Some people are so hung up on marijuana that people are even opposed to it being used for medicinal purposes. Thankfully those barriers are being broken down. Like many things, what is thought to be bad, can be used for good if it is done the right way. This story is inspiring:
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.
And then:
“Everyone said no, no, no, no, no, and I kept calling and calling,” Paige said.
She finally reached Dr. Margaret Gedde, who agree to meet with the family.
“(Charlotte’s) been close to death so many times, she’s had so much brain damage from seizure activity and likely the pharmaceutical medication,” Gedde said. “When you put the potential risks of the cannabis in context like that, it’s a very easy decision.”
The second doctor to sign on was Alan Shackelford, a Harvard-trained physician who had a number of medical marijuana patients in his care. He wasn’t familiar with Dravet and because of Charlotte’s age had serious reservations.
“(But) they had exhausted all of her treatment options,” Shackelfordsaid. “There really weren’t any steps they could take beyond what they had done. Everything had been tried — except cannabis.”
Paige found a Denver dispensary that had a small amount of a type of marijuana called R4, said to be low in THC and high in CBD. She paid about $800 for 2 ounces — all that was available — and had a friend extract the oil.
She had the oil tested at a lab and started Charlotte out on a small dose.
“We were pioneering the whole thing; we were guinea pigging Charlotte,” Paige said. “This is a federally illegal substance. I was terrified to be honest with you.”
But the results were stunning.
“When she didn’t have those three, four seizures that first hour, that was the first sign,” Paige recalled. “And I thought well, ‘Let’s go another hour, this has got to be a fluke.’ ”
The seizures stopped for another hour. And for the following seven days.
Go to CNN and read the rest of this remarkable story.