Pubdate: Sun, 15 Dec 2013
Source: Portland Press Herald (ME)
Copyright: 2013 MaineToday Media, Inc.
Author: Mary Pols


A Low-Potency but Effective Strain From Colorado Offers Maine 
Families Hope, but Also Tests the Legal Limits of Medicinal Pot, 
Highlighting How Far Some Parents Will Go to Alleviate the Suffering 
of Kids Who Have Epilepsy.

On a dark night in November, Meagan Patrick drove from her home in 
Acton with her husband, Ken, and their two children to a medicinal 
marijuana dispensary in Portland. Ken parked and went in, while 
Meagan and the kids waited in the car. "It was literally in a back 
alley," said Meagan, a 31-year-old third-grade teacher.

Just a few months ago, this errand  shopping for medicinal marijuana 
to treat her baby daughter's epilepsy  would have been unfathomable.

Ken came out empty-handed. There was plenty of medicinal marijuana 
available but, as they had suspected, not the kind they were seeking.

So this Monday, Meagan plans to board a flight to Colorado with 
13-month-old Addelyn  "Addy"  to begin the process of becoming a 
resident there, far from family, far from Ken's job and their woodsy 
home in southwestern Maine but close to what she believes may be her 
best hope for her child's future.

About 100 families nationwide have already relocated to Colorado in 
order to obtain a strain of medical marijuana known as "Charlotte's 
Web" that has been shown to be effective in treating children with epilepsy.

Originally called "Hippie's Disappointment" by its growers because of 
what it lacked in traditional potency, namely the THC, or 
tetrahydrocannabinol, that gives users a psychoactive high, this 
strain of high CBD, or cannabidiol, marijuana was renamed for a 
little girl named Charlotte Figi.

Researchers at the University of Reading in England found that 
cannabidiol, one of many components in the marijuana plant, can 
radically reduce the number of seizures in epilepsy patients; it 
reacts with receptors within the body and works as an anticonvulsant. 
That was borne out by Charlotte Figi's case; at age 4 she was having 
300 grand mal seizures a week and had run out of pharmaceutical 
options. In her first week on this cannabis-derived medicine she had 
just one seizure. Now 6, she is 99 percent seizure-free.

In Maine, medical marijuana is legal, even for minors, provided they 
pass a certification process with the Department of Health and Human 
Services' licensing board. But the nearly two dozen Maine families 
who want to try it have run into numerous roadblocks.

The first is supply. Charlotte's Web, developed by Colorado grower 
Josh Stanley and his five brothers - widely referred to as the 
Stanley brothers - is not technically available in Maine, as the 
Patricks found. But Charlotte's Web rumors fly through this network 
of parents, many of whom originally connected on a private Facebook 
group called Maine Epilepsy Parents United.

Some say there's something just like it, or close enough, or that a 
Maine grower might be secretly working from a clone of the Stanleys' 
plants. Others whisper that someone in California might be willing to 
mail another high CBD strain to Maine. Or that maybe the high-CBD 
strain isn't needed at all, that maybe the plant in its raw form 
could yield a medicine just as helpful.

In this world where mothers ruefully count up the number of 
pharmaceutical options that haven't worked on their kids and dread 
the possible side effects of whatever comes next, nothing seems 
certain but the desire to give a natural product a try.

The second major obstacle is legality. It's not as simple as going to 
Colorado to pick up some clones of the Stanleys' plants and bring 
them back to grow in Maine.

Under federal law, marijuana is still illegal and classified as a 
Schedule 1 drug without any known medical benefits and with potential 
for addiction and abuse; it's in the same category as heroin and LSD. 
Anyone who imports it across state lines risks being charged with 
drug trafficking.

Even if a Maine family can obtain something similar - growers in 
Maine are working on high-CBD, low-THC strains right now - many of 
these children regularly cross state lines for doctor's appointments 
at Boston Children's Hospital or Massachusetts General. Their 
medicine has to go with them. As Joan Smyrski of Maine's Division of 
Licensing and Regulatory Services for medicinal marijuana points out, 
that's a lawbreaker.

"It's drug trafficking," she said.


What are parents supposed to do if they don't want to break the law 
every time they cross the Piscataqua River Bridge?

The Patrick family is taking the most extreme approach, in part 
because their daughter, Addy, is at such a vulnerable age 
developmentally. Every seizure in effect turns off her brain, however 
briefly, and stops her from developing as a healthy child does. The 
prognosis is that she'll likely develop more kinds of seizures as she 
gets older.

A seizure could kill her - 34 percent of all sudden deaths in 
children are caused by Sudden Unexpected Death in Epilepsy, according 
to CURE, an epilepsy research institution  and all will steadily slow 
her development.

But the medicines she takes are limiting her development as well, 
because of their side effects. She sleeps 22 out of 24 hours as is. 
The Patricks keep Addy's monthly supply of anti-seizure medication in 
a box the size of a beauty queen's makeup kit and it is always 
locked, for fear that her 4-year-old brother, Colin, might get into it.

The financial toll on her parents since her diagnosis at six months 
has already been considerable, even with help from family and 
friends, and maintaining households in two states is hardly a great 
option. But it represents hope, which can be hard to come by for 
these families.

"We are desperate, desperate parents," said Michelle Chumsae of York. 
Her 8-year-old son, Miles, requires a feeding tube and full-time 
care. His seizures, associated with Down syndrome, began when he was 
4 months old.

For several years they were under control through medication and the 
high-fat, low-carb ketogenic diet, but a year ago, they returned. 
Every new pharmaceutical she tries on Miles feels like a game of 
Russian roulette, Chumsae says. Will it work? And if so, will it also 
make him miserable?

Chumsae worries that medical marijuana may be over-hyped - "We're at 
risk of thinking there is some magical thing" - but if there were 
something entirely natural that could help these children, it would 
be a "game changer."

South Berwick mother Samantha Brown's daughter Kaylee, 2, was 
recently diagnosed with Dravet syndrome, a catastrophic childhood 
epilepsy. Her mother obtained a tincture of medicinal marijuana this 
fall - she declines to say where from  and has been using it with 
success. The seizures have slowed, and Kaylee seems happier and more active.

"I don't know if it is a coincidence, but that week she started 
exploding with words," she said.

Brown said she would consider growing plants herself, if need be. "My 
opinion before was just kind of neutral," she said. "I could never 
have imagined growing marijuana. However, now, with the amount of 
healing it can do?"


One in 26 of all Americans will develop epilepsy in their lifetimes, 
according to a spokeswoman for CURE, the epilepsy research 
institution, and one in 100 children will develop it. The Epilepsy 
Foundation estimates there are 45,000 new cases of epilepsy in 
children under the age of 15 each year.

Brunswick mother Christy Shake's son, Calvin, 9, was diagnosed with 
epilepsy at age 2. A fierce advocate for CURE, she has chronicled her 
search for a better anti-seizure medicine for Calvin - who is about 
to try his 11th type - on her blog at www.calvinsstory. com . It's a 
constant balancing act. One medicine might decrease the seizures but 
make him lethargic, or manic, or just give him the kind of intestinal 
issues that keep him chronically underweight.

She's moving through the certification process now and believes 
marijuana, whether a high-CBD strain or perhaps the plant in its raw 
form, could help. But she needs assurance that it would be readily available.

"How do you know that you can always get this?" Shake said. Calvin 
spun in a bouncy chair as she spoke, making noises that she said 
could be laughter, gas or an indication of an approaching 
seizure.  The prospect of improving Calvin's life with medical 
marijuana is tantalizing. "It's at our fingertips," Shake said.

But not quite within these parents' grasp. Most of the Maine parents 
interviewed said they weren't willing to break the law to use the 
drugs on their children.

Berwick mother Heather Bowie's son Aidan, born with neurological 
impairments, has about 20 seizures a day and is now trying his 
seventh medication to treat seizures. She can't leave the house, let 
alone the state, without his medications.

"The legal component is huge for me," she said. "I am not going to 
cross that line, because ultimately I am no help to Aidan behind bars."

Shake has petitioned President Obama and Maine's congressional 
representatives to remove pot from the list of Schedule 1 drugs. 
(U.S. Rep. Chellie Pingree was one of 16 co-sponsors of HR 499, the 
Ending Federal Marijuana Prohibition Act of 2013, which would have 
declassified marijuana as a controlled substance, but the bill went 
nowhere this session. Pingree is married to S. Donald Sussman, 
majority share owner of MaineToday Media, which publishes the 
Portland Press Herald/Maine Sunday Telegram, Kennebec Journal and 
Morning Sentinel.) In 2009 the American Medical Association called 
for a federal review of that categorization in order to facilitate 
research and development of medicinal marijuana.

The Food and Drug Administration has approved trials of cannibidiol, 
including one on a U.K. company's pharmaceutical version of a 
high-CBD medicine that the Patricks' neurologist in Boston, Dr. 
Elizabeth Thiele, is working on. There is no room for Addy in that 
study, but her mother said Dr. Thiele gave her the go-ahead to give 
dispensary medicinal marijuana a try. "She told me, 'It's wicked 
safe,' " Patrick said.

But at the same time, she is adamant that she doesn't want to treat 
her daughter with "just anyone's backyard grow." From their position 
at the forefront of the treatment, the Stanley brothers and their 
foundation, Realm of Caring, seem reliable to her; they test their 
product through both an in-house and third-party lab.

In Maine, at least one dispensary already has an in-house lab and 
others are adding them. The state tests medicinal marijuana regularly 
but only to make sure it is free of contaminants like mold or 
pesticides. Maine doesn't test for potency, and Smyrski said that is 
unlikely to change. "I can't imagine that this administration would 
think that would be the way to go," she said.

Without a third-party lab, Maine parents who want exact science are 
in an "untenable situation," said Becky DeKeuster, executive clinical 
director of the Wellness Connection of Maine, a network that operates 
half of the state's legal medical marijuana dispensaries. She 
believes Maine growers will come up with the right strain for these 
young patients, but "we're talking years, not months" before it is ready.

Maine Organic Therapy in Ellsworth is offering a strain called 
Canna-tsu, which it has tested in an in-house lab at about 6.66 
percent CBD and 5 percent THC. "We would love to even drop the THC 
even lower," said manager Gretchen McCarthy, "to get it down to close 
to 0 percent. But we are not quite there."

And so Meagan Patrick will board a plane to Colorado on Monday, with 
her sick, sleepy little girl and without regrets.

"If they were growing something on Mars that might help my daughter 
I'd be in the backyard building a spaceship," she said.



What is CBD? Cannabidiol is a nonpsychoactive component of the 
cannabis plant. It has been shown to have a sedative effect and 
repress convulsions and seizures. It can increase appetite, fight 
nausea and act as an anti-inflammatory.

What is THC? Tetrahydrocannabinol is the primary psychoactive 
component in the cannabis plant. It is what causes hallucinatory 
effects on the brain and produces the classic "high."

What makes high-CBD marijuana different? Charlotte's Web, the 
high-CBD strain from Colorado, is 17 percent CBD, and only 0.05 
percent THC. Maine growers say they've managed to get CBD levels as 
high as 8 percent, but the THC remains about 5 percent. For 
perspective, the average THC content of pot in 1980 was 2 percent, 
according to a Mayo Clinic study. By 1997, the average THC content of 
pot had more than doubled and by 2006 it was 8.55 percent.

Is the high-CBD strain more expensive than other medical marijuana? 
No. Canna-tsu, the 6.66 percent CBD strain Maine Organic Therapy in 
Ellsworth is selling, is no more expensive than other medical 
marijuanas; a 2-ounce tincture, which lasts the average patient two 
weeks, costs $50. But the Patrick family expects to pay between $300 
and $500 a month for Addy's treatment in Colorado. That's more 
expensive than her pharmaceutical medications, but primarily because 
those meds are covered by insurance and the Patricks will pay out of 
pocket for the Charlotte's Web.


Q How do parents get marijuana for children?

A: : The state certifies minors for the same conditions it does 
adults, which range from cancer to glaucoma and include seizures 
characteristic of epilepsy. Parents ask their physician to evaluate 
their minor child and make a recommendation that the child be 
certified for medical marijuana. The physician makes a referral to 
Maine's Department of Health and Human Services. An independent 
physician contracted by the state then has 10 days to render an 
opinion. This recommendation is returned to the consulting physician 
for further consideration and discussion with the parents. According 
to DHHS, about 20 to 25 petitions from minors are considered annually 
and about half of those are approved.

Q Do they smoke it?

A: : No, they don't have to and rarely would. But that's a common 
misconception. Berwick mother Heather Bowie, who is researching the 
treatment for her 12-year-old son, Aidan, said when she first heard 
of medical marijuana as a means to treat his epilepsy, her first 
thought was that her disabled son couldn't smoke. She didn't know yet 
about tinctures, where the drug is suspended in liquid and can be 
mixed into food, placed under the tongue or even rubbed into the skin.

Q Will they get high?

A: : Not if they're using a plant high in CBD and extremely low in 
THC, the psychoactive component that makes people high. "I also had 
no idea you could just grow out the getting high point," Bowie said. 
"So I wouldn't expect the public to know that and I would expect the 
sidelong glances if we go ahead with it."

Q But what will happen to the children?

A: : Their seizures could lessen - possibly dramatically, possibly 
only slightly. Side effects can include lethargy and improved mood 
and appetite. The long-term effects of giving medical marijuana to 
children are not yet known.
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