“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.”…
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.
Her heart had stopped a number of times. When it happened at home, Paige did cardiopulmonary resuscitation until an ambulance arrived. When it happened in the hospital, where they’d already signed a do-not-resuscitate order, they said their goodbyes. Doctors had even suggested putting Charlotte in a medically induced coma to give her small, battered body a rest.
She was 5 when the Figis learned there was nothing more the hospital could do.
That’s when Paige decided to try medical marijuana. But finding two doctors to sign off on a medical marijuana card for Charlotte was no easy feat. She was the youngest patient in the state ever to apply…
further details at CNN
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