a little weed

Having not had much of a history with it, in the year leading up to my father’s death during his prolonged battle with cancer, I smoked a little weed nearly every night. It relaxed me, lifted the load a bit. At times it helped my mind wander to more pleasant thoughts, while at others it allowed me to sink into my grief: something I found essential to coping with the gradual loss of him. He’d been fighting the disease for years, chasing it with regular bouts of chemotherapy which wasted him away by the pound until he was little more than a six-foot-four rack of bones. Near the end, to help alleviate his pain, he was high—or should I say low—on morphine much of the time. I barely recognized him, his eyes like black saucers staring into oblivion, his skin bland and puffy, his countenance flat. I'd recommended to my mother that dad try eating some weed to help relieve his pain and nausea and, surprisingly, she'd considered it, though he died before we had a chance to try.

When I smoked pot I never felt dizzy or headachy or nauseous. I had no trouble with coordination or balance, no double-vision, no vertigo, no tingling, no pain, no weakness, shortness of breath or loss of appetite. I wasn’t aggressive or agitated or irritable or anxious. I was simply relaxed and perhaps, at times, a little sleepy. And when I stopped smoking it after my father died, I suffered zero withdrawal.

Since eliminating one of Calvin’s three antiepileptic medications, rufinamide (Banzel)—one that didn’t appear to be effective and was causing him extreme hyperactivity—he’s had an increase in seizures to the point of occurring nearly every week. A relatively new drug, rufinamide was studied on a small group of children with Lennox Gasteau Syndrome (LGS) so its addictive nature remains unclear. But after its elimination, when Calvin suffered his first nighttime seizures in years—back to back—I panicked and increased one of his other two meds hoping to keep the seizures at bay. So far we’ve seen no benefit, rather a child who is bouncing off of the walls seemingly due to the increase in benzodiazepine (clobazam).

If the seizures don’t abate, we have three choices. We can do nothing and hope they don’t worsen, which is unlikely since epilepsy is a progressive disorder. We can add a third drug back into Calvin's regimen, which will most assuredly cause him to suffer some combination of worsening headaches, dizziness, gait ataxia, double vision, blurred vision, fatigue, vertigo, tremor, somnolence, aggression, agitation, hallucination, insomnia, psychotic disorder and pruritus, to name a few. Or, we can make good in our quest to find the right strain of medical marijuana for our little lamb, one that has a high cannabidiol (CBD) content and a low tetrahydrocannabinol (THC) content so that he won't get high. But if we choose that route, because of federal law we'll find ourselves trapped within the borders of the state of Maine living in fear of any future diehard administration that might sweep in and outlaw its use. If any tincture of this plant were to reduce or control Calvin’s seizures to the extent we could lessen or eliminate his pharmaceuticals—like it did for Charlotte Figi—if it were taken away Calvin could suffer a prolonged and lethal seizure.

So, we remain boxed in by seizures, shackled by pharmaceuticals and crippled by priggish, deceptive, propagandized laws about medical marijuana—a plant known to save the lives of children who have catastrophic epilepsies and shows evidence in helping conditions such as autism, arthritis, cancer, Alzheimer's, Parkinson's, MS, migraine and diabetes. So you can see why I'm determined to help change this harsh landscape which is epilepsy. All it might take is a little weed.

Dr. Sanjay Gupta joins Josh Stanley at the Realm of Caring in Colorado