May 11, 2009
By Marie Myung-Ok Lee
Question: why are we giving our nine-year-old a marijuana cookie?
Answer: because he can't figure out how to use a bong. My son J has autism. He’s also had two serious surgeries for a spinal cord tumor and has an inflammatory bowel condition, all of which may be causing him pain, if he could tell us. He can say words, but many of them—"duck in the water, duck in the water"—don't convey what he means. For a time, anti-inflammatory medication seemed to control his pain. But in the last year, it stopped working. He began to bite and to smack the glasses off my face. If you were in that much pain, you’d probably want to hit someone, too.
J's school called my husband and me in for a meeting about J's tantrums, which were affecting his ability to learn. The teachers were wearing tae kwon do arm pads to protect themselves against his biting. Their solution was to hand us a list of child psychiatrists. Since autistic children like J can’t exactly do talk therapy, this meant sedating, antipsychotic drugs like Risperdal—Thorazine for kids.
Last year, Risperdal was prescribed for more than 389,000 children—240,000 of them under the age of 12—for bipolar disorder, ADHD, autism, and other disorders. Yet the drug has never been tested for long-term safety in children and carries a severe warning of side effects. From 2000 to 2004, 45 pediatric deaths were attributed to Risperdal and five other popular drugs also classified as “atypical antipsychotics,” according to a review of FDA data by USA Today. When I canvassed parents of autistic children who take Risperdal, I didn't hear a single story of an improvement that seemed worth the risks. A 2002 study specifically looking at the use of Risperdal for autism, in the New England Journal of Medicine, showed moderate improvements in “autistic irritation”—but if you read more closely, the study followed only 49 children over eight weeks, which, researchers admitted, “limits inferences about adverse effects.”
We met with J's doctor, who’d read the studies and agreed: No Risperdal or its kin.
The school called us in again. What were we going to do, they asked. As a sometimes health writer and blogger, I was intrigued when a homeopath suggested medical marijuana. Cannabis has long-documented effects as an analgesic and an anxiety modulator. Best of all, it is safe. The homeopath referred me to a publication by the Autism Research Institute describing cases of reduced aggression, with no permanent side effects. Rats given 40 times the psychoactive level merely fall sleep. Dr. Lester Grinspoon, an emeritus professor of psychiatry at Harvard Medical School who has been researching cannabis for 40 years, says he has yet to encounter a case of marijuana causing a death, even from lung cancer.
A prescription drug called Marinol, which contains a synthetic cannabinoid, seemed mainstream enough to bring up with J’s doctor. I cannot say that with a few little pills, everything turned around. But after about a week of playing around with the dosage, J began garnering a few glowing school reports: “J was a pleasure have in speech class,” instead of “J had 300 aggressions today.”
But J tends to build tolerance to synthetics, and in a few months, we could see the aggressive behavior coming back. One night, I went to the meeting of a medical marijuana patient advocacy group on the campus of the college where I teach. The patients told me that Marinol couldn’t compare to marijuana, the plant, which has at least 60 cannabinoids to Marinol’s one.
Rhode Island, where we live, is one of 13 states where the use of medical marijuana is legal. But I was resistant. My late father was an anesthesiologist, and compared with the precise drugs he worked with, I know he would think marijuana to be ridiculously imprecise and unscientific. I looked at my son’s tie-dye socks (his avowed favorite). At his school, I was already the weirdo mom who packed lunches with organic kale and kimchi and wouldn't let him eat any “fun” foods with artificial dyes. Now, I’d be the mom who shunned the standard operating procedure and gave her kid pot instead.
But then I thought back to when J was 18 months old. We were vacationing on the Cape, and, while he just had the slightest hitch in his gait, I was sure there was something wrong. His pediatrician laughed. I called back repeatedly until a different doctor agreed to see us. J was taken into emergency surgery, to remove a tumor that was on the verge of inflicting irreparable damage. Sometimes, you just have to go with your gut.
And yet, I still hesitated. The Marinol had been disorienting enough—no protocol to follow, just trying varying numbers of pills and hoping for the best. Now we were dealing with an illegal drug, one for which few evidence-based scientific studies existed precisely because it is an illegal drug. But when I sent J's doctor the physician’s form that is mandatory for medical marijuana licensing, it came back signed. We underwent a background check with the Rhode Island Bureau of Criminal Identification, and J became the state’s youngest licensee.
Having a license, however, is different from having access to marijuana. While California has a network of “compassion centers,” basically pharmacy-like storefronts that provide quality product from registered growers, Rhode Island's Republican governor has consistently vetoed that idea, in spite of the local stories of frail patients being mugged in downtown Providence as they go in search of pot. We weren’t about to purchase street marijuana, which could be contaminated with other drugs, so we looked into growing the pot ourselves. But by law, medical marijuana must be grown indoors, and it requires a separate room with a complex system of hydroponics, fans, and precise lighting schedules. (This made me wonder how much THC was actually in the spindly plants the high school goofballs I knew grew in their closets).
The coordinator of our patient group introduced us to a licensed grower. A recent horticulture school graduate, he'd figured out how to cultivate marijuana using a custom organic soil mix. His e-mail signature even quoted Rudolph Steiner. The grower arrived at our house with a knapsack containing jars of herbs. We opened the jars to sniff the different strains of “bud”—Blueberry, which did smell fleetingly of wild blueberries, and Sour Diesel, which had a rich, winey scent. The grower also had cured some leaves for tea, and he brought a glycerine tincture, a marijuana distillate in olive oil (yes, organic), cookies (ditto), and a strange machine that looked, fittingly, like a lava lamp. Basically an almost-bong, this vaporizer heated the cannabis without producing carcinogenic smoke.
For most adults, the vaporizer is the delivery method of choice, as it allows the patient to feel the effects immediately and adjust the dose precisely. J gamely put his mouth on the valve and let us squeeze a little smoke into him. It shot right back out his nose. He looked like Puff the Magic Dragon.
The grower left us with a month’s worth of marijuana tea, glycerine, and olive oil—and a cookie recipe. No buds. We paid $80. (Granted, we haven’t checked up on how much a nickel bag costs these days.)
We made the cookies with the marijuana olive oil, starting J off with half a small cookie, eaten after dinner. J normally goes to bed around 7:30 p.m.; by 6:30 he declared he was tired and conked out. We checked on him hourly. As we anxiously peeked in, half-expecting some red-eyed ogre from Reefer Madness to come leaping out at us, we saw instead that he was sleeping peacefully. Usually, his sleep is shallow and restless. J also woke up happy.
But in a few days, J decided he didn't like the cookie anymore and smashed it with his fist. We brewed him the tea, which smelled funky and grassy. He slurped it down, but without much effect. Many of the psychoactive compounds in marijuana are fat soluble, so I added a dropperful of the oil that we used in the cookies. That made him sleepy-looking but still aggressive. It became clear that when J ingested pot orally, it took two hours to see the results, and by then there wasn't much we could do to dial the dose up or down. The grower visited us again to give J another try at the bong, with little success.
But it was also possible that J needed a little time to get off the Marinol. After two weeks, we noticed a slight but consistent lessening of aggression. And he wasn't nervously chewing holes in his shirts.
We are now a month or so into this, and it’s still too early to know if we can find a dose and mode of delivery that gives us consistent results. Even if J could learn to use the vaporizer, it costs $600, and would leave the house reeking of pot. And we don't want to get too dependent, because of the inherent limitations. Though we’d love to calm J with pot so that he can visit his grandmother in Minnesota, bringing a controlled substance on the plane isn't the best idea.
But since we started him on his "special tea," J’s little face, which is sometimes a mask of pain, has softened. He smiles more. For the last year, his individual education plan at his special-needs school was full of blanks, recording “no progress” because he spent his whole day an irritated, frustrated mess. Now, April’s report shows real progress, including “two community outings with the absence of aggressions.”
The big test, so far, has been a visit from Grandma. The last time she came, over Christmas, J hit her during a tantrum. This time, we gave him his tea, mixing it with goji berries to mask any odor, although it occurs to me that my mother, a Korean immigrant, probably doesn’t even know what pot smells like (and it actually smells a lot like ssuk, a Korean medicinal herb). She remarked that J seems calmer. As we were preparing for a trip to the park, J disappeared, and we wondered if he was going to throw one of his tantrums. Instead, he returned with Grandma’s shoes, laying them in front of her, even carefully adjusting them so that they were parallel and easy to step into. He looked into her face, and smiled.
When I think of the embarrassment I may feel if my colleagues see this article, or teachers or parents at J’s school, or his less open-minded doctors, I pause. Although I occasionally smoked pot as a teenager (believe me, in northern Minnesota, there was not much else to do), now that I'm a law-abiding adult, all the scary anti-drug messages are flashing in my brain. But when I researched cannabis the way I did conventional drugs, it seemed clear to me that marijuana at the very least wouldn’t harm J, and might help. It's strange, I've come to think, that the virtues of such a useful and harmless botanical have been so clouded by stigma. Even the limited studies that have been done suggest marijuana's potential as an adjunctive therapy for cancer. Marijuana, you need some rebranding. Maybe a cool new name.
Meanwhile, in treating J with pot, we are following the law—and the Hippocratic oath: primum, non nocere. First, do no harm. The drugs that our insurance would pay for—and that the people around us would support without question—pose real risks to children. For now, we’re sticking with the weed.