advice and intuition

She cried the cry I've cried so many times. Helpless, hopeless, sleep deprived. Racked by seeing her child repeatedly seize. Pummeled by too many drugs to manage and consider, enduring their countless impossible side effects. Exhausted by too many hospitals and doctors, days on end of spoon-feeding and changing wet and poopy diapers, all compounded by stresses of the coronavirus. I know the feeling, that sense of drowning. I picked up the phone and tried my best to throw her a life ring.

This mother had previously connected with me on a social media page about epilepsy. She was reaching out again for advice about Onfi, which was the second of two stubborn benzodiazepines (think Xanax, Valium) that Calvin was on for more than half his life. It took us four years to get him off it. Onfi had been prescribed to help Calvin wean from the first benzo, Klonopin, which he regrettably started taking when he was just three years old. His neurologist at the time, who I'll refer to as Dr. Rx, added Klonopin to Calvin's regimen as a bridge drug while we titrated another, Lamictal, to a therapeutic level. The move was totally unnecessary considering a second drug, Zonegran, had already been prescribed to serve that purpose. I felt it was a cover-your-ass maneuver. I questioned Dr. Rx's logic, asked why he prescribed Klonopin when benzodiazepines aren't meant for long-term use, but at the time I wasn't confident enough in my own research or assertive enough to press further. I was so green then. Everything was scary, new and confusing. And Calvin, even at three, was so tiny. But I should have known since I had questioned Dr. Rx's prescribing of the previous drug, Depakote, which risked causing liver damage especially in someone like Calvin; after six months, it appeared to be doing just that. When it came to the Klonopin, I was told Calvin would be on it for just a few weeks, but despite my repeated pressure to take him off of it, he remained on it for over a year, making it more difficult to take him off of it without experiencing a doubling of his seizures and the introduction of another benzodiazepine, aka Onfi.

During the course of my conversation with this mother, I tried to lessen some of her worry over having re-dosed the Onfi after her child had vomited. I hope I disabused her of any guilt or fear. I described how, years ago, neurologists never really knew how to council me in identical situations. Each neuro had a different suggestion for me, which were clearly best guesses, and in the end I always relied on my intuition. This mother and I talked through her situation. I told her what I knew about Onfi's long half-life. I asked her some questions about her son's behavior and seizure activity during the wean. Together, we strategized, deciding it might be best to skip his bedtime dose, then to give her child his morning dose a little early.

"Above all," I told her, "trust your gut," suggesting that if in the middle of the night things didn't seem right with her child, she shouldn't worry about giving him his next dose; she could get back on his regular schedule gradually. (In the end, our plan worked.)

I went to sleep remembering those awful moments of doubt, guilt, self-pity and angst, all exacerbated by days, months, years of too little sleep. I tried to recall what Calvin was like before his epilepsy diagnosis and before starting a battery of antiepileptic drugs—sometimes four at once. I imagined what he might be like if he'd never taken so many mind-altering medicines, especially at a crucial time of brain development. I drifted off wishing this mother strength, wishing her baby peace and healing, wishing epilepsy didn't exist.

A photo of Calvin just before his 2nd birthday, before he was taking any anti epileptic drugs.

seizures and dreams

Last night in the wake of my son's seizure, while spooning him, I dream.

I'm in a small room in a strange, sparsely furnished house with a dozen others, none of whom I know. It's just after twilight, an indigo sky crowning a nearby mountaintop. Suddenly, the lights go out. Somewhere, whether in my head or from some eerie broadcast, a man's voice booms that everything is going to come down. It's clear the others hear the ominous message too; I see them scrambling about nervously. Then comes a low rumbling, one which I feel deep in my bones. Is it an avalanche? An earthquake? An explosion? Peering out a nearby window I notice that all of the homes nestled closely together into the mountainside are darkened too. I sit and fret, wondering if a tree will crash through the roof and crush me. I imagine the ceiling caving in, the earth swallowing us whole. I'm held captive awaiting my demise, only to wake to the sound of my son rustling under his covers. It's not yet dawn, and I hear the lonely rumble of passing snowplows, feel the house quake as the plows clear fresh snow from streets which are yet desolate.

With the exception of the unexpected seizure, all is well. Compared with years past, Calvin sleeps well after his grand mals and does not go on to have subsequent ones. No longer does he stay up for hours wired as if in a panic, his heart pounding, his fingers madly knitting. My guess is he is nearing full freedom from some of the effects of benzodiazepines and their withdrawal. Perhaps he is also benefiting from a much lower dose of Keppra than ever before. Maybe my latest batch of THCA cannabis oil is responsible for his recent, relatively low seizure count—only four grand mals this month and zero focal seizures so far—which is less than half his average monthly total.

As I drift back to sleep with surprisingly little worry about my boy, outside, tiny white flakes fall in windless conditions. Though the sun is far from rising, the sky is grey-white. The sleeping world is dark and still and quiet, save the rumbling of passing snowplows.

day fourteen

Just a quick note to tell you, dear readers, that Calvin has been seizure-free for two weeks. This, on the heels of an increased dose of a homemade THCA oil, has been one of his best stints in five years; he's had only three grand mals and two focal seizures in the last thirty days.

When choosing from two strains of cannabis before making my last batch of THCA oil, I opted for the one whose parent is Chemdog, the strain I used to make Calvin's oil for five years until it became unavailable. Chemdog rendered Calvin's daytime grand mal seizures virtually non-existent, relegating them almost exclusively to the nighttime, and keeping them in relative check during a difficult and protracted benzodiazepine wean. My hope is that this offspring of Chemdog, called Crescendo, will be even more effective.

It is difficult to describe how liberating it feels to look at a calendar page free of orange and blue highlighter and black Sharpie circles indicating seizures. It has been my wish that Calvin might somehow outgrow his epilepsy. My backup wish is for him to be free from seizures and side effects, to find a treatment which stops his seizures without causing him pain, discomfort or emotional and psychological strain. Epilepsy is a moving target, so I don't know if I have found the solution. But at least I can celebrate a small triumph, and hope for more in the coming days.

finding balance

It's been challenging lately to find time to sit down and write, in great part due to Calvin's seizures. So far this month Calvin has had nine days with seizures, translating into missing quite a few days of school due to the drowsiness and fatigue that often come in the wake of grand mals. Sometimes I can send him to school the day he awakens to a seizure, but other times he catnaps—on my lap much of the time—all day long and into the next.

When Calvin does go to school (like today) after being home for several days in a row, I'm faced with balancing my need to get outside and move my body, with my desire to write, with my need to do paperwork, grocery shopping, yard work and chores.

Today, since it's sunny, I spent a couple of hours raking leaves in the back yard. And though I don't love raking, I do get some exercise and the result is most satisfying—the revealed green grass contrasting with copper pine needles and the brown bark mulch beds. The low sun casts lovely shadows across autumn's purple-, bronze- and red-leaved rhododendrons and azaleas. Amid so many seizures, I still have much to be thankful for.

Nonetheless, if nine days worth of seizures so far this month seems like a lot, it is. But taken into context, it is, for Calvin, kind of par for the course since 2015, the year after we began weaning him from his benzodiazepine, Onfi, aka clobazam. His breakdown looks like this:

2015: 51 grand mals and 70+ focals = 121+ seizures (weaning Onfi)
2016: 51 grand mals and 105 focals = 156 (weaning Onfi)
2017: 58 grand mals and 95 focals = 153 (weaned Onfi in February)
2018: 59 grand mals and 78 focals = 137

With one month to go, I'm predicting Calvin will end this year with 68 grand mals, though probably only 66 focals, for a total of 134. It's important to note that this number was attained on zero benzodiazepine, far less Keppra, a recent growth spurt and raging hormones.

So though Calvin is having slightly more grand mals, he's having fewer focal seizures while seeming to be happier, calmer, sleeping better and being more compliant. But by saying over one-hundred seizures a year is par for the course is by no means saying it is acceptable or that I've resigned myself to that number. I haven't. I just need to find the right treatment and balance for Calvin and for us, one that limits his seizures and suffering from side effects.

So today I made a call into Calvin's neurologist to speak with him further about starting Calvin on Epidiolex, a plant-based pharmaceutical version of CBD (cannabidiol), one of cannabis' medicinal constituents. A friend's daughter is doing quite well on it, and I'm closely following an Epidiolex Facebook parent group, noting the drug's side effects and most effective dosing, which is less than what most prescribing doctors seem to think. My hope is that since Epidiolex is cannabis-plant based, maybe it could work better for Calvin than other, traditional pharmaceuticals have in the past.

And for those of you wondering, Calvin still takes Palmetto Harmony CBD oil plus a THCA oil that I make. I've been tinkering with the doses of each for months since Calvin went forty days without a grand mal after first starting the CBD oil eighteen months ago. Regrettably, we've yet to repeat that kind of seizure control since. I imagine it's all about finding the right balance. Sadly, I haven't yet.

Calvin catnapping last Friday after I picked him up from school.

hope, dread, want

The day began large. Having been the second one in a row of seven that Calvin didn't wake to a seizure, I felt some semblance of hope. But as the day wore on, hope became dread, and dread became want.

Around noon on Sunday, we made our way north to the Union Fair. The hour-plus drive felt long, winding through Maine's back roads where farmland sprouts double-wides and barns, dilapidated antique stores, tractors, graveyards, and at least one shop devoted to selling guns. I tried to stave off a bit of anxiety amid the unfamiliar surroundings so far from home, tried focusing instead on feeding Calvin and thwarting his incessant attempts to stare at the sun.

It was a hot day to attend a fair, but the cloud cover helped for a spell. A nice lady selling tickets from a kiosk let Calvin in for free after she saw him spastically flailing in the backseat of the car. From the get go, Calvin was stubborn when asked to walk, a repeat of the day before. He'd take a step or two before collapsing in our grasp, getting us nowhere. Thankfully, we brought his stroller.

The highlight of our day's adventure was a ride on the Ferris wheel. This was a first for Calvin, for us as parents, and one I'd dreamt of for years. Calvin wilted in the sun waiting to board, and during the wheel's five revolutions, he didn't seem to register much of anything. He squirmed and squinted exhibiting discomfort. While Michael held him in the shade, I took in a bit of my surrounding world. The sky proved spectacular—a mix of puffy white clouds and wispy ones met the horizon. Compared with the West, this small part of Maine, save some rolling hills, is flat, with nary a vista to take in. In this landscape with its tall white pines and oaks, it's easy to feel stuck. Needless to say, at fifty to one-hundred feet, I ate it up.

Because of Calvin, we cut our fair-time short. The drive south felt more relaxed, any apprehension now behind us. Though we were at the fairgrounds just over an hour, and though it was far from Calvin's best performance, we had, I think, accomplished something, and it felt good to be heading home. On the drive, however, Calvin became increasingly agitated and, at one point, he let out a bizarre screech. I knew this was a bad omen, causing me some dread.

Once home, Michael gave Calvin a bath while I took Nellie on a short walk. When I came back, I heard Calvin upstairs crying as if he were hurt. After his bath, our boy had devolved into what I've previously described as night terrors. Calvin was writhing and crying, stretching and recoiling, shrieking and moaning as if he were being tortured. Michael and I guessed he had a migraine, so I gave him an acetaminophen suppository. Lauren stopped by, came upstairs and gave us some much needed tenderness and moral support. I shared my belief that these episodes are latent benzodiazepine withdrawal side effects. I'd read that Stevie Nicks, having withdrawn from years of prescribed benzodiazepine use had said that her detox felt like somebody had opened up a door and pushed her into hell. This is how Calvin sounded and looked.

After twenty minutes, when the acetaminophen didn't seem to be helping, I gave Calvin his nighttime dose of homemade THCA cannabis oil, except this time I gave it to him rectally. Within five minutes he was sound asleep. Half an hour later he woke up enough for me to give him the rest of his nighttime cannabis oil and his Keppra. He slept peacefully the rest of the night.

Unlike most seizures, rarely do I see with any clarity these pain episodes coming. In the past they've been while he's asleep, leading me to think they are night terrors. Now I know they are not. Regardless, they are dreadful. In the moment, I want for nothing but for Calvin to be at peace, to be set free from the torture and misery consuming him. I want for him to feel serenity, no matter how brief. I want him to feel the calm of looking into a sky with tranquil clouds which touch the horizon. I want him to feel hope, not dread, not want.

innocent abuses

It has probably not been more evident than this weekend that our fifteen-year-old son, Calvin, is still suffering the side effects of the benzodiazepines he began taking at the age of three, and that he has been off of for over a year. What is clear is that Calvin cannot sit still for more than a few seconds or minutes at a time, except when sleeping. What is unclear is whether it is a case of akasthisia, psychomotor agitation, mania or some other condition or combination of conditions and whether it might also be due, in part, to his Keppra. In any case, all day long Calvin paces, pats, bites, writhes and flails.

This weekend, while on flights to and from Florida to celebrate Michael's mom's eightieth surprise birthday (more on that later), we were held captive to Calvin's innocent abuses. In short, he destroyed us—batting us in the face with his flailing arms and fists, tearing at my brittle hair with his sometimes clammy hands, shrieking at times for unknown reasons, grabbing around our necks every few seconds for hours while we were confined to sitting on either side of him. It is hard to be on the receiving end of this kind of relentless manic behavior from a kid approaching my height, but I cannot imagine the suffering he must endure from this violent restlessness that has plagued him for years.

Last week, our local NPR station aired a call-in show on benzodiazepines. Its producer, an acquaintance of mine, suggested I contribute; I was grateful to be its first caller and to share our experience. If you are taking benzos—even if just periodically—or thinking of taking them, I recommend you listen to the show.

This weekend, I was reminded of how deleterious benzodiazepines like Klonopin, Clobazam, Valium, Ativan and Xanax can be on the developing mind, the adult mind, the aging mind. Benzos like Xanax can become addictive after only a few doses. What's worse is that they often have paradoxical side effects and worsening of the very symptoms the medications are meant to treat, particularly when their efficacy wears off, as they tend to do. 

When taken for anxiety, insomnia and seizures, those conditions can quickly worsen when benzo dependency kicks in, causing many patients to increase their dose in order to recapture the desired effects. This can become a viscious cycle. Regrettably, by the time folks witness and understand the dichotomy and unsustainable nature of benzos, they may find themselves at high doses of the drugs that are nearly impossible to discontinue*.

From Wikipedia:

Long-term worsening of psychiatric symptoms (of benzodiazepine use)

While benzodiazepines may have short-term benefits for anxiety, sleep and agitation in some patients, long-term (i.e., greater than 2–4 weeks) use can result in a worsening of the very symptoms the medications are meant to treat. Potential explanations include exacerbating cognitive problems that are already common in anxiety disorders, causing or worsening depression and suicidality, disrupting sleep architecture by inhibiting deep-stage sleep, withdrawal symptoms or rebound symptoms in-between doses mimicking or exacerbating underlying anxiety or sleep disorders.

I should note that some folks, who don't seem to experience these side effects, swear by benzos.

Sadly, what I think has happened to Calvin is that his developing brain was forever altered by benzodiazepines. He was not a hyperactive child before taking them. I fear he'll never be calm again, forever restless and forever subjecting us to his innocent abuses.

*For help discontinuing benzodiazepines, please refer to The Ashton Manual.

nocturnal hours

It's hard to believe that five years have passed since I began making a THCA cannabis oil to treat my son's epilepsy. Shortly thereafter, I started the difficult and protracted effort of weaning his benzodiazepine, Onfi, aka clobazam. The endeavor took us four years, but we succeeded. What I find most noteworthy since starting Calvin on cannabis oil is that his daytime grand mal seizures—despite the benzo withdrawal—have virtually disappeared. The seizures, which were common in late afternoon, have been largely limited to nocturnal hours; he has suffered only a handful of them during the day in those five years. Calvin's partial seizures, on the other hand, often come in clusters and often occur in the wake of grand mals, usually presenting in the wee morning hours, yet still nocturnal, as they did today and on most if not all of the past six days.

This spate of complex partial seizures is disheartening. For the past few months, the Palmetto Harmony CBD oil seemed to have reduced their monthly numbers from double digits down to three or four. Regrettably, however, as I have been increasing its dose, we have not yet seen them disappear as I had hoped. I might now know why.

Yesterday, after Calvin received a meningitis vaccination, I weighed and measured him. I've sensed he has been going through a growth spurt, but I was surprised to see he has gained nearly seven pounds and has grown over an inch since October. This rapid and substantial weight gain prompted me to slightly increase his bedtime Keppra to equal a previous level, effectively zeroing out one variable as I continue to titrate his CBD oil. My hope is that it will lead to better seizure control. I'll let you know.

This past week's nocturnal seizures have meant that I've been waking up between two and three-thirty and getting little if any sleep from then on. Sleep deprivation is a form of torture, spiking my despair, anger, impatience and resentment. And yet, when I pull myself from its grip, get some rest, take a shower, I can see my way out of its shadow and am heartened when I remind myself of Calvin's seizure-free afternoons. I am pleased with how quickly he now (usually) bounces back from grand mals. I'm consoled by the notion he is finally growing, is taking a fraction of the drugs he used to, is walking tall, standing steady, having fewer mood swings and tantrums, and is more often going to sleep when his head hits the pillow. And though I still have to get up in the middle of the night, watch him seize, deal with the aftereffects of grand mals, change poopy diapers, dress, bathe and feed a fifteen-year-old, I can say with confidence that my boy is easier to take care of these days.

Photo by Phoebe Parker

fifty-five

Today I'm celebrating my fifty-fifth spin around the sun. Tomorrow I celebrate eight years of writing a blog that I never imagined could garner over a million hits while helping parents of kids with epilepsy wean from their benzodiazepines, navigate the world of medicinal cannabis oils, and understand that they are not alone.

In honor of the milestone, for which I'm most grateful—grateful to my parents for having "mistakenly" made me, grateful for being alive, grateful for being healthy beyond a few achy joints, grateful for, and humbled by, the many privileges I enjoy due to the accident of birth—I squeezed into a favorite t-shirt I haven't worn in years, one that has the number 55 emblazoned on its front.

My mother used to tell me that we never really reach maturity, rather we continue to mature as long as we are alive. As a youngster, I thought that sounded pretty wise and thoughtful, and I fully embraced the notion. Since then I've continued to enjoy getting older. I figure with age comes experience and with experience comes wisdom. At least I hope I'm getting wiser; Oscar Wilde said age can sometimes come alone—yesterday's regrettable senate vote on supreme court nominee Bart (or is it Boof?) O'Kavanaugh was a validation of said premise.

Over time, I've come to consider birthdays as opportunities to explore how I can improve myself and find new ways to contribute to the betterment of the world. This year, I'd like to get back into jogging with the hope of lowering my stress level and strengthening my body, and perhaps fit into my jeans and tops with a little more wiggle room. I also want to use my agency to change the stale political paradigm, want to smash the conservative white-male patriarchy into bits, want to support new faces and voices, and promote progressive ways of managing an ever-changing world. Conservatism and originalism be damned. Nothing is fixed. The only constant is change.

So, as I celebrate another passing year, I hope to remain open and brave, not fearful and closed. I hope to see each day with new eyes ready to explore the beautiful and awful unknown. I hope to embrace humility while remaining fierce in my fight against bigotry, and sturdy in my struggle for justice. Most of all, I hope to keep growing older for a long while, and I aim with my everything to evolve.

nursemaid

I remember being eager to meet my child for the first time. Rubbing coconut oil on my pregnant belly after a swim, I wondered what he'd be like (I was pretty sure I was going to birth a boy). Would he have blond hair like I did as a toddler? What color would his eyes be? Might he grow up to be tall and thin like his dad and my father? Might he become a world traveler? A teacher? An artist? A writer or musician? I dreamt about all kinds of things we'd do together, mother and son.

I had often wondered what I'd do if I were to have a disabled child. But, like any of us, I never truly believed it would happen to me. After all, I was so very healthy, especially after I quit my toxic job.

And then, two weeks before Calvin was born, doctors told us that something was terribly wrong—the lateral ventricles in our baby's brain were enlarged, possibly due to bleeds in his brain.

Yesterday, I held my tiny fourteen-year-old child in my arms as he seized on and off all day long. He had had two grand mals the night before, and he woke to another grand mal this morning. He's had more seizures in the last two-and-a-half days than he did in the entire month of September. I don't know what is going on.

Am I giving him too much CBD, or does he need more? Is he going through a growth spurt? I swear he is taller than just a few weeks ago. Are puberty's hormones causing this bad streak? Is he sick again? Is he experiencing a latent spate of benzodiazepine withdrawal?

I ask myself these questions often. Yesterday, while coaxing Calvin to drink even the slightest bit of water, I realized no one would do what I do for Calvin, not even in a hospital or nursing home. In some ways I feel more like his nursemaid than his mother—safely lifting him from his bed to his changing table and back again, taking his rectal temperature, monitoring his bowel movements, giving him daily suppositories, sometimes having to digitally remove his stool, syringing water in his mouth when he won't drink, giving him rescue meds when waves of seizures come, researching new medicines and treatments for epilepsy, constipation etc., making THCA cannabis oil, trying to collect urine for laboratory testing by placing cotton balls in his diaper, waking up scores of times nightly to check on him, lie him back down and cover him, tend to him if he is seizing.

After the third grand mal in as many days, plus the unknown number of partial complex seizures in-between, Michael and I decided to give Calvin Diastat—rectal Valium—to stop the cluster. So far it has worked. What I do next, I am not certain. I'm not a doctor, and neurologists rarely, if ever, have the answers. So I'll have to consult with other parents on social media, and I'll have to trust my motherly gut, and employ my nursemaid power.

changes

The kid we have now is the kid we will likely have in years to come. With few exceptions, Calvin is the child he was five, ten, twelve years ago. He still wears diapers, still can't talk, still whines and coos, still spins in his jumper, still crawls on the ground, bangs shutters, bites rugs and stares at the sun.

He still takes medicine and endures scores of seizures every year.

This weekend, however, marked another personal best: Calvin walked with me and Nellie nearly a mile—down and back from Lauren's house—with a brief break to sit and drink some fresh, unfiltered apple juice with Lauren. Calvin has walked to Lauren's only twice before, though he has never walked back. Having said that, Calvin still pulled his usual antics of trying to drop down every few yards once we got about halfway to her house. I'm ashamed to say that my friend Stephanie, having seen me struggle outside her house came out and helped me with Nellie, had to witness me cursing my exasperating situation. Thankfully, like a rental horse returning to its stall, Calvin exhibited little stubbornness on the walk back home.

Sunday was a repeat performance; Michael and I took Calvin and Nellie to Portland where we strolled several cobbled blocks with a compliant child. It was the first time we've visited Portland without having brought Calvin's stroller along.

In pondering these recent milestones, it seems that with each passing month since his last dose of benzodiazepine Calvin's stamina improves. Perhaps, too, taking less Keppra, by virtue of his weight gain, probably helps him too. Additionally, the reduction of his THCA cannabis oil seems to be helping him have less agitated afternoons. Moreover, the addition of Palmetto Harmony CBD oil, unlike other CBD oils he has tried, appears to be reducing his seizures overall; since starting it in late June, Calvin's monthly grand mals have gone from six to eight down to four or less. If Calvin continues on this positive trajectory, he'll have fewer seizures this year than in any year since 2014 when he was taking way more medication!

So, though the kid in the video below, which was taken just before his eighth birthday (he is now fourteen), is heartbreakingly much the same as the one we know and love today, I am deeply grateful he is doing better in terms of behaviors, stamina, understanding, sleep and seizures. And though my kid isn't riding bikes, competing in sports, writing essays, planning for college—on the contrary can barely push a doorbell—I embrace and consider his tiny milestones as significant and positive changes.

              

psychotic child

I stood in Woody's driveway and wept. As Woody hugged me and brushed away my tears, Calvin banged and bit the white vinyl siding of the garage where there is a permanent stain from him doing so for years.

My son was experiencing a repeat of the previous day's deranged behavior, a harbinger of the next morning's grand mal seizure. Typically, a grand mal acts as a kind of reset for his lunacy, but this time his fidgeting and "ooh-oohing" and fingering lingered and worsened as the day went on until he was utterly psychotic and, as a result, perhaps so was I.

Later, as I sat on the edge of my bed watching Calvin stand facing out our bedroom window, his jaw clenched, arms up, fingers wildly snapping inches from his face, I wondered how I'd take it anymore. Seizures are easier than this, I thought. This psychotic child of ours is so unreachable—seemingly inhuman—in these agitated moments, which sometimes last for hours and have been reliably happening with frequency for years. Suddenly it occurred to me, as it has before, that perhaps Calvin was suffering from the effects of too much THC. He'd gotten a bit extra cannabis oil after the seizure to prevent subsequent ones, and it worked. But both of the cannabis oils Calvin takes—my homemade THCA oil (THCA is non-psychoactive) and the Palmetto Harmony CBD oil (also non-psychoactive)—have small, residual amounts of THC, which is psychoactive; It is impossible to make whole-plant oils that don't have traces of THC. I should note here that all pharmaceutical drugs are psychoactive.

My hunch about THC and my hopes for CBD led me to the decision to forgo Calvin's 3:00 p.m. dose of THCA, even though I credit the advent of that dose with virtually eliminating Calvin's early evening grand mals four years ago. At this juncture I feel it necessary to give a secular amen for THCA, which no doubt helped my son get off of his benzodiazepine, clobazam, aka Onfi.

When I was able to grab my computer, I looked up THC and its effect on children. One of the first articles I found was this one, which I scanned from top to bottom. What stood out to me was the use of the words, excessive and purposeless motor activity of the extremities (hyperkinesis) to describe one of the side effects of THC toxicity in children. Though psychomotor hyperactivity is also a side effect of benzodiazepine use and their withdrawal, I wondered if Calvin might be exhibiting this behavior because of the extra THC. Having read the article twice, then used Woody, Michael and my friend Lauren as sounding boards, I decided to also eliminate Calvin's morning dose of THCA, replacing it with an equal amount of CBD in milligrams (the CBD oil has about half as much THC as my THCA oil).

The next day Calvin was cool as a cucumber and fell asleep as soon as his head hit the pillow. Today he is slightly agitated, though I'm fairly certain it's because he is constipated. I'll spare you the details, but suffice to say, we're working on that.

Eventually, I'd like to eliminate the THCA if we are lucky enough to see the Palmetto Harmony CBD do a decent job of decreasing his seizures; so far so good. Already, I feel totally liberated not having to give Calvin his afternoon dose, having to remember to draw it up and schedule activities around its administration. If we can eliminate it, I won't have to carve out two hours to to drive and get the herb, won't have to get a liquor license to order the organic cane alcohol I use to extract the cannabinoids, won't have to pay $125 for one gallon of the alcohol to be shipped from Oregon, won't have to spend a week making the oil, won't have to dose it, won't have to think about it. Best of all, if we can get Calvin off of the THCA I'll feel more confident taking Calvin on a plane with just his CBD, which is less of a risk, legally speaking. Perhaps we can travel again; it's been a part of forever since we flew anywhere as a family.

So cross your fingers and knock on wood ... again. And though praying is not my thing, if it's yours, then feel free to pray we can escape this intolerable psychotic cycle we've been stuck in for years.

Antiepileptic drug agitation, 2011.

anecdote

In the world of cannabis as treatment for epilepsy and other disorders, the word anecdote is often tossed around, uttered by cautious, skeptical or ignorant physicians. When pressed, they repeat the vapid stance that there are no randomized double-blind, placebo-controlled studies proving cannabis' safety and efficacy nor studies of its interaction with other drugs. They also question cannabis' psychoactive constituent, THC, which is found in trace amounts in the non-psychoactive CBD and THCA cannabis oils. What they fail to consider is that all pharmaceutical antiepileptic drugs have mind- and body-altering effects—slowing of the brain, behavioral disturbances, emotional disturbances, sleep disturbances, bodily disturbances—some of which can be dangerous if not fatal. They also fail to observe that not all pharma drugs are tested on each other for interactions.

Since introducing Palmetto Harmony a little over a month ago—a CBD cannabis oil, which some parents have advised calling botanical or hemp oil—Calvin has had fewer grand mals. This month, he has had only three compared with last quarter's monthly average of six or seven. Since increasing it to its current dose—one nightly milliliter equalling 20 mgs of CBD or about 0.3 mgs per pound of his weight—he has not had any grand mals in twenty-two days, which is three times longer than his recent average between grand mal seizures. And in that time we have observed only two very mild, brief partial complex seizures.

Calvin's anecdote: a major reduction in overall seizure activity in the wake of a four-year-long benzodiazepine withdrawal.

Had I not been in the habit of taking copious notes all these years—scrawling on my calendar and in my journal with black Sharpie, orange, blue and yellow highlighter—I might not believe it myself. Calvin is two days away from a near-all-time record low of monthly grand mals (one) and just over a week from what could be a thirty-day stint with zero grand mals. To call this positive result an anecdote is akin to calling it fake news. Fake news it is not; and cannabis oil—contrary to what Jeff Sessions, the Feds, and the Prison Industrial Complex will have you think—is not the enemy of the people.

twice in a new moon

Skies opened up and I awoke. Rain beat down. I could hear my boy slap the wall between our rooms. We'd gone to sleep just before noon. What I had thought was a mere blink had actually been two hours. I dragged myself from bed with little strength, the days' exhaustion still lurking in my muscles and bones.

My boy had seized three days ago after having suffered an unsettling weekend and not long after a previous fit. Then, on the new moon, he slept all day at school. I analyzed the hell out of it all, wondering what to do.

Did he suffer a concussion when he fell out of bed on the nurse's watch, landing on his head? Is the extra magnesium causing a problem? Is he suffering a bout of benzo withdrawal? Might he be outgrowing his Keppra? Is he going through a growth spurt? Is he getting sick? Is his epilepsy progressing like I heard it can do?

As the deluge swept pollen into opaque yellow streams, I went to him and he smiled at hearing me. Seemed happy as a clam. The night before he'd seized again just after he went to sleep, his nighttime meds not having had a chance to kick in yet. Still, an unusual time for him. I'd been at dinner with a friend. I'd jumped when the phone rang. I resisted the urge to go home, knew Michael could handle whatever went down.

When I arrived home, my body still buzzing from moving to a live theater performance of the earliest songs of rock and roll, it was quarter past ten. I crept upstairs, pulled back the netting on our son's bed and squirted a dose of THCA cannabis oil between his lips. He stirred but did not wake. I repeated the task at two a.m., but at four he nonetheless woke to a partial complex seizure, heart pounding in his chest, Michael next to him. I gave Calvin another dose of oil and went back to bed.

Twice in a new moon my son seized. Thrice this week, making eight grand mals in a months' time, when one is one too many.

The skies, having gone blue for a spell, are darkening again. Bark is black. Grass is wet. My kid is eating and drinking again. I'm waiting to hear back from his Primary Care who fields my many queries about anything. I'm tempted to discontinue his magnesium; perhaps less is best. For now, anyway, we seem to have our son back—our drooly, animated, restless, affectionate boy who keeps us up at night when we should be sound asleep in bed.

Photo by Michael Kolster

riding the wave

At times he seems famished. At others, averse to eating altogether. My fourteen-year-old boy Calvin cannot tell me when he is hungry or thirsty. I have to guess, do trial and error, sit him in his chair to see if he wants to eat something. Even then, my boy is so restless due—I believe wholeheartedly—to his eleven years of taking benzodiazepines and the heinous and protracted effects of their withdrawal.

I wonder if we'll ever get my calm child back. I hope with every fiber of my being we do. But my sense is that my son has been ruined. Ruined less by seizures, I wager, than by pharmaceuticals, most notably the benzodiazepines which doctors prescribe so cavalierly—often ignorantly—for epilepsy, anxiety, muscle relaxation, and insomnia.

When Calvin was an infant, before he began having waves of seizures—at least obvious ones—and when he wasn't suffering from gastrointestinal distress or nervous system overload (he was born six weeks early with an idiopathic absence of a significant chunk of his brain's white matter) he was a calm child. He nursed peacefully, sat in Michael's lap happily, was content during walks in the stroller, sometimes bundled up against twenty-degree temperatures, sat patiently in his bouncy chair as we fed him, laid still in bed with us and on blankets in the summer shade. But at age two, when the seizures began, so did the meds. And when the meds began, as early as his first dose we saw him change and morph into the amped-up child we see today, and most particularly since the advent of his first of two benzodiazepines, Klonopin, when he was just three years old.

Michael and I are trying to ride the somewhat recent wave of more frequent grand mal seizures of late (he had one last night on day five), plus a string of days watching Calvin perseverate—finger snapping and rubbing, repetitive humming, jaw clenching, sun staring, disengaging—hoping he is "simply" going through a bout of benzo withdrawal that will soon dissipate. But it is scary to see Calvin in this kind of place; I worry that he'll get stuck and never change or improve, dread that my kid will never get back to his baseline functioning. After all, the drugs have ruined him before, kept him from returning to his best self behaviorally; it has been over a decade since I've seen and held that calm child.

But what do I know? Perhaps he is exhibiting sub-clinical seizure activity. Maybe he has a tummy ache. What kind of role are pubescent hormones playing? Somehow, though, I doubt these are what's at major play; my gut tells me the drugs are the culprit. In any case, we'll just have to ride this wicked wave and see.

difference in an insular world

A sharp girl in the front row asked me how long Calvin's longest seizure was. She and some of her classmates gasped when I told them it lasted for forty-five minutes. I went on to describe how, because the emergency medications meant to stop the seizure hadn't appeared to be working, my husband and I had thought our son might die. Calvin was two years old. As I panned the classroom, what I saw looking back at me were fresh, young faces wrought with deep concern and empathy.

The sixth graders' other questions were varied, thoughtful and many, curious minds a sign of intelligence:

What was Calvin's first word?

Does anyone else in your family have epilepsy?

Will Calvin ever be able to have a job?

Does Calvin have any siblings?

Who helps you take care of Calvin and do you have a job?

How many kinds of seizures are there?

How do you make a seizure stop?

Will Calvin ever grow out of his epilepsy?

How does Calvin communicate?

I had come to talk to the students about disability and difference, and to answer their questions about Calvin and his epilepsy since he can't do so for himself. When I spoke about cannabis, telling the students how the oil I make from the herb has virtually eliminated Calvin's daytime grand mals while also helping him better endure and complete a four-year-long benzodiazepine withdrawal, one student asked me why marijuana is federally illegal.

There was not sufficient time left in the social studies class to go into much detail, so I summarized by saying that marijuana was outlawed a long time ago (in the 1930s) because of greed and racism. Had I time to explore the nuance I'd have mentioned the corrupt government officials who leveraged fear and racism to justify making marijuana illegal. I would have said that cannabis remains illegal because these same forces are still in play.

I wish I'd had time to delve deeper into marijuana's history and tell them the truth about the deceitful, racist head of the Bureau of Narcotics, Harry Anslinger. I wish I'd been able to tell them about the pressure and collusion from DuPont and Hearst who feared hemp as a rival to their plastics and paper. I wish I'd been able to explain how wrong the War on Drugs is, how hard and unjust it has always been for People of Color and their communities, how criminal it is for our government to falsely insist that cannabis is as dangerous as heroin, claiming it possesses no medicinal properties, while simultaneously holding a patent on cannabis for its neuroprotective and anti-inflammatory properties. I wish I could have told them that the worst people in government and the private prison industry are hell bent on locking up folks—particularly minorities—for low-level drug offenses like simple marijuana possession, and keeping the millions wrongfully languishing behind bars from getting out.

Though I was unable to school the students on the history of cannabis, I hope I may have planted a seed in their brains about an amazing medicinal herb that has gotten a bad rap. I hope, too, that I got them thinking about disability and difference. Perhaps I inspired them to go a step beyond tolerance—because tolerance is not good enough—by befriending and embracing those like Calvin and others who may look, act, sound, dress, speak, live, love and worship differently from themselves. I hope I sparked inside them the desire to stick up for the bullied and disenfranchised and to openly and unabashedly condemn the cruel, unjust and hateful whether they be adults or children.

The night before my presentations, Michael and I watched the film Son of Saul. From its first scene I was gripped and unsettled, witnessing a grim cinematic account of the inner workings of Holocaust concentration camps. I'd seen horrific photographs and films taken of the camps when I visited the Holocaust Museum in New York last May. In my twenties, while backpacking solo through Europe for seven months, I'd visited Dachau. And yet, scenes of Jewish men scrubbing the human mess that awashed the gas chamber floor nauseated me. Still, I clenched my teeth and fixed my eyes on the screen, feeling I should bear witness to their suffering, my own discomfort but a whiff of what Holocaust victims and their families endured. Had the sixth graders already studied the Holocaust I would have told them that children like Calvin were some of the first scapegoats to be rounded up and killed by the Nazis because they were deemed a stain on the Aryan race.

Frighteningly, this world is still rife with this kind of hate and savagery, our own nation led by an insecure man who incites fear, denigrates and scapegoats immigrants, dehumanizing them by calling them animals, a man who maligns People of Color, shows contempt for the poor, mocks the disabled, and enacts policies harmful to every kind of human save the straight, White, wealthy few.

For an hour I spoke to each class of sixth graders fielding their thoughtful questions, their faces gazing at photographs of my son on a dry-eraser board. At the end of the second session, a girl with dark braids and features which I took to be a beautiful blend of races, hopped off of her chair and embraced me. She hadn't asked me any questions, but it seemed she grasped my message, which was one of trust, love, worth and understanding of difference in an insular world.

Photo by Michael Kolster

how it goes

At two o'clock this morning I woke to my restless son needing to be laid back down and covered up because he can't manage to do so by himself. Just before falling back to sleep, I had to get up again half an hour later, then at three and three-thirty. Calvin's diaper was wet, so we changed it thinking it was the source of his restlessness. But with a dry diaper on, he remained antsy, so I crawled in next to him and put him in a "mama lock" (my leg over his legs, my arm over his arms with his head resting on the soft spot between my chest and shoulder) hoping this kind of body swaddle might ease his agitation. It didn't, and neither of us fell back to sleep until Michael rescued me at five-thirty when I managed to get a bit more shut-eye.

I wish I could say this was an unusual night, but I'd be lying. In fact, the lion's share of my nights are similar, at least when it comes to waking often to reposition him, which is why I am chronically sleep deprived. It's just how it goes.

While lying awake next to Calvin, I pondered the various remedies we've attempted to thwart his seizures and reduce his restlessness, plus some remedies we haven't yet tried. It occurred to me that I ought to look into making a second THCA cannabis oil by using an indica strain rather than a hybrid, for giving to Calvin at bedtime, since indicas are relaxing while sativas and hybrids are thought to be somewhat stimulating. Nearly five years ago I had chosen a hybrid cannabis strain called Chemdog because I wanted to avoid sedating Calvin during the day, and it has helped to quell virtually all of his daytime grand mal seizures. Now, however, I am wondering if the Chemdog, in the absence of the CBD (which we eliminated some weeks ago because it appeared to be triggering some of Calvin's complex partial seizures), might be causing some of his insomnia and restlessness. Up until now I was wholly convinced his restlessness and insomnia were the product of benzodiazepine withdrawal (I've read about this sort of thing happening) and while benzo-as-culprit still makes the most sense to me, perhaps I should be open to the fact that it could be something else all together, or a combination of factors.

So tomorrow I'll call Remedy dispensary and see what they might have in terms of a high THCA indica strain. Little doubt they'll be able to help me out, and if so, I'll make the oil, give it to Calvin at bedtime for awhile and see if his sleep and/or seizures improve. If not, my next strategy is to introduce a CBDA oil that I've enlisted someone to make for him.

As always, I'll let you know how it goes.

Making my THCA cannabis oil

serendipity

I'm not quite sure why the image below turned out the way it did. I didn't consciously do anything different when I took it, but there is something about it that I like: its whiteness, its clarity on one side, its nebulousness and blanching on the other. Call it serendipity. As someone who doesn't believe that things happen for a reason—except for things in my control and definitely not including things like Calvin being put on this earth disabled and suffering to teach peons like me a lesson—I can dig happenstance when it turns out good.

Speaking of which, it is notable that Calvin, after having had his last dose of the benzodiazepine clobazam, aka Onfi, just over six weeks ago, and having eliminated his CBD cannabis oil last Tuesday, has seemed to be calmer and happier for the most part. His sleep has especially improved after yanking the CBD (he remains on my homemade THCA cannabis oil that he started taking over four years ago.) So, too, he is going into his second month holding at just three grand mals in as much time, which is a 25% reduction at the very least and a 50 to 60% reduction over his worst months since beginning his benzo wean four years ago this month. Furthermore, he seems to be having seizures on fewer days, and my hope is that, over the long run, he will endure fewer partial complex seizures without CBD.

It is still early, however, so everything could fall to shit over the course of a bad day or two, or an illness. Luckily, Calvin has been surprisingly healthy virus-wise this school year, probably because he has built up a good immune response probably due to the fact he drinks bath water and likes to lick surfaces, including the bottom of his shoes, and partly because he takes probiotics and eats so well—spinach, yogurt, berries galore, almonds, meats, beets and colorful fruits, prunes, carrots, broccoli, fish, eggs; he likes it all.

So keep your fingers crossed and knock on wood again. My hope is, as the benzo withdrawal slowly loses its grip, that Calvin will have only one or two grand mals on average each month. Wouldn't that be serendipitous?

cbd update

This morning's deluge feels apropos after weeks of poor sleep and the stress of deliberating the next step in Calvin's epilepsy regimen; I felt the need for an emotional cleansing of sorts. After much inner thought and analysis, some discussion with Michael and a little with his nurse, I decided to discontinue Calvin's small dose of CBD cannabis oil, at least for now.

The change in treatment, which I commenced yesterday, came after too many nights of a restless child who'd sit up and whack his head against his bed's safety panel every ten to thirty minutes on average. Every time Calvin does this one of us has to get out of bed to go lay him back down and cover him back up. This can happen close to a dozen times each night, depriving us all of sleep. A couple of weeks ago I began wondering if, perhaps, this behavior could be due not only to Calvin's benzodiazepine withdrawal—he had his last dose just over a month ago—but to his CBD cannabis oil. I came to this conclusion knowing that CBD and benzodiazepines like Onfi, the one he was on for so many years and weaning for nearly four, utilize the same liver cytochrome P450 to metabolize and, thus, interact with each other. It occurred to me that in Onfi's absence, the CBD might have the latitude to act differently. 

I went onto social media and posed the question—whether CBD can seem to cause restlessness, agitation, insomnia or problems getting to sleep. The answers I got were mostly "yes" including various accounts saying that large doses of CBD are sedating while small doses of CBD can alert or stimulate. Some parents advised not to dose it after four or six p.m. Others said it depends on the strain, confirming what I know about sativas and hybrids being more stimulating than indica strains.

Having cut Calvin's CBD dose in half late last summer and again last fall, I noticed a reduction in partial complex seizures. In eliminating his CBD I hope to see less agitation, improved sleep and perhaps even fewer partial complex seizures. We will see. As always, cross your fingers and knock on wood. You'll be hearing from me.

Photo by Michael Kolster

hemmed in

If you look closely, you'll see me in there somewhere, the edge of my mostly-auburn hair mingling with leaves and twigs, baggy bloodshot eye, wearing my shabby blue fleece robe that our neighbor thinks makes me look like a ward from an insane asylum. His estimation is fitting. One of us might be heading there, Calvin or I.

After yesterday's string of partial complex seizures—one every hour from eight-thirty until two—Calvin was impossibly restless on either side of last night's grand mal. This morning he is still unhinged, his repetitive humming and growling having not let up after hours on end. The kid is certifiably nuts, and he's sending me there. Both Michael and I tried sleeping with him, hoping to calm his inner demon so that everyone could get some rest, but because of Calvin's derangement, which must be some sort of benzo withdrawal symptom, sleep proved elusive for all of us ... again.

While walking Nellie yesterday in near-freezing, bone-chilling winds, I sat on a stump in the sun. It was then that I noticed my right eye hurting. That morning, Calvin had inadvertently stabbed it with several rigid fingers. Each time I blink, it hurts. Squinting, I looked out over fields, still covered in snow and flanked on all sides by naked oaks, maples and white pine of the same size—a wall of trees, really. Much of Maine makes me feel this way: walled in. These parts are mostly flat, and considering how close we are to the ocean as the crow flies, it takes some driving to get to a place with a decent vista much less a wide beach or clear view of the open sea. The experience I have at home raising Calvin, hemmed in by these four walls and by his condition, is the same one I have in Maine. I think I'll call it hemmed-in syndrome.

Perhaps if I were younger and not in love I'd run away from my reality. Last night things were very nearly as bad as it gets save trips to the hospital or the hours of night terrors Calvin sometimes suffers and we somehow cope with. It's these times when I imagine leaving my family behind and escaping to a place with mountains and hills right in my backyard, with ample and easy views of horizon meeting sea, of endless beaches minutes away and springlike weather year round. I'd go somewhere cosmopolitan where throngs of people busy the streets, where restaurants are bustling, where there are decent cafes and gorgeous parks in which to linger and explore, and interesting neighborhoods through which to tread for hours. I'm talking about a place like my beloved San Francisco. Maybe even LA. Perhaps some day I'll get back there and stay.

But for now I am here at home, today with my manic child. In doing endless loops with him around the house this morning, he stopped and I stood to block his incessant staring at the sun. Looking up, I saw this photo on the wall, one Michael made a couple of years ago. In its glass I saw my reflection, though dark, as well as windows through which I could see trees and light from outside. I exchanged tepid coffee for camera to capture the image. Then I dove into the windy scene of branches, leaves and sky—but for a divine moment no longer hemmed in—becoming a virtual traveler through time and space to a place without Calvin or angst, sleeplessness, seizures and mania, far beyond these walls which hem me in.

getting back

I've mentioned before how epilepsy has a way of catching up, of getting back. Well, after twelve days with no seizures at all, Calvin just had his fifth scary partial complex seizure today. I say scary because, besides his pale lips and shallow breathing, he gets this look on his face as if he's seen a monster, or perhaps his imminent death (if he could comprehend such an abstract notion.) Frantically, he grabs for me, and his body begins to tremble and shake violently. These are not a grand mals; he remains conscious and his tremors are not rhythmic.

The extra doses of THCA oil I have given him have not prevented each subsequent seizure, so, grasping at other remedies, I took the bottle of CBDA vegetable glycerin the folks at Palmetto Harmony sent to me and gave Calvin ten drops. A month or two ago, I had an epiphany that perhaps CBDA oil might help Calvin if he continues to suffer too many seizures in the wake of finally eliminating his benzodiazepine. Right now, I've got the Mozart playing (I read a study, albeit a small one, which showed that listening to two hours of Mozart a day reduced seizures in a majority of subjects by as much as fifty percent) while watching my boy closely for any signs of another partial seizure.

My next big plan once we are a month or two away from Calvin's last dose of clobazam (we are just over three weeks past it now) is to stop his CBD oil to see if his partial seizures disappear or if it makes a difference at all; reducing it in the past has seemed to lessen his partial seizures. I may replace it later with a CBDA oil to see how that affects his seizures.

Thankfully, though, the past week or so Calvin has been an angel with the exception of some brief manic episodes on most days. He has been compliant and walking well and strong. He has been smiling and happy and enjoying hugs and kisses and tickles. He has been sleeping pretty well and has had only one grand mal seizure in nearly three weeks.

But like I said, epilepsy has a way of getting back. March, which came in like a lamb, might go out like a lion. And he had his sixth partial complex seizure just now.

Calvin during a similar partial complex seizure years ago