“They were born at 40 weeks. … Charlotte weighed 7 pounds, 12 ounces,” Paige said. “They were healthy. Everything was normal.”
Seizures and hospital stays begin
The twins were 3 months old when the Figis’ lives changed forever.
Charlotte had just had a bath, and Matt was putting on her diaper.
“She was laying on her back on the floor,” he said, “and her eyes just started flickering.”
The seizure lasted about 30 minutes. Her parents rushed her to the hospital.
“They weren’t calling it epilepsy,” Paige said. “We just thought it was one random seizure. They did a million-dollar work-up — the MRI, EEG, spinal tap — they did the whole work-up and found nothing. And sent us home.”
A week later, Charlotte had another seizure. This one was longer, and it was only the beginning. Over the next few months, Charlotte — affectionately called Charlie — had frequent seizures lasting two to four hours, and she was hospitalized repeatedly.
Doctors were stumped. Her blood tests were normal. Her scans were all normal.
“They said it’s probably going to go away,” Paige recalled. “It is unusual in that it’s so severe, but it’s probably something she’ll grow out of.”
But she didn’t grow out of it. The seizures continued. The hospital stays got longer. One of the doctors treating Charlotte thought there were three possible diagnoses.
The worse-case scenario? Dravet Syndrome, also known as myoclonic epilepsy of infancy or SMEI.
Dravet Syndrome is a rare, severe form of intractable epilepsy. Intractable means the seizures are not controlled by medication. The first seizures with Dravet Syndrome usually start before the age of 1. In the second year, other seizures take hold: myoclonus, or involuntary, muscle spasms and status epilepticus, seizures that last more than 30 minutes or come in clusters, one after the other.
At that time, the Figis said, Charlotte was still developing normally, talking and walking the same day as her twin. But the seizures continued to get worse. The medications were also taking a toll. She was on seven drugs — some of them heavy-duty, addictive ones such as barbiturates and benzodiazepines. They’d work for a while, but the seizures always came back with a vengeance.
“At 2, she really started to decline cognitively,” Paige said. “Whether it was the medicines or the seizures, it was happening, it was obvious. And she was slipping away.”
When Charlotte was 2½, the Figis decided to take her to Children’s Hospital Colorado. A neurologist tested her for the SCN1A gene mutation, which is common in 80% of Dravet Syndrome cases. After two months, the test came back positive.
“I remember to this day it was a relief,” Paige said. “Even though it was the worst-case scenario, I felt relief just to know.”
Matt, a Green Beret, decided to leave the military.
“Every mission, every training I was going to do I was called home because she was in the pediatric ICU again or in the hospital again.”
They were quickly running out of options. They considered a drug from France. Doctors suggested an experimental anti-seizure drug being used on dogs.
Paige took her daughter to Chicago to see a Dravet specialist, who put the child on a ketogenic diet frequently used to treat epilepsy that’s high in fat and low in carbohydrates. The special diet forces the body to make extra ketones, natural chemicals that suppress seizures. It’s mainly recommended for epileptic patients who don’t respond to treatment.
The diet helped control Charlotte’s seizures but had a lot of side effects. She suffered from bone loss. Her immune system plummeted. And new behavioral problems started popping up.
“At one point she was outside eating pine cones and stuff, all kinds of different things,” Matt said. “As a parent you have to say, let’s take a step back and look at this. Is this truly beneficial treatment because of these other things?”
Two years into the diet, the seizures came back.
The end of the rope
In November 2000, Colorado voters approved Amendment 20, which required the state to set up a medical marijuana registry program.
There are eight medical conditions for which patients can use cannabis — cancer, glaucoma, HIV/AIDS, muscle spasms, seizures, severe pain, severe nausea and cachexia or dramatic weight loss and muscle atrophy.
The average patient in the program is 42 years old. There are 39 patients under the age of 18.
Paige had consistently voted against marijuana use. That was before Dravet Syndrome entered their lives.
Matt, now a military contractor spending six months a year overseas, used his spare time scouring the Internet looking for anything that would help his little girl.
He found a video online of a California boy whose Dravet was being successfully treated with cannabis. The strain was low in tetrahydrocannabinol, or THC, the compound in marijuana that’s psychoactive. It was also high in cannabidiol, or CBD, which has medicinal properties but no psychoactivity. Scientists think the CBD quiets the excessive electrical and chemical activity in the brain that causes seizures. It had worked in this boy; his parents saw a major reduction in the boy’s seizures. By then Charlotte had lost the ability to walk, talk and eat. She was having 300 grand mal seizures a week.