3.25.2019

nature nurture

After three weeks of seeing my son endure all but a handful of days with seizures, I stepped into nature. I find being alone in the forest, seeing and smelling the sea helps soften the edges of any angst I feel. Yesterday, I hiked an hour along a wooded path blanketed in needles and skirted by green ocean inlets where patches of sun filtered through the white-pine canopy. Upon emerging into a sloping, golden field, I got in my car and drove a few miles further south to the end of Harpswell Neck where the Giant Stairs have views to open ocean. Above me, the sky shown vast, blue and swept with clouds. Though we are still two months away from full foliage in this region, the skeletons of shrubs displayed their naked beauty.

My time spent outside on what was the first truly mild March day in Maine proved vitally restorative, because Calvin suffered his fifth grand mal of the month last night, only three days after a previous one. I think that the nature nurture I'd gotten earlier helped to cushion the blow of hearing my boy scream, seeing him stiffen and convulse, vomit and bleed, then whimper as softly and sadly as the lonely sound of wind creaking the trees.

3.24.2019

march madness

Eleven consecutive days. That describes the spate of seizures that started out this month. On sixteen of twenty-four days in March, my son Calvin has suffered at least one kind of event—grand mal, partial complex seizure or pain/night terror episode. My calendar is plastered in orange, blue and pink highlighter, plus black Sharpie, indicating the different kinds of attacks.

Earlier this month, because of the eleven-day series, I decided to increase Calvin's CBD oil by thirty-percent to see if it would put a dent in them. Nearly two weeks later, the seizures continued to occur on most days and, though the window is a small one, with each increase of Calvin's CBD, the number of days between grand mals appears to be shrinking.

Exasperated, I contacted the maker of Calvin's CBD oil and asked her for advice. She suggested I try a CBD reboot, which means removing all of his CBD for forty-eight hours, then starting back at the smallest dose that it was most effective. For Calvin, that means removing 145 mgs per day, then starting him back two days later at just twenty milligrams, the dose he was on last June when he went forty days without a grand mal. Hesitant of such an abrupt change, I opted first to reduce his morning dose from seventy mgs down to twenty, and his bedtime dose from 75 mgs down to forty, a dose he was on in November when he had the fewest seizures since last June. Yesterday, he was happy and calm, and last night he slept well. In a few days, depending upon what his seizures do, I may decide to do a total reboot.

In the last thirty days, Calvin has had five grand mals, eleven to thirteen partial complex seizures and one pain/night terror episode. It is his worst month-long period since October, and it is on track to be his worst month in over a year. It has left me despondent and wondering again if high doses of CBD can exacerbate complex partial seizures in him. We seemed to see this effect from a previous CBD oil.

Today, Calvin is a bit more amped up than usual. It is hard to know if his agitated behavior is due to the increase in Keppra that we did to account for his recent weight gain, or if it is because he is taking so much less CBD, or if he is already ramping up to have another seizure. Regardless of the source, his behavior is most distressing and, I guess, just the way epilepsy rolls.

Photo by Michael Kolster

3.23.2019

thank goodness

Thank goodness for waking up in the morning with the foggy memory of another dream set in San Francisco.

Thank goodness for sunshine on blistering, cold, windy days, for melting snow and ice, for the coming of spring. Thank goodness for rolling fires in the wood stove, and the sound of it creaking aside the unmistakable harmonies of Steely Dan.

Thank goodness for kick-ass nurses, for shaggy wackadoodles named Nellie, for my eighty-six-year-old neighbor Woody who pours me a shot of bourbon over rocks any time I show up at his door, then sits and listens to my meaningless prattle, and sometimes wipes my tears.

Thank goodness for wise parents of children stricken with seizures, and for an amazingly responsive, informative, kind, generous, smart mother who first made a cannabis oil for her child and now makes it for the rest of our kids.

Thank goodness for a scary-as-shit dystopian horror film that makes at least some of its audience think deeply about Us—about racism, privilege, poverty, oppression, slavery, walls and forgottenness in this crazy-ass, regrettable time in our nation.

Thank goodness for seizure-free days, and for my boy smiling at me when I walk in the door.

Thank goodness for good husbands, loving friends, in-laws who check in, brothers who call to talk. Thank goodness for the same salad I've made nearly every night for years (I kid you not) that always delivers (mixed greens hopefully including arugula, red onion, blue cheese, avocado, cherry tomatoes, croutons and Michael's special olive oil-garlic-mustard-red wine and balsamic vinegar-salt and pepper dressing.)

Thank goodness for the field of amazing, talented, thoughtful, progressive, intelligent individuals lining up with hopes to lead this nation to better things for all of us, not just for a select few.

Thank goodness for friends who love me from near and far, for ones who offer to stop by on nights when I'm flying solo, for ones who dream of me and Calvin and who take us to the farmer's market, for ones who come for coffee, who walk the dog, who join me at a bar or table, who see me grouse and yell but don't pass judgement, who make me laugh and cry. You know who you are.

My pal Woody

3.20.2019

love and light

I'm sending love and light to all of the sweet, innocent kids afflicted with seizures—the scary ones, the kind that hurt, the ones that cause broken noses, bloody tongues, face lacerations, the kind that make them feel as if they're being smothered. I'm sending love and light to the parents of these precious ones who have been cheated by no fault of their own.

I am sending love and light to Hannah, the mother of a little boy named Casey whose seizure I watched on video today and, when it was over, whimpered to his mother, "I don't know why." I wept hearing him breathe, watching his limbs stiffen and tremble and his hands cramp up. I saw my own son in his darling face and wondered if Calvin would utter the same sad words in the wake of seizures, if he could speak.

I am sending love and light to Lisa, whose daughter Emma has been crying for a week since a neurologist advised to reduce her daughters benzodiazepine too quickly.

I'm sending love and light to every mother and father trying their best to navigate the complex and enigmatic world of pediatric epilepsy while sleep deprived, spread too thin, despondent and anxious. I'm sending them strength to challenge and question neurologists. I'm sending courage to trust their guts in the face of doctors who cavalierly pile on medications, downplaying their side effects, aiming for seizure-freedom at nearly any cost, neglecting to consider quality of life.

I'm sending love and light to all the little ones who don't understand what is happening to them, and who have been robbed of a pain-free, care-free childhood.

              
Calvin coming out of a grand mal seizure, 2011

3.16.2019

hell and christchurch

Every so often a stranger, acquaintance, or even a loved one will tell me—usually referring to Calvin and his afflictions—that everything happens for a reason. Years ago, I used to kindly swallow my resentment that anyone would use the trope to justify my son's suffering as some sort of divine plan aimed at teaching me a lesson. Then, as my nerves steeled, I began to meet the notion head on.

Recently, I found myself fielding the topic with someone I am just getting to know. I expressed my rejection of the dogma and my disdain for organized religion. The conversation evolved quite civilly, as I questioned facets of the Bible and her notion of Hell. She was slightly hesitant to admit that, because I'm a non-believer, I will end up there someday. In other words, in the minds of some, Hell is still a real place where unrepentant sinners go, along with, I assume, the majority of the world's population who are Atheists, Agnostics, Muslims, Buddhists, Hindus, etc., even if they're good folks. We spoke a bit further on the subject of Jesus who, despite my secular bent, I think of as having been a righteous dude, someone who I wish more people, namely his followers, would actually embody; the world would be a better place, I feel.

For hours after our conversation ended, I thought on the subject of god and religion. I lamented the fifty Muslim men, women and children slaughtered by a heavily-armed White supremacist yesterday in Christchurch, New Zealand. I regretted some people's rejection that the POTUS is partly to blame because of his maligning of Muslims, vilification of immigrants, regular inciting of violence, and his refusal to denounce White Supremacy.

I was left with many (rhetorical) questions:

What kind of god turns a blind eye to these bloody atrocities? What kind of god neglects the suffering of children? What kind of god would pick one religion over another? What kind of god has such conceit as to damn his own children to eternal Hell simply because they don't accept "Him" as their savior? What about the multitudes of good people who lived before Christ existed, and the billions who may never have knowledge of him? And what happens to shithead Christians? Where do they go?

Pondering those questions about god, while the mist settled on the snowy field behind our house, the wind audibly pressed into the windows, my boy sighed from the room next door, I considered Nature—and came to the same conclusions I always do:

Not one who is merciful. Not one who is just. Not one I can or would want to believe in or trust.

The attack on the Muslim community of Christchurch, while disturbing, was not shocking to me. The White supremacists spouting hateful rhetoric against Muslims, Jews and People of Color are becoming increasingly emboldened to act on those impulses. Their enmity is stoked by bigoted, fearmonging leaders who like to call themselves Christians and who stand to gain from sewing this kind of division. I am once again reminded of the systematic murder of disabled and infirm adults and children like my son Calvin by Nazi's during World War II. Thought to be a stain on the Arian race and a burden to society, they were some of the first in millions of mostly Jews to be exterminated by Fascists under Hitler's rule.

This sickening ideology of White supremacy has never been eradicated. It simply goes from skulking under rocks and in pockets to brazen examples of hatred, violence and bloodshed. It is grounded in abject ignorance. Its zealots exploit baseless fears of other, using scapegoats for their own failings. And, as in the case of slavery and the subjugation of women, they often use God and the Bible as their grounds.

So, perhaps Hell is not a myth as much as it exists on earth in the form of disease, genocide, oppression, war, famine, rape and massacre. Ironically, we even find Hell in houses of worship, and in places with names like Christchurch.

Hands from Hell sculpture, Thailand

3.13.2019

good night

After a twelve-day stint in which Calvin suffered several suspicious events (possible seizures), two grand mal seizures, at least eight partial complex seizures and a two-hour pain/night-terror episode, I decided to increase his Palmetto Harmony CBD oil by nearly thirty percent. My gut and logic agreed that doing so was not very risky, and might serve to thwart some of Calvin's seizures.

Yesterday morning, after his newly increased morning dose, Calvin rebounded well after a grand mal and even went to school. After last night's increased dose, he slept soundly until about two-thirty, when he started getting restless. I laid him back down and covered him several times, but he kept sitting up. Finally, I switched on the light and was able to determine that his diaper was soaking, so I got him out of bed, changed his diaper and took his temp since he felt kind of warm. While doing this, he did not seem seizure-ish at all, and when I laid him back in bed he fell right back to sleep.

When Calvin woke up this morning at six, he seemed pretty good. I did not notice any suspicious behavior, no signs of partial complex seizures such as funny breathing, rapid heartbeat, grumbling tummy, pale skin, panning eyes, fingers in his mouth, or clammy hands. He seemed "normal" for the first morning in nearly two weeks!

This lack of seizure activity in the wake of a grand mal, and having significantly increased his CBD oil is promising. It tells me that the CBD oil is likely not the culprit in Calvin's recent uptick in seizures, though I need more evidence to be convinced. In any case, Calvin had a good night. And though I was awake for almost two hours dreaming of spring, of San Francisco, and worrying about my child, I ended up having a good night, too.

3.12.2019

risk vs. benefit

Despair is sinking its teeth into me again. After three months, each with "only" nine seizures, already this month Calvin has had at least one seizure nearly every morning, including two grand mals. To add insult to injury, last night he had another of his pain/night-terror episodes during which he writhes and screams and cries in bed for hours. I do not know the source of his misery. He cannot tell me what hurts. I have a hunch he might be suffering migraines, perhaps a latent effect from benzodiazepine withdrawal, but I've no way of knowing for certain. There is no soothing him. Acetaminophen doesn't seem to work. Extra CBD seems to lessen his suffering, but not always. In agony, he lunges at me, grabs and yanks my hair. Light flashes like lightening when he bops an errant fist into my eyeball. He kicks and bangs his head against his bed's panel, which I've padded with blankets and pillows to soften the blow. He's like a rabid animal, and I'm in the cage with him trying to save us both.

Finally at ten, after two hours of this misery, plus some acetaminophen and extra CBD oil, he fell asleep in my arms. But I was wrenched awake at 4:50 a.m. to one of his grand mals.

This month's unusually long spate of seizure activity perplexes me. Maybe I can chalk it up to his recent and significant growth in height and weight. Perhaps puberty itself is the culprit. I don't want to believe it is the CBD oil, but I cannot rule it out. I remind myself to avoid fear-based decisions, and to instead look to logic and instinct for guidance. If I consider what seem to be good side effects from increased CBD—better sleep, balance, mood, walking, appetite—and since I know its therapeutic range to be quite broad (between one and twenty-five milligrams CBD per kilogram of weight) I should not be fearful of increasing its dose, which currently is 3.7 mgs/kg of his weight daily, equalling 110 mgs CBD divided into two doses. 

I understand it is within the realm of possibility that higher doses of CBD or THC can trigger seizures in some individuals, but that is also true of antiepileptic pharmaceuticals. The difference, I believe, is that side effects from whole-plant cannabis are likely less harmful, if not beneficial. And so I must weigh the risks and benefits of raising his dose, and not let fear govern my decisions. Moreover, I will not readily submit that these extra seizures are my son's new normal.

So tonight, I will increase Calvin's CBD to seventy milligrams twice daily ... and hope at least some of them stay at bay.