Pubdate: Sun, 18 May 2014
Source: Reno Gazette-Journal (NV)
Copyright: 2014 Reno Gazette-Journal
Contact: http://www.rgj.com/letters
Website: http://www.rgj.com/
Details: http://www.mapinc.org/media/363
Author: Ray Hagar

PARENTS PRAY FOR WONDER-DRUG STRAIN OF MARIJUANA

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 Blum 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."  
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