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When my son Calvin was two, he suffered a forty-five minute seizure. The emergency medication that the hospital staff had administered seemed to be having no effect. In my research of epilepsy I had read that the longer a seizure lasts the harder it is to stop, so my husband Michael and I, fearing Calvin’s impending death, sat helplessly at his bedside kissing him goodbye. Seconds later, the seizure stopped.
In the eight years since his diagnosis, Calvin, who was born missing a significant amount of the white matter in his brain, has tried nine different antiepileptic drugs (AEDs)—at times as many as four at once—plus two rigorous dietary therapies. None have stopped his seizures. The seizures and the drugs impede his development and the drugs cause heinous side effects such as headaches, nausea, poor coordination, irritability and cognitive blunting to name just a few.
Some of the drugs have not been tested on children, others can have lethal side effects, while still others are addictive and can disturb memory, behavior and learning. It sickens me knowing that my ten-year-old’s brain is constantly awash in a drug related to Valium, plus a high dose of another AED, yet his seizures, which can last as long as five minutes and cause him to stop breathing, persist. Having tried and failed so many pharmaceuticals, the chance that a subsequent one will stop Calvin’s seizures has dwindled to almost nothing.
A little over a year ago, in desperation, I began researching cannabis for the treatment of epilepsy. I read about a five-year-old girl from Colorado, Charlotte Figi, who’d had near miraculous results treating her catastrophic epilepsy using an oil made from cannabis. Then I read of another similar child, and another, and another.
Their stories astonished me, so I asked Calvin’s neurologist her opinion. She dismissed the idea, saying that there was no solid evidence as to cannabis’ safety or efficacy. I took Calvin to see another neurologist. He echoed her misgivings. I then went to Calvin’s pediatrician who, since Calvin was a neonate, had been holding our hands through near constant complications and heartache. A few days after our conversation, having never done so, she promised to issue Calvin a certificate to use medicinal cannabis to treat his epilepsy.
Over the next several months I read, researched, and contacted other moms who were using cannabis oil for their kids. I spoke with dispensaries, caregiver growers, marijuana advocacy groups and specialists in making the oils. I learned that the strain of cannabis that was helping the kids in Colorado, one high in CBD (cannabidiol) and low in THC (tetrahydrocannabinol) was not available in our state of Maine. To get it, I’d first have to find it, or one similar, in a nearby state and bring it back to be grown, thereby breaking the law. Otherwise, I’d have to uproot my family and move to Colorado, or order it online and risk getting one processed with pesticides or mold, risk a breakdown in supply, risk not knowing its exact contents, its consistency or its handling, all risks I was unwilling to take.
Instead, I began conversations with a Sacramento man about how to make an oil using a strain of cannabis readily available in Maine, one high in THC. There is evidence that cannabis oils high in the raw, acidic, non-psychoactive form of THC, called THCa, are helping children with epilepsy in Australia and in the States. Since, with each passing day Calvin was outgrowing his AED doses, and since I wanted to avoid subjecting him to another, I felt compelled to start him on a cannabis oil, ASAP. Until the high CBD strains, which at some point during my research had been anonymously brought into Maine, would be ready to flower abundantly enough to afford a consistent supply for making oils, I’d have to make a THCa oil myself; no dispensaries were making it.
At first, the process intimidated me, but my husband, a professional photographer who deals daily with chemicals and precise measurements, offered to help. This eased my angst. I began ordering supplies on the internet: organic grain alcohol, nylon filtration bags and screens, amber dropper bottles, MCT oil, canning jars and scrapers. As the supplies started appearing in boxes on my doorstep, I began examining the recipe in preparation for making the oil.
It was easier than I thought, simple enough to do by myself. After sterilizing the equipment, I crushed and froze the dried bud, then measured out the grain alcohol and froze it separately. The next day I poured the grain alcohol into the jar of crushed bud letting it stand for thirty minutes before straining it through a stainless steel sieve, then again through a nylon mesh bag. I froze the clear green liquid, which resembled lime Kool-Aid, for at least a day before straining out the frozen layer of chlorophyll. I transferred the liquid into a glass baking dish, covered it with an air filter, put it in our dark basement beside a fan and waited for it to dissipate. After a day or two the liquid had evaporated leaving a film of sticky, golden resin, which I scraped up using a couple of sharp, flat blades.
In the end I had extracted 4.3 grams of resin from one ounce of dried cannabis. To every gram of resin I added 30 milliliters of MCT (medium chain triglyceride) oil, which is derived from coconuts and is a perfect substrate for the resin. Once dissolved into suspension, we were able to give Calvin a couple of tiny drops, ensuring we were starting at a low dose and allowing us to adjust slowly and precisely without giving him any more than he might need.
Calvin has been taking the cannabis oil for a little over a month. Almost immediately, we saw improvements in his sleep, his behavior and his focus. It is still too early to know if it is helping to thwart his seizures, but the three he has had since starting the oil have been slightly shorter than average.
We’re monitoring Calvin’s AED blood levels to see if the cannabis oil might be interacting with them, perhaps causing them to become more toxic. If it is, we plan to reduce one of Calvin’s AEDs slightly. Our hope is to be able to wean him off of some, if not all, of his pharmaceuticals. We might have to experiment with different strains until we find success, perhaps with a high CBD strain when it becomes available here in Maine, which should be soon, but that would be no more problematic than experimenting with different AEDs, which neurologists do all the time.
Some physicians say cannabis therapy is unsafe, untested. They fail, however, to admit the widespread uncertainties of how current pharmaceutical anticonvulsants work, how they affect children, how they interact with other drugs and what their long-term side effects are. They don’t acknowledge the fact that AEDs have countless side effects affecting behavior and mood, learning and coordination, appetite and concentration and can cause significant developmental delays, depression, suicidal ideation and death, while cannabis, which is not known to have caused a single death from overdose, appears safe and effective.
They fail to acknowledge that many children with catastrophic forms of epilepsy, which do not respond to traditional drugs, are debilitated and/or dying from prolonged seizures and toxic levels of drugs when they could have been benefiting from cannabis.
Like everything, though, there is a downside. Federal law still prohibits cannabis and classifies it as a schedule I drug, right beside heroin, claiming it has no medicinal benefit. This means that we cannot legally travel out of state to Calvin’s doctor appointments in Boston, nor can we take Calvin to visit his grandparents in Florida. We live in fear that a subsequent administration might not be as understanding of a patient’s rights regarding medicinal cannabis as is our current one.
Thankfully, people like CNN’s chief medical correspondent, Dr. Sanjay Gupta, is educating and advocating for cannabis use to treat a variety of conditions. Legislators on both sides of the aisle are pushing the Obama administration to deschedule cannabis to free it up for research and broader, legal medicinal use.
In my blog, Calvin’s Story, I like to refer to cannabis oil as liquid gold, adding cheeky comments about the need for weed and for “grass root’s” advocacy. I document our journey through life living with epilepsy and, more recently, I write about our adventures with cannabis.
Michael, hoping always to protect me from disappointment, often tells me that I won’t find a silver bullet to relieve Calvin’s seizures and his suffering. I kiss our boy, thinking that this liquid gold could be our silver bullet, then I remind Michael, “Not if we don’t try.”
Feature image: Christy Shake