Pubdate: Fri, 06 Jan 2017
Source: Washington Post (DC)
Copyright: 2017 The Washington Post Company
Author: Marie Myung-Ok Lee


It took me awhile to perfect the cookie recipe. I experimented with
ingredients: Blueberry, Strawberry, Sour Diesel, White Widow, Bubba
Kush, AK-47 -- all strains of cannabis, which I stored, mixed with
glycerin, in meticulously labeled jars on a kitchen shelf. After the
cookies finished baking, I'd taste a few crumbs and annotate the
effects in a notebook. Often, I felt woozy. One variation put me to
sleep. When I had convinced myself that a batch was okay, I'd give a
cookie to my 9-year-old son.

At the time he was consumed by violent rages. He would bang his head,
scream for hours and literally eat his shirts. At dinnertime, he threw
his plates so forcefully that there was food stuck on the ceiling. He
would punch and scratch himself and others, such that people would
look at the red streaks on our bodies and ask us, gingerly, if we had

But when I got the cookies right, he calmed down. His aggressions
became less ferocious and less frequent. Mealtimes became less
fraught. He was able to maintain enough self-composure that he even
learned how to ride a bike -- despite every expert telling us it would
never happen.

I realize that some people may look askance at parents who keep pot in
the house, let alone conduct semi-legal medical experiments on their
children. But it's time we reexamine the cultural and legal
restrictions we put on cannabis, especially as it pertains to kids. My
son's life has changed because of it.

Since he was an infant, I'd watched my son struggle. At 18 months, he
underwent two major spinal-cord tumor surgeries, only weeks apart, and
was immobilized in a cast for a year. After that, the violent rages
began -- sometimes as many as 300 in a day.

My husband and I didn't understand why he acted this way until he was
diagnosed at age 3 with a gut disease that left him in pain for most
of the day and severe autism that made it difficult for him to express
himself or ask for relief.

We tried all kinds of treatments, including applied behavior analysis
(the supposed gold standard in autism therapy), occupational therapy,
horse therapy and auditory integration. We even got him a session with
Soma Mukhopadhyay, a celebrity in the autism world, whose Rapid
Prompting Method has helped some people learn how to communicate by
pointing instead of vocalizing. By the time he was 5, our son was in a
special school and on a hypoallergenic diet. His gastroenterologist
prescribed powerful anti-inflammatories, which left him vulnerable to
violent episodes triggered by, say, hearing a dog bark 100 feet away,
but stopped the worst head-banging: on our cast-iron tub.

Then, a couple of years later, the medication stopped working. And his
aggressions exploded.

His school insisted he see a psychiatrist, who recommended the drug
Risperdal to treat his "autistic irritability." I was reluctant.
Adults taking Risperdal often refer to it as a "chemical lobotomy." In
kids, there are also reports of alarming weight gain and sleepiness.
Additionally, back then I could find only one study on the
medication's use in children with autism. It tracked 49 children who
took the drug for eight weeks to six months -- hardly long term -- and
showed uneven results on behavior, with side effects including an
average weight gain of six pounds in the eight-week period, elevated
insulin levels and tremors. My husband said he'd rather our son attack
us every day than suffer through that. But the school was calling us
weekly, demanding that something change.

I was desperate and frantic. It seemed like I'd run out of options.
Then I happened upon a paragraph in Michael Pollan's "The Botany of
Desire." Pollan argued that cannabis is great for pain relief and can
slow short-term memory formation. Might this, I wondered, help
mitigate my son's pain and the onslaught of sensory input that he
struggled to process?

To research this question, I dropped in on a medical-marijuana patient
group that met at Brown University, where I taught. The collection of
severely ill patients couldn't have been further from the giddy stoner
convention I'd imagined. One after another spoke of the healing
impacts of cannabis. A young man with crippling anxiety and Tourette's
syndrome said a slew of psychiatric drugs couldn't quell his
outbursts, but pot did. It wasn't a cure. But it helped.

I came away convinced that marijuana was worth a try. After weeks of
back and forth, my son's neurologist agreed. And so, at age 9, my son
became the youngest person with a medical-marijuana license in Rhode
Island. We found a certified supplier. Then, we got busy figuring out
which type of marijuana would best work for him and how to get him to
ingest it.

The first days were overwhelming. The grower would show up with six or
more strains. And I was terrified of doing something wrong. But Lester
Grinspoon, a psychiatrist and professor at Harvard Medical School who
has been researching cannabis since the 1960s, reassured me that the
worst we could do was make our son fall asleep. Of course, paranoia is
another cliched side effect of marijuana, but Columbia University
neuroscientist Carl Hart, who has administered marijuana to thousands
of research subjects, notes that paranoia wears off within hours.

Indeed, cannabis is one of the few substances on earth that can't kill
you. It was classified as a Schedule 1 drug under the 1970 Controlled
Substances Act, suggesting the potential for abuse, a concern about
safety and the absence of an accepted medical use. But subsequent
research has shown that cannabis is not physically addictive, as many
illicit drugs are, and that it could make life better for people with
a range of ailments, such as Tourette's, irritable bowel syndrome,
anxiety, glaucoma, spasticity, Huntington's disease, chronic pain and
intractable epilepsy. And the safety concerns have turned out to be
unfounded. "Nearly all medicines have toxic, potentially lethal
effects," a Drug Enforcement Administration administrative judge wrote
in 1988. "But marijuana is not such a substance. There is no record in
the extensive medical literature describing a proven, documented
cannabis-induced fatality." So even parents who might not have my
penchant for methodical experimentation would have little to fear in
using it to treat children like mine.

For my son, not every strain of cannabis helped. When we did see
positive effects, they were often accompanied by red eyes or an
unwillingness to do anything ("couch lock," it's casually called). But
eventually, we settled on White Russian, a favorite of cancer patients
in pain, and we transitioned from cookies to an oil tincture that my
son received orally every few hours with a dropper. (That allowed us
to titrate the dosage and made it easier for the nurse to administer
at school.) It left him clear-eyed and alert, without the constant
pain-furrow in his brow or the off-the-wall rages.

It seemed like a miracle. And seven years later, it's still working.
But unlike with other wonder drugs, we can't just pop into the
pharmacy for refills.

Growers come and go, and their supplies are always just one mite
infestation or robbery or legal scare away from disaster. My son's
original provider, who had put a lot of his own money into making an
indoor grow-room for our son's plants, was robbed and dropped out of
Rhode Island's medical-marijuana program. Another certified grower
accidentally killed his plants. Not long after, another certified
provider we used called us in a panic. He was being evicted because
his landlord was getting anxious about his organic-marijuana
operation; pot, though legal under state law, is still federally
illegal to grow, possess or ingest. (Licensed medical-marijuana
patients and providers have ended up in prison, even while OxyContin,
a powerful Schedule 2 drug, is legally prescribable for children.)

Once, when my son was late getting his cannabis oil after school, he
put his head through a window and cut his face in a frenzy of pain. We
gave him his medication, and he calmed down enough that we could bring
him to the ER. But at the hospital, I didn't know whether to admit
that we'd given him cannabis. Would I be arrested? Would they call
social services?

Things got even more complicated when we sold our house in Rhode
Island and moved to New York full-time in 2015. Eighty-two percent of
New York voters support medical marijuana, according to polls. But the
state's newly implemented medical-marijuana program is absurdly rigid.
While other states include autism on their lists of qualifying
conditions, New York does not consider glaucoma, much less autism, a
sufficient qualification, and physicians have to take a time-intensive
course to become certified to prescribe. We left Rhode Island with
almost a liter of cannabis-infused oil, but, even though we measure it
out in drops, it won't last forever. And because my son had to turn in
his medical-marijuana license when we moved, we can't go back to get

The lone dispensary that serves all of Manhattan was, when we walked
by one recent weekday, empty of patrons. Contrast this with Denver. In
2014, I visited Medicine Man , a medical and recreational dispensary
on the outskirts of the city that was so crowded, I had to wait in
line with about a dozen other people. I was amazed by the diversity of
cannabis available, the wide variety of strains, and the mesmerizing
display of tinctures, edibles, even topical creams for muscle pain.
Trained workers were on hand to answer any questions. I wanted to cry,
thinking that I could buy bags of White Russian but I wouldn't be able
to take them out of Colorado. If we bring our son's marijuana when we
travel, we worry that we're committing interstate drug

This subterfuge, the stigma, the fear and the work required to find a
steady supply of the right plant prevent more families with kids in
crisis from trying medical marijuana. Even parents sent along by our
son's neurologist, who has been amazed by his transformation, have
concluded that it's all too much for them.

Removing these barriers would be as simple as removing cannabis from
Schedule 1, as several high-profile leaders, including the governors
of Washington and Rhode Island, have urged. I was optimistic that
President Obama would do it. After all, he is an admitted onetime
recreational user, who told the New Yorker that marijuana is less
dangerous than alcohol and who's said that science guides his
decisions on policy. But the DEA sidelined science when it rejected
reclassification in August. "This decision isn't based on danger," DEA
chief Chuck Rosenberg said. "This decision is based on whether
marijuana, as determined by the FDA, is a safe and effective medicine,
and it's not."

In the remaining weeks of his presidency, Obama could still instruct
Attorney General Loretta Lynch to remove it from the schedule, leaving
a legacy of marijuana patients and their providers who would be
protected under the law.

President-elect Donald Trump has said little about cannabis, other
than it "should be a state issue ." That doesn't bode well for federal
declassification. And some observers predict that Jeff Sessions,
Trump's pick for attorney general, may go to war on legal marijuana.

What are my choices, then, as a law-abiding parent, when my son's
cannabis oil runs out? The look of joy and pride on his face as he
rides, same as other kids with their families, on a beautiful
waterside bike path in New York is glorious to see. He shouldn't have
to go back to days of howling pain and self-injury.

Marie Myung-Ok Lee is a novelist and essayist who frequently writes 
about science. She teaches at Columbia University.
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