Ray Hagar

rhagar@rgj.com

It's called Charlotte's Web and it is a strain of marijuana that won't get you stoned.

Yet this particular strain of pot is considered a wonder drug by parents and doctors who use it to treat children with epilepsy and other seizure-causing conditions.

For children like 8-year-old Samuel Brady of Carson City, getting access to the Charlotte's Web tincture and oil that is processed from the marijuana plant will be a matter of life and death.

"I will sell my house, everything I own, to get ahold of this medication for my son," said Phillip Brady, Samuel's father. Phillip Brady and wife Stacie are both teachers in the Carson City School District.

When medical marijuana dispensaries finally open in Nevada sometime in 2015, Charlotte's Web is expected to be one of the most sought-after strains, including by families such as the Bradys.

"Every time he has a seizure, he has a 20 percent chance of dying," Brady said.

"My wife is part of a support group, and she sees and hears about the kids dying all the time," Brady said. "They will be 3 years old, 4, 5 or 6. We have seen them up to 14 years old. They will have a seizure, go into cardiac arrest and die."

Watching grass grow

It's going to take time for Nevada's still-developing medical marijuana industry to put down roots.

When Nevada's indoor grow houses finally begin growing marijuana — perhaps late this year — it will take six months for the plants to mature. And to make just a small amount of Charlotte's Web tincture or oil takes a lot of marijuana.

Along with dispensaries, grow houses and testing laboratories, Nevada's law also legalizes marijuana kitchens.

That is where the raw marijuana plant is processed into the Charlotte's Web tincture plus other marijuana-laced edibles such as chocolate bars, cookies, butter and even cotton candy.

Charlotte's Web is probably the best medicine available to help cut the number and severity of seizures, said Dr. Krista Lee Colletti, a pediatrician at Aspen Pediatrics in Reno.

"Especially for children with certain kinds of seizures, we really don't have any (other) kinds of medications that help," Colletti said.

"So the children end up being put on various types of different anti-seizure medicines that have their own side effects, including sedation, which will affect long-term development or massive weight gain that affects their health in the long run, as well," Colletti said.

"And the children, despite being on medicine that causes pretty awful side effects, still continue to have seizures, 10, 20 times a day."

The secret to Charlotte's Web is a substance called cannabidiol, or CBD. That's different from marijuana's euphoria-causing ingredient tetrahydrocannabinol, or THC.

Charlotte's Web has such a low amount of THC that it was nicknamed "Hippie's Disappointment" when it was first cultivated in Colorado for a young epileptic patient named Charlotte.

'My hands are tied'

The medicine that will help Samuel Brady will remain out of reach to him even when Nevada's dispensaries, indoor grow houses, testing labs and kitchens are open for business.

"You have to be 10 years old to get a medical marijuana card in Nevada, and he is only 8 years old," Phillip Brady said. "So basically, we are seeing our son sort of slowly die."

"It chafes on you," Brady said. "And I easily find myself getting angry and then I don't know what to do. My hands are tied."

Brady said he is willing to do just about anything to get Charlotte's Web for his son. When asked if that includes smuggling it from Colorado, Brady said:

"It would be very easy to say, 'Yes, I am willing,' But I don't know someone who can even begin to help out, so I don't know if that is even a possibility."

The Bradys are on a waiting list to get Charlotte's Web tincture in three states. So far, they're still waiting. There's just too much demand and not enough supply.

"So if I had to break the law to get it?" Brady said, pausing to collect his thoughts. "I know I have to be careful when I say this ... but how far would I be willing to go? I'd be willing to go pretty far.

"I have no record, no criminal history. I just happen to have a son whose life is on the line.

"And what husband or wife, what mother or father would not do just about anything to save their kid?"

A risky process

The Bradys' dilemma is shared by many parents of children with seizure disorders, Colletti said.

Some parents can legally grow their own medical marijuana in Nevada if they have a medical marijuana card. Others could grow it illegally.

But turning that into a life-saving tincture or oil is a risky process, Colletti said.

"Right now, the parents are cooking this on their stove, and so they don't have the capability to test it to know exactly what the percentages or ratios (of THC and CBD) are," Colletti said.

"The whole thing is not legal now, so a lot of these families are going to outside states — people they know in Colorado or California — to get them something that they are hoping that the CBD oil is at the right ratio to help their child," she said.

Colletti said breaking down a marijuana plant into an oil is a complicated process, "and these are not families who are chemistry astute. They are just trying to do anything they can to prevent their child from having another seizure that might kill their baby."

Meanwhile, experts in the medical marijuana industry say parents seeking out the Charlotte's Web tincture or oil are driving research for drugs that are high in CBD and low in THC.

Salwa Ibrahim, co-owner of the Blüm dispensary in Oakland, Calif., said some parents with children who suffer from seizures are breeding and cross-breeding marijuana plants that no longer have any THC, which can be a problem.

"It sounds great in theory, but what we are finding is that it actually has a reverse effect in some situations," Ibrahim siad. "The THC is actually a very important component combined with the CBD."

A long wait

Samuel Brady has taken 10 pharmaceutical medications for his seizures and is currently on a few, his father said.

"But the medication doesn't work," Brady said. "That is why we are going to all this effort" to get Charlotte's Web.

Two days earlier, Samuel Brady had his latest bout of seizures.

"My wife was up with him all night," Brady said. "We think he had about 40 seizures. The initial ones, the first 10, were very intense and violent and last about a minute and a half to two minutes and then they tapered off. The other 25 or 30 were probably 30 seconds long each."

Samuel's seizures can be extremely alarming to others who are not familiar with them.

"When Samuel's current teacher saw him have a seizure, she burst into tears and had to take the rest of the day off," Brady said. "His seizures are violent."

The Bradys stay close to Samuel, whose seizures can be sudden. Stacie Brady gave up a career in geography and map-making to become a teacher at Mark Twain Elementary School so she could be close to Samuel.

The couple also have two daughters who are "perfectly healthy," Phillip Brady said.

"We tried to let my mom watch him a couple of times, and she called an ambulance both times he had a seizure. We said, 'Mom, you don't need to always call an ambulance.' But she can't help it. She freaks out."

Charlotte's Web: A calming effect

The Charlotte's Web has a calming effect on children who suffer from seizures, Stacie Brady said.

"Basically, a seizure is a firestorm of electrical activity that is out of control and you can't stop it," she said. "It has to stop on its own."

Charlotte's Web "does the calming in a natural way," Stacie Brady said, unlike Samuel's current medications, which "are neurotoxins, and we are putting them into my son."

The cost of Charlotte's Web would be about $700 a month, which the Bradys said they could afford because they are debt free and willing to pay anything to help Samuel.

Yet Nevada needs dispensaries that will cater to parents and hopefully supply the medicine at a reasonable price, Colletti said.

"They really need to have a parent-oriented dispensary that is looking out for the kids so we can try to keep costs low for these families," Colletti said. "A lot of them have already been financially devastated by their child's diagnosis already. So we don't need to have somebody trying to profit off of their desperation."