5.03.2016

back to the classroom

The students seemed to hold their breaths as I cupped my hands over my face to hide the tears. When I regained my composure, I apologized to the class, and the young man to my left reached out his hand and gently said, "It's okay."

For the third year in a row my friend Hadley invited me to speak to her neurobiology class, a group of thirty college students, many of them majoring in premed. She’d asked me to come talk about epilepsy and about Calvin and to show the students an aspect of neurology other than synapses, neurons and cells. I sat off to the side in the Shannon room of Hubbard Hall, a luxurious space with a high vaulted ceiling and a curved metal chandelier suspended overhead. Hadley and I scooted several brocade loungers and wooden chairs around brown leather sofas, facing them toward a drop-down screen where I projected photographs of my boy who had woken to a grand mal seizure just hours before.

The students filed in slowly, some of them grasping snacks and drinks. From the onset, they seemed alert and engaged as they listened to me describe Calvin’s premature birth, how his brain's lateral ventricles are enlarged, and the various theories neurologists had tossed around about why. Regrettably, I failed to mentioned those theories had since been debunked; to this day, no one knows why my son is missing a hunk of the white matter in his brain. I chronicled Calvin's protracted development, his significant visual impairments, his incontinence, his inability to grasp abstractions or to speak. Then I described his first seizure, our many trips to the ER and the PICU, my dread of ambulance sirens, Calvin’s forty-five minute seizure, my loathing of this thing called epilepsy. I spoke of the ills of anticonvulsant medications, their scores of side effects, their tendency to impede development, their affect on my son’s behavior, on his ability to walk and talk and use a spoon, their paradoxical effects such as hyperactivity and insomnia.

For an hour, I lead the students through the past twelve years, through countless seizures and EEGs, painful blood draws and patronizing docs, through woeful hospitalizations and a litany of drugs and dietary therapies. I tried my best to look into each of their spry faces and saw, sculpted in them, curiosity, sorrow, compassion, empathy and surprise.

It was when I began talking about cannabis that I broke down. When I took my hands from my face and breathed, I was able to squeak, “Cannabis saved our lives.”

I told them the astonishing story of little Charlotte and her mother Paige, who inspired me to try cannabis oil for Calvin. I praised Dave from Epsilon who held my hand while I learned to make Calvin's first oil. I commended the dispensary that supplies our amazing cannabis flower, and applauded the other parents who have helped me blaze this cannabis trail. I mentioned how, since adding a 4:00 p.m. dose of homemade THCA cannabis oil, Calvin has had only one daytime grand mal seizure in over six-hundred days; prior to that, he’d have a grand mal seizure every week or two in the early evening, often in the bath. I went on to explain that Calvin still has seizures, though the grand mals are confined to the night when he is safe in bed, and that it seemed perhaps that the new CBD oil might be helping, too. I emphasized that, since beginning cannabis, we’d been able to safely wean Calvin off of over ninety percent of his wicked benzodiazepine, clobazam, aka Onfi, without a huge uptick in seizures. Benzos, I surmised, should be avoided at nearly all costs, warning that physicians regularly prescribe them—Valium, Onfi, Xanax, Klonopin, Ambien to name a few—for anxiety, insomnia and epilepsy, playing down their downsides and risks of their use, their tendency for addiction, and the dangers of their withdrawal. Later, I added that, for the very worst epilepsy cases, they might be the only option that works.

For the last half hour of class, I fielded a variety of questions. One student wanted to know how often I give Calvin injections, and I understood that I hadn’t made it clear that the cannabis oil I give him by the syringe is oral. Another asked if we were treated differently because of Calvin’s condition, at which point I described splintered friendships, gawking strangers and conceited physicians, all of who, luckily for us, have been the exception not the rule. Her question reminded me of the things people have said like, everything happens for a reason, and I expressed to the class my resentment that someone would believe Calvin was designed to suffer just to serve some unworthy purpose. I went on to endorse advocacy, not just for ourselves or our children, but for other marginalized groups, suggesting that the best anyone can do as doctors or as people is to listen and validate, and if someone speaks of hurt or injustice, we should trust they speak the truth and champion their cause.

Near the end (or perhaps after my talk was over, I can't remember!) one student asked if I knew what the long-term consequences were for using cannabis. I said that I didn’t, but that I’d read that THC might harm the developing brain. I countered by saying that all anticonvulsant pharmaceutical drugs are sedatives that slow the brain and, in turn, can hinder development, and that my guess is that pharmaceutical drugs have done more to halt my son's progression than the seizures themselves. I scorned the medical community’s skepticism of cannabis, the complaints of the lack of randomized double-blind placebo-controlled studies to prove cannaibis’ safety and efficacy, the fear of cannabis’ psychotropic effects.

“All anticonvulsants can have psychotropic effects and can affect development,” I said, scoffing at the double-standard to which cannabis is often held, and adding that many anticonvulsants are not studied on children, yet neurologists prescribe them nonetheless.

The same student then asked, if I knew then what I know now, what might I have done for Calvin's epilepsy. Without hesitation, I told her I'd have tried cannabis first, before any pharmaceutical drug, and that I believed it should be a first-line therapy instead of a last resort.

At some point, I mentioned the hypocrisy of the federal government, citing its decades-old medical marijuana program, and its patent #6630507 on certain cannabinoids as neuroprotectants, both which fly in the face of its current status as a Schedule I drug, which asserts that cannabis is as harmful as heroin and possesses no medicinal properties.

I ended with some statistics, how as many as 50,000 Americans die every year from epilepsy or related causes such as drowning, how one in twenty-six people will be diagnosed with epilepsy at some point in their lives and how, even so, epilepsy gets little funding because of its long history of stigma.

When class was over we applauded each other and I invited them to read and share my blog. A handful of students lingered to ask me a few more questions. As they huddled in, I felt their warmth, intellect and genuine interest, and wished I had a child like them. As the stragglers exited, the carpeted room fell silent. I closed my laptop and was left with images of my adorable, struggling, seizing, trainwreck-of-a-kid, but grateful for how loving he is, then I took a lesson from the student who had sat to my left when I cried, and tried telling myself, it's okay.

2 comments:

  1. Thank you for doing this. The world could certainly use some more epileptologists.

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  2. Good work! Maybe a few future docs will add THC & CBD to their bag of safer solutions. Its tough when the hospital pharmacy/gestapo blocks any usage even out here in Washington State, where it is legal. You are pretty much on your own, but it works wonders. Go Calvin!

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