

The toddler lay in the hospital bed, her leg twitching and eyes drooping. Her body was reacting to a seizure attacking her brain, but little Lucy Brorson still lifted her hand when her mother asked for a fist bump. The 18-month-old loves to gently knock knuckles as a form of greeting. Lucy also waves hello, says “bye–bye” and a handful of other words.

But her parents fear her vocabulary will stop growing — or worse, still, disappear.

Lucy has Dravet syndrome, a rare form of epilepsy that has her tiny body under siege from frequent seizures. Her parents, Kimberly and Bendik, researched the condition and discovered that many children die. Those who live often have severe developmental and physical delays. About three-quarters develop some form of autism.

“We were obviously devastated,” said Kimberly Brorson.

The Stafford County family first began fighting back at the condition with a regimen of anti-seizure drugs and benzodiazepines. But the seizures kept coming, and the parents worried that Lucy would be damaged by both the neural activity and the drugs that were supposed to quell the seizures.

This summer, they turned to an experimental drug, one that has sparked controversy across the country. Desperate families have turned to marijuana to treat conditions that haven’t responded to traditional medicine.

The first seizure struck when Lucy was 7 months old. Her mother stepped out of the room for a moment and returned to find Lucy slumped over in her exercise saucer.

Kimberly called 911, and it took paramedics more than 30 minutes to calm the seizure.

Doctors chalked it up to a febrile seizure, perhaps caused by a fever after a vaccination. Such seizures alarm parents, but they don’t indicate a predilection for epilepsy.

Two weeks later, the family was on vacation in Texas when Lucy’s body began to shake. She was taken to Cook Children’s Medical Center, a hospital with experience in Dravet syndrome.

That geographical happenstance helped the youngster, who was diagnosed with the condition just before her first birthday. Many children with Dravet don’t receive a diagnosis for years.

The early diagnosis helped the Brorsons learn more about their options.

They enrolled Lucy in the Rappahannock Area Community Services Board’s early intervention program, so she could receive periodic evaluations.

They started a battery of medications — some aimed at preventing seizures, others given to stop a seizure once it starts.

It’s hard to know if the medicines work, because seizures usually start increasing around the second birthday of a person with Dravet.

Lucy’s seizures have been increasing. Some days, she has intense seizures that require a trip to the hospital. Other days, the seizures are mild, noticeable only by the twitching of an eyebrow or the trembling of a leg.

“If you aren’t paying attention, you’ll miss it,” her mother said.

But each seizure affects Lucy’s brain, and the damage could be permanent.

Kimberly Brorson wanted to prevent as many seizures as she could. But she wondered about the long-term affects of the benzodiazepines. Those psychoactive drugs can lead to dependence.

“And there aren’t rehab facilities for these kids,” she said.

She turned to social media for support, finding Facebook groups for families fighting the rare form of epilepsy.

“I don’t know what I would do without these people,” she said. “I can’t imagine going through this five years ago, without this resource.”

On Facebook, she learned about Charlotte’s Web, a formula of cannabis oil created for a little girl with Dravet syndrome. The formulation was low in tetrahydrocannabinol (THC), which provides the high marijuana users traditionally seek.

As Kimberly looked into cannabis oil, she discovered “a network of medical refugees” using marijuana to treat seizure disorders.

In Virginia, it’s legal to treat epilepsy with the oil, but there are no dispensaries. So the family orders it from outside the state.

The bottles of cannabis oil are shipped discreetly. Each day, Lucy happily consumes drops of the green liquid, which has a faint aroma of pot.

It’s too soon to know if the oil is helping Lucy — or if it’s making a difference for the hundreds of other American families turning to marijuana.

In a chart review of patients at Children’s Hospital Colorado, about one-third of families using marijuana to treat epilepsy noted a significant decrease in seizures, said Dr. Kelly Knupp, pediatric neurologist and epileptologist.

The review included anecdotal accounts of seizure activity, and not official measures in the form of electroencephalograms, she said.

“I don’t think there’s a great understanding of this yet,” Knupp said.

And researchers don’t know why marijuana would slow seizure activity. Still, for desperate parents like the Brorsons, the drug represents a chance at life. Research shows that in disorders like Dravet, the epilepsy is often medically refractory—meaning the seizures won’t respond to traditional medications. About 30 percent of epilepsy patients fall into this category—and many Dravet patients do, Knupp said.

“This is a syndrome with poorly controlled seizures,” Knupp said.

“Families are willing to try anything to make the seizures go away I certainly understand families feeling like they have to try everything for their child.”

Research of epilepsy and medical marijuana is taking off, and there may be more answers soon. The FDA has approved two studies of pharmaceutical grade cannabis oil, which could provide a more scientific understanding of how the drug interacts with seizures and how it affects children.

At this point, there is little information on either. Some studies have shown that recreational marijuana use does have a negative impact on adolescent brains, but it’s not known if cannabis without THC would also interfere with brain development.

Additionally, with no FDA oversight of cannabis, parents don’t always know what’s in the bottles they receive, Knupp said. An FDA sample study showed that many of the formulations didn’t “contain what they reported to contain,” she said.

Knupp recommends families using medical marijuana keep careful records — including a seizure diary, regular EEGs and periodic lab screenings.

For the Brorsons, it’s too soon to tell if Lucy is responding to the cannabis oil. But Kimberly Brorson has high hopes for her daughter.

“It’s been difficult, but I wouldn’t trade her for anything,” she said. “When you have a child who is fighting for their life every single day, it changes your perspective. We’ve learned a lot, and we’re connected to our community in a new way.”