Pubdate: Sun, 13 Apr 2014
Source: Washington Post (DC)
Page: C1
Copyright: 2014 The Washington Post Company
Author: Tom Jackman


'My Biggest Fear Is That the Medicine Will Work and My Family Will Be
Split Up'

For the parents of children with intractable epilepsy, the stream of
constant seizures, emergency-room visits and powerful medications can
become a demoralizing blur. Beth Collins of Fairfax County said her
teenage daughter suffered as many as 300 epileptic seizures per day.

"There were days when I just laid in bed with her and prayed," Collins
said, "and watched her because I wasn't sure what would happen."

Now, the seizures have all but stopped. Each day, Collins gives her
daughter Jennifer a dose of medical marijuana oil from a syringe, as
any parent might administer liquid medicine to a child.

But Collins can't offer the cannabis extract from her kitchen in
Fairfax, where she raised Jennifer for 14 years. Instead, she does so
in a small two-bedroom apartment in Colorado Springs. Collins is one
of a pair of Northern Virginia mothers and daughters who, after trying
various combinations of drugs and treatments for their children, have
packed up and moved recently to Colorado to try medical marijuana oil
to battle the children's debilitating seizures. Because Virginia law
does not allow for the sale of medical marijuana or its extracts, the
families have elected to move 1,700 miles so their children can have a
chance at a normal life.

"I feel a lot better," Jennifer said of the treatment, which is
scientifically untested. "I can focus more, I'm doing better on tests
in school. My memory's improved a lot." Her seizures are "not
completely gone," but her mother said that "we've had days where I've
seen very few, maybe one or two. That's a major decrease."

Former South Riding resident Dara Lightle has watched her 9-year-old
daughter move from not only seizures, but also "unbelievable anger,
kicking and screaming at me" to reading for the first time and
discarding all other drugs. "We're grateful to be here" in Colorado,
Lightle said, although she considers herself and daughter "medical

The Northern Virginia families' efforts are part of a growing national
migration toward the seemingly life-changing marijuana oil. More than
100 families have moved to Colorado Springs in recent months to obtain
the oil, and mothers have launched lobbying efforts in many states to
legalize medical marijuana for conditions such as epilepsy.

Meanwhile, other Virginia families watch with envy, unable to uproot
their families but hopeful that the Old Dominion will consider a
change in its marijuana laws, at least for this oil - which has
marijuana's intoxicating ingredient, THC, removed - and this
condition. Virginia has long been reluctant to consider legalizing
medical marijuana, and previous pushes for legalization in the General
Assembly have quickly died.

But now supporters have a new, important ally: recently elected Lt.
Gov. Ralph Northam (D), a pediatric neurologist who has treated
children with epilepsy for years. He said in an interview that he is
going to help craft legislation next year that would allow certain
Virginia residents to use medical marijuana for epilepsy, although he
acknowledges that scientific research has not caught up with the
glowing anecdotal research emerging from Colorado, where medical
marijuana has been legal since 2000.

Northam said that a British company, GW Pharmaceuticals, has been
approved for a study in the United States using a cannabis extract for
patients with Dravet syndrome, a particularly severe form of epilepsy.

"The bottom line is to do something, through the studies or
legislatively, to help these families," the lieutenant governor said.
"If we go before the legislature and have these families come in and
testify, I really think we could get that passed and get help for
these families. I'm going to do a bit more research and we'll put the
language together" for next year's legislative session.

The Virginia General Assembly may be a tough sell. Del. Robert G.
Marshall (R-Prince William), who has pushed a bill repealing
Virginia's already restrictive 1979 law permitting possession of
marijuana for medical purposes, said those who support cannabis for
epilepsy should go through the established scientific testing process
required for other drugs.

"They are taking homemade remedies and asking the legislature to
bypass those" testing procedures, he said. "It may curtail seizures in
the short term in kids, but to do these experiments on kids, in the
absence of science, I question that. Go to the FDA and go through the
regular process."

Parents who have endured years of epilepsy's consequences -
particularly those who have children with Dravet syndrome, which can
be fatal at any time - feel that they don't have time to wait for the
FDA's process. A lack of assistance from the federal government has
complicated matters for these families. The Food and Drug
Administration, which must approve any legal use of medical marijuana,
says it "requires carefully conducted studies in large numbers of
patients (hundreds to thousands) to accurately assess the benefits and
risks of a potential medication."

It recently gave approval to GW Pharmaceuticals for testing of the
cannabis extract-based drug Epidiolex for both Dravet and
Lennox-Gastaut syndromes, two severe forms of epilepsy, and the
company hopes to work with doctors and patients to perform clinical
trials in the United States this year.

Officials with the FDA, the Drug Enforcement Administration, the
National Institute on Drug Abuse, and the Office of National Drug
Control Policy all declined to discuss the government's position on
marijuana oil or relaxing restrictions on marijuana for research purposes.

But even in the epilepsy community, there is a debate about whether
using the extract is appropriate. In February, the Epilepsy Foundation
released a position paper calling for an end to DEA restrictions on
clinical trials and research and asking the agency to allow greater
access to medical marijuana oil for the 1 million Americans who have
uncontrolled epileptic seizures.

"People with uncontrolled seizures live with the continual risk of
serious injuries and loss of life," Epilepsy Foundation leaders Philip
M. Gattone and Warren Lammert wrote. "If an epilepsy patient and their
doctor feel that marijuana is the best treatment option then they need
to have safe, legal access to medical marijuana and they need that
access now."

A week after the Epilepsy Foundation released the statement, the
American Epilepsy Society issued a contrasting view cautioning that
"we must remember that these are only anecdotal reports, and robust
scientific evidence for the use of marijuana is lacking . . . use of
marijuana for epilepsy may not be advisable due to this lack of
information on safety and efficacy."

Experts, state legislatures and the federal government continue to
wrangle with the issue, but parents say they are left with a single,
desperate option: Move to Colorado. In many cases, they have connected
with Realm of Caring, a group started by a family who developed the
"Charlotte's Web" low-THC plant and the oil, which is rich in
cannabidiol, or CBD, according to Heather Barnes-Jackson, the group's
executive director. The plant is named for Charlotte Figi, who began
taking the CBD oil (also called "Realm Oil") at 5 as a last resort and
sawa drastic reduction in her violent grand mal seizures. Research has
showed that CBD has anti-inflammatory, neuroprotectant and antioxidant
properties through its interactions with the brain and the body,
Barnes-Jackson said.

In Colorado Springs, 206 people are using the Charlotte's Web extract,
Barnes-Jackson said. They include her son, who has "catastrophic" epilepsy.

And now the Virginia families are joining a growing group of families
setting in Colorado. Indeed, the parents came from nearly identical
backgrounds: dubious of medical marijuana, frustrated by the
ineffectiveness of FDA-approved drugs and feeling that they had no
other options.

"My child is not going to smoke pot," Lightle said she remembers
thinking. But she also endured such stress from her daughter's
deterioration that she got panic attacks. "I'm a mother, realizing I
couldn't protect my child," she said. "It really shows how hard this
is on a parent, too."

Lightle's daughter Madeline began having seizures at 6, including
during 80 percent of her sleep. Strict diets worked for a time, then
became ineffective, as did each new medication. Her vision got worse
because of the seizure medication, doctors told her. Doctors even
suggested a hemispherectomy, in which a large part of the brain is

So Dara and Madeline Lightle left South Riding in October.

"By the grace of God," Lightle said, "we were able to wean her off all
pharmaceuticals by the end of December. She's had three seizures in
the past 13 weeks. Before, she would have multiple seizures, five in a
day." On Facebook, she posted before-and-after electroencephalograms
of Madeline that are drastically different.

But moving from home has taken its toll on Jennifer Collins, who was
an eighth-grader at Robinson Secondary School. She wrote a letter to
Virginia legislators that her mother recently delivered: "My family is
totally split up and it's killing me," she wrote. She asked the
legislators to imagine "your little girl going off to Colorado with
her mom because she has no other medical options but you have to stay
here so you can afford all of it ... wouldn't that be hard on your

Meanwhile, in Ashburn, Cady Coe is preparing to move her three
children to Fort Collins, Colo., this summer. Her youngest, 9-year-old
Charlie, has tried 17 types of medications and numerous diets.

"He has not had a day seizure-free since he was 3," she said. "He
weighed more at age 3 than at age 9."

But not everyone can move. Lisa Smith, a Northern Virginia native now
living on the Northern Neck with her husband and three children, said
her 13-yearold daughter, Haley, has Dravet syndrome and suffers 100
seizures per week. As a toddler, Haley was treated by Northam, and the
pair reconnected when Northam was on the campaign trail.

Lisa Smith said Northam was encouraging when she spoke to him about
medical marijuana, and now she is lobbying the General Assembly as
part of Virginia Parents for Medical Marijuana. But moving to Colorado
is not an option.

"It's not really the time you pick up and go," Smith said. "I have a
whole support system here, a whole lot of medical professionals she's
involved with." Relocating is "very drastic. We would if we had to. If
it's never going to happen in Virginia, we would move."

Collins also has been involved in lobbying, and she returned to
Virginia last month to participate in an epilepsy walk in the District
with like-minded parents. She is not thrilled about staying in
Colorado indefinitely. She wants medical marijuana in Virginia.

"I want to do it legally," she said. "I shouldn't have to break the
law to give medicine to my child. And it shouldn't be dictated by my
Zip code."  
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