unthinkable

Tropical depression Henri didn't make landfall in Maine, but we had low barometric pressure and insane humidity anyway. It seems the full moon also helped tug Calvin's seizures into existence—he had one grand mal at nine p.m. on Sunday, and another at three the next morning.

Last night, after putting Calvin to bed, Michael and I ate barbecued salmon and sushi rice with spicy fish sauce while watching the last half of the film, Aliens. During one of many grisly scenes—at the very moment when an alien burst through the chest of its wide-eyed, terrified human host causing her to convulse—we heard our son shriek. It was his third grand mal in less than a day. We sprinted to his room where we found him tangled in his blanket, convulsing, his lips a dusky blue.

"I'm going to give him the Diastat," I told Michael, who expressed unease with my decision to employ the benzodiazepine because they can be so problematic.

But my brain and my gut said, do it!, so I grabbed the vial from the changing-table drawer, cracked off its plastic cap and squirted lube onto its tip. While Michael kept our boy safely on his side, I unsnapped the crotch of Calvin's onesie, ripped open and pulled aside his diaper, then carefully inserted the tip of the vial into his rectum, depressing its plunger slowly. My intent was not to stop the seizure which had already begun to subside, but to thwart a probable fourth, perhaps more devastating one, from occurring in the night.

The Diastat knocked Calvin out. Benzodiazepines like Diastat, aka rectal Valium, can cause respiratory suppression, and since SUDEP (Sudden Unexpected Death in Epilepsy) is thought to occur within twenty minutes after a grand mal, I wanted to monitor him for awhile. So I brought our unfinished meals and glasses of wine into Calvin's room, plus a chair for Michael. With my plate in my lap, I sat on top of the changing table where I could easily see Calvin's chest rise and fall. Holding vigil, we ate the rest of our dinner in the dim light of the small room grieving the impossibility of our child and his sorry lot in life.

As we munched our salads, Michael expressed regret about Calvin's unthinkable limbo: he can walk, but can't—or won't—walk well enough to stroll any distance down the street, in the woods, or at the beach, and yet he cannot sit still; he can see, but we can't know what or how well; he can manage finger foods, but cannot use a spoon; he can swallow, but sometimes chokes on food and drink; he is having some success sitting on the toilet, but he still has to wear diapers and can't poop without the use of suppositories; he cannot speak, so sometimes it's near impossible knowing what he might need, understand, feel, suffer or think; he's right there, but so often he's out of reach. In short, he's an unthinkable enigma.

Finishing our dinner, we discussed the paperwork we have to complete and submit to probate court in order to be granted guardianship of Calvin when he turns eighteen in February. Yes, even though we are his parents, we must apply to become his legal stewards since he can't make decisions for himself. One assurance we've been asked to give is that we will continue to provide Calvin with activities he enjoys. As if his suffering from seizures and/or drug side effects isn't regrettable enough, the list of things that give Calvin joy is extremely limited; he likes hugging, baths, music, car rides, swings, sweets, and a few baby toys. He doesn't have friends. He can't do sports. He doesn't know how to play with trucks or dolls or games or Legos. He can't run or ride a bike or play catch or swim in pools, lakes, rivers or seas. He doesn't watch movies or cartoons. He can't walk the dog. He can't write or read or camp or bake or fish or hike. He is capable of doing just enough to avoid being confined to a wheelchair or to a bed in a room, but he can't do most of the things that make most kids feel happy or truly free.

This enigmatic and beloved child of ours lives in a limbo alien to most, one he'll likely endure his entire life. Oh, how I wish him to be free of his unknowable, unthinkable miseries.

waiting for the day

For nearly fifteen years I've been dreaming of and waiting for the day when my son could amble around the yard by himself. Since Calvin was about three, he has appeared to be on the verge of walking without me holding his hand, harness, elbow or shirt, or slinging an arm around his neck or waist.

Sadly, just before Calvin took his first steps in earnest when he was two and a half, he was on a pretty high dose of the powerful antiepileptic, Keppra. Judging by the way he walked as if he were drunk and/or aboard a rocking ship, it must have made him dizzy. Poor kid. When I think about the legion of awful drug side effects my tiny boy has endured for so many years, I feel sick.

With time, Calvin's balance has been getting better, but most especially during the pandemic. My guess is the improvement is due to the gradual reduction of his one remaining pharmaceutical, Keppra. Though we ditched it before he turned three, we went back to it when he was six or seven. We've allowed him to gradually outgrow his "therapeutic" dose, and more recently we began reducing it because it doesn't appear to be doing jack shit. His dose (mgs/kg) is now half of what it was years ago. It might be my imagination, but he seems slightly calmer lately. Moreover, he has not had any seizures in twelve days, which is equal to his longest stint since March (though I think he's on his way to having one tonight.)

Getting back to his walking, this is the first summer that I've been able to let him get a distance from me without worrying (too much) that he will fall and hurt himself. I still stay nearby to spot him, especially when he walks on the stone path or in the narrow spaces between the rock borders of the perennial gardens, but the kid is doing decently well balance-wise. And though his gait is wonky as ever, I almost never see him teeter backwards anymore. Unfortunately, I still can't leave him on his own because he's prone to sit on the ground staring at the sun and/or sweeping blades of grass, twigs or bark into his mouth. But I can relax from my usual hypervigilant state for fleeting moments just to pull a few weeds or deadhead some flowers, and for that I am most grateful.

all-nighter

I didn't really see it coming, at least not completely. Calvin had had a good day; though restless as usual, he was quiet, smiling at times, eating well. Michael and I had just finished dinner in front of a rolling fire. We had settled into our books (I'm in the middle of reading Jane Eyre) while FIP French radio played in the background. Just as I was luxuriating in a breadth of bluesy music and the soothing voice of the female DJ, I heard a screech come through the baby monitor. Though it had only been two days since Calvin's last grand mal, I knew he was seizing. I took the stairs by twos.

When the violent fit was over, our poor boy again had some trouble breathing. Whether excess fluids are obstructing his airway or his throat is constricted by aftershock spasms, it isn't clear. The good thing is he rarely turns blue during seizures anymore. Though it was only eight-thirty, I brushed my teeth and slid into the small space next to him in his safety bed. Thirty minutes later he woke quite agitated, his heart racing, his clammy fingers knitting in a panicked frenzy. This went on all night, every thirty minutes or so. Before midnight, I gave him extra THCA oil, but to no avail. I patted his back to help him burp, held him in my arms, stroked his face, kept him from careening out of bed. Somehow I managed to get a little shut eye before his second grand mal at half past three. Shortly thereafter, he settled for a bit, then woke again when he wet the bed. I scooped him up best I could using my legs and not my back to lift his eighty-five-plus pounds of mostly dead weight. His hands were frigid, but his face felt hot. His teeth were chattering, so I checked his temp, which was normal. I changed his diaper, and Michael, who had since woken, changed Calvin's pajamas and put him back to bed. I crawled back in next to him. Half an hour later he was up again, trying to bang on the wall and patting the side of his bed, so I gave him his morning seizure medicine early, hoping he'd settle. He didn't.

Much of my time awake I spent trying to think of another strategy to curb Calvin's seizures. I could increase his one pharmaceutical, Keppra. I could decrease the THCA since I've never really tried that; after all, high doses of any antiepileptic drug, even cannabis, can exacerbate seizures. I could try the Palmetto Harmony CBD oil again. I have an unopened bottle of it in the refrigerator; years ago, Calvin went forty days without any grand mals on just twenty milligrams of the product. However, when it quickly seemed to lose its effectiveness, we eliminated it from his regimen.

It's maddening, this epilepsy. Nothing I do seems to help quell his seizures. My boy suffers headaches, lethargy, restlessness, agitation, bitten and bloody cheeks and tongue, insomnia, panic attacks. My guess is he also experiences auditory and visual disturbances of some sort. I've little doubt that he's been ruined by the drugs which I believe are the root of his disquiet. For years he has not been able to sit still in our laps for longer than a couple of minutes unless he is sick or postictal. To be honest, the future looks bleak, which is not to say I've lost hope.

Today, Calvin is resting and recovering in bed. I'm perched on his changing table writing and wishing we were able to take a car ride. He hasn't had much to drink and nothing at all to eat. He's got dark circles under those gorgeous sand-and-sea eyes of his. There's every indication that this spate of seizures is not over. I hate to say it, but we may be in for another all-nighter.

One such day last summer

herculean

i'm about at the end of my tether. tapped out. at my wit's end. i'm burnt to a crisp. this pandemic thing—which didn't have to be as bad as it is, with over 400,000 americans dead—is doing me in. and i know i am not the only one. having said that—and before i continue—i must express my gratitude and acknowledge my privilege that my husband still has a paying job, we're comfortable and well fed, and none of our friends or family members, even the ones who got covid, are dead.

still, time spent with my son while he's been home from school since last march has been a struggle, especially of late, probably because of winter and because the stress is cumulative; nearly seventeen years of spoon-feeding and changing diapers and pulling up his covers in the middle of the night can get to a person, not to mention his seizures and behaviors associated with the antiepileptic drugs he takes. days are mind-numbingly monotonous. the weather doesn't always cooperate for our walks outside in the garden and back meadow. he's so demanding, intense and gropey, if that is even a word. sometimes he shrieks and grouses and cackles so much i want to scream. all too often i give in to the emotion.

i continue to wonder how the hell i am going to do this for the rest of my life, while at the same time cringing at the notion of strangers taking care of him, what with the high turnover in most group homes. neither seems like a good solution. both give me pause, thinking of a way out of this conundrum.

i sometimes find myself dreaming of being childless and single, able to do whatever i please and go wherever i want to go whenever i want to. i know i am not alone. i think of my mother and wonder how she cooked and cleaned and shopped and laundered for six kids and my father. herculean, really. but we're all doing it in some form or other during this pandemic.

candlelight vigil

In my dreams as a kid I used to smell death. The scent was sickeningly sweet. Typically, no one in my dream had died. It was just a sense that came over me, a notion more so than an aroma, that death was somewhere nearby. In any case, it made me queasy.

Last night at six-thirty, Calvin had a grand mal. It was only day three since his last one, and an unusual time of night for him to seize. No interventions were necessary but to lay our hands on him and kiss his neck. In its wake, he was more fitful than usual, couldn't lay down or sit still. Eventually, though, he settled and we pulled the covers over him as he fell asleep.

Sudden Unexplained Death in Epilepsy (SUDEP) is thought to be more common in the twenty minutes, or so, after a grand mal. So, I remained with Calvin while Michael brought up our dinner which we were just about to eat when we heard Calvin seize. Michael pulled a chair into the room and set a lit candle on Calvin's dresser among his various medicines. I sat on Calvin's changing table with my plate in my lap. We ate our dinner bedside, a candlelight vigil, lamenting Calvin's struggles and stresses, wondering if he'd one day succumb to SUDEP, then deciding finally he's too much of a fighter to submit.

After sleeping peacefully for hours, this morning at four Calvin woke to a focal seizure. The fit was long. He wasn't breathing during part of it. I syringed his morning THCA cannabis oil into the pocket of his cheek and under his tongue. Finally, he came out of the seizure, then fell right back to sleep. As I had feared, an hour later he suffered a second grand mal.

As I laid in bed next to him my mind wandered. I wondered how many seizures a brain can handle. I listened to the songbirds outside his window feverishly making themselves heard. I remembered how the only word Calvin ever said—just once—was Mama. That was before the seizures and drugs started to do their hurtful work on his development. After half an hour I returned to my own bed. I tried to get comfortable, focusing on relaxing my jaw and face muscles. Eyes closed, a hint of that death dream-smell came over me. I held Michael's hand. I thought of my friend Woody, of the little girl Charlotte who had epilepsy and died from probable complications of coronavirus. I imagined the candlelight vigil of the night before. I never did make it back to sleep.

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.

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.

what to do?

I'm at a loss. Not sure what to do to lessen Calvin's seizures. It's not that they're raging off the charts, at least not for him; relatively speaking they are holding at about the same number that he's had the past several years, which is about five or six grand mals per month plus a smattering of focal ones. But because of them he's missing too much school. Since starting in September, he has been absent for a total of nearly four weeks. So the status quo is not sustainable. I have to change something, but what? I do not know.

I can't decide whether I should increase his CBD oil or remove it for a spell. I don't know whether to replace it with a plant-based pharmaceutical version of it called Epidiolex. I'm not sure whether my latest batch of homemade THCA oil is as effective as the last one, or if I'm giving him too much, too little. I'm loathe to try any other traditional pharmaceuticals since, having already failed ten of them, the chance Calvin will respond to subsequent ones is minute, i.e. less than five percent.

I wish I had a crystal ball that could tell me what to do.

Thankfully, Calvin has been much easier to care for these days. He's been calm, cuddly and compliant—opposite of the way he was when he was drugged up on high doses of three powerful pharmaceuticals which suppressed, though did not stop, his seizures. Nowadays, keeping him home from school in itself is not as much of hardship as it used to be, it's just happening too often and it means I can't get much of anything done—can't read, can't write, can't walk Smellie, can't exercise, can't grocery shop, can't do chores.

Today will be Calvin's first, hopefully full, day of school this week. He's not even halfway through the month and he's already had four grand mals and at least two focal seizures. Something has got to give. I just don't know what that something is.

Photo by Michael Kolster

in case you didn't know

Epilepsy can kill. It kills our children, our parents, our grandparents and our siblings. It is not a benign disorder for which you take a pill and everything is okay.

Epilepsy affects over three million Americans of all ages, as many as 300,000 of whom are children under fifteen.
Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.

About 200,000 new cases of epilepsy occur each year and it is estimated that up to 50,000 people will die every year from epilepsy or seizure-related causes, such as drowning. These numbers are nearly identical to breast cancer and yet epilepsy is still an obscure disorder to most people. Epilepsy is stigmatized, misunderstood, feared, overlooked and grossly under-funded.

Those who have epilepsy and are lucky enough to have their seizures controlled by medication suffer drug side effects which can be debilitating and sometimes lethal. Side effects include dizziness, headache, nausea, poor coordination, visual disturbances, trouble with balance and gait, insomnia, drowsiness, confusion, abnormal thinking, fatigue, hyperactivity, agitation, aggression, depression and suicidal ideation, just to name a fraction.

Those who don't benefit from medication risk brain damage, cognitive decline, hospitalization, exorbitant medical bills and sudden death.

Quick facts:

• Epilepsy affects 65 million people worldwide.
• Epilepsy affects over three million Americans of all ages, just over one in 100 people. Over 300,000 school children through age 15 have epilepsy. Almost 500 new cases of epilepsy are diagnosed every day in the United States. 
• In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
• One in twenty-six Americans will develop epilepsy at some point in their lifetime. 
• Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.
• In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.
• The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal. 
• It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. 
• The mortality rate among people with epilepsy is two to three times higher than the general population, and the risk of sudden death is twenty-four times greater. 
• Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, intellectual disability, autism, Alzheimer’s disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes.
• There is a strong association between epilepsy and depression: more than one of every three persons with epilepsy will also be affected by depression, and people with a history of depression have a higher risk of developing epilepsy.
• Historically, epilepsy research has been grossly under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.
• For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence. 
• SUDEP: SUDDEN UNEXPECTED DEATH IN EPILEPSY FAQs

David Beauchard, illustration from his graphic novel, Epileptic

overnight in september

Overnight, autumn arrived. The wind chilled, leaves turned rose and yellow, pine needles and temperatures fell. Overnight, Calvin suffered his sixth grand mal of September. In addition to those, he had two focal seizures, totaling eight for the calendar month. And though one seizure is one too many, I'll take eight over August's fifteen.

As I look out over the garden, now dark and damp after last night's rain, I remind myself that Calvin, though he continues to have reliable seizures, rebounds from them so much better. Gone, it seems, are the hours he used to spend perseverating, hyperventilating, fingering, heart racing in the wake of a grand mal. He—we—would often be up for hours unable to settle, and deprived of most precious sleep.

Seated in my creaky wooden chair, I regard the gangly lilac trembling in the wind outside my window and I think of Calvin who has grown so much since June, his limbs long and lean, his gait often unsteady as if he could be toppled by a breeze. Amid these weekly and biweekly seizures, I console myself knowing he is on far less pharmaceutical medication than in recent years, and yet not suffering a huge, sustained uptick in seizures. I just wish we could find a way to lessen them to the level he had (half a dozen to none) when he was on enormous doses of three powerful antiepileptic drugs, without suffering the unbearable behaviors those drugs caused. Even then, his number of seizures reliably crept up each month until we increased his medication, leading to a vicious and unsustainable cycle.

At times, on good days, I see glimmers of a more normal child in the gaze of his sky-blue eyes. I keep hoping, as he gets older and stronger, Calvin might outgrow his plight, just as robust plants are less susceptible to disease. Or perhaps the epilepsy will go dormant, like what happened to some trees as if overnight in September.

Photo by Michael Kolster

game changers good and bad

coming of age in san francisco and all i left behind there. michael. maine. marriage. devastating sonograms. hospitals. emergency cesarean. calvin. essential and unnecessary intubations. grief. relentless seizures, including this morning's, the forty-five- and twenty-minute ones. antiepileptic drugs and their side effects. benzodiazepines and their heinous withdrawal (calvin). loss. acute and chronic sleep deprivation (mine). diapers that fit (calvin). honesty. turning off the bed-stand baby monitor. tenure. finding a voice. partner doctors. conceited ones. despair. writing daily. palmetto harmony CBD oil. mothers and fathers of other kids like ours. curaleaf bud and homemade THCA cannabis oil. kick-ass nurses. washable bed pads. angst. the love of a child. onesies. attentive, understanding, open, reliable, responsible school staff. sabbatical. smellie the wackadoodle. the kindness of strangers. gratitude. less medicine rather than more. tenderness. slow cookers. slow-cooker chef-hubby. every single dinner he fixes. state medicaid. the ease of small towns. patience. good cries. walks on the beach on days like the autumnal equinox.

spooning

This morning at three-forty-five I crawled in bed with our son Calvin for the umpteenth time in his fifteen years on this earth. He had suffered a tonic-clonic (grand mal), and when it was over I slipped into the small space between him and the back panel of his safety bed. There we spooned, my hand resting on his ribs feeling the rise and fall of his chest, his knees tucked up in fetal position. I stay awake as long as I can to ensure he doesn't stop breathing and die from SUDEP (sudden unexplained death in epilepsy). His risk of dying from SUDEP is greater than 1 in 1000 in any given year because of the nature of his seizures (uncontrolled tonic-clonic) and cognitive impairment.

Our first time spooning was when he was breech in utero, before I'd ever met him, before the dreadful sonogram revealing his brain's enlarged lateral ventricles and substantial lack of white matter, before the emergency cesarean, before the subsequent seven-week stay in the hospital. I'd rest my palm on my gravid belly on top of a bulge I was certain was his little head. Since then, when he sleeps with us, he loves to touch and press heads, and will pull us toward him, his hands around our necks.

When he was an infant and toddler, we'd regularly nap together. He'd curl up into me like a little bird in a nest. He used to be so calm, but since having to take antiepileptic medicines—particularly benzodiazepines—his body has a hard time quieting; he is so very restless. Still, at times, usually when he is sick, he settles enough to nap next to me or in my lap.

I've spooned with him in the hospital after ten-, twenty-, forty-five-minute seizures. I've spooned with him on the floor, on the couch, in his and our bed. Tiny for his age, he's getting bigger fast, but he still loves sitting in our laps for a spell, embracing us, clinging to us in bed.

2007

curses

For the past two days I've been channelling my inner Joan Rivers, my best Samuel L. Jackson, my George Carlin, cursing worse, even, than Andrew Dice Clay. With paper-thin patience, I've been struggling to not let my kid drive me crazy with his constant grousing. Needless to say, I'm failing. To make matters worse, Michael has been out of town for three days at his solo photo show at the Telfair Museum in Savannah, thankfully to return any minute, so I've been flying solo since Thursday evening.

I haven't been counting, but I'm certain I've spat—at least once—most of the words on George Carlin's list of things you can't say on TV (think of the worst swear words possible) plus a peppering of other foul curses. I'm exasperated, sleep deprived and irked. Calvin has been intense the past two days, at times devolving into sudden manic tantrums, the source of which, since he can't tell me, I can only guess are either gas pains or a side effect of his Keppra, namely emotional lability.

I'm so fed up with listening to him shriek and whine and grouse all day for two days, and I'm sick of listening to myself at times respond with such ugliness. The scowl on my face feels etched in so deeply I wonder if it will ever fade.

Photo by Michael Kolster

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.

if-onlies and might-have-beens

Foul is the smell coming from my son's mouth, as if there's something rotting inside him. It stinks like a festering wound. I think some of it might be blood from having bitten his tongue during the seizures he suffered the other night and this morning. Of late, the grand mals are coming in clusters—nine in the past month.

These seizures, drugs and side effects have been ruinous for all of us in some form or another, and there's really no end in sight. Calvin can't stay still for even a few minutes. It's called akathisia, the movement disorder characterized by an inner feeling of restlessness due to the use of antipsychotic drugs. I know for certain it's a side effect of the benzodiazepines Calvin was on from the age of three until fourteen. Keppra is also a culprit. I fear they've changed my boy's brain forever. Ruined. Devastated. Wrecked. I despair thinking of all of the if-onlies and might-have-beens.

Forlorn, my antsy boy held briefly in my lap, I remember Michael's notion that music will save the world, so I get up and turn on FIP (France Inter Paris) radio network. I've been tuning in a lot lately, and it's eclectic music and ticklish French accents have been a saving grace. The second song, River Man by Nick Drake, is gorgeously sorrowful and familiar. A few of its lyrics always bring me to tears.

Betty said she prayed today
For the sky to blow away
Or maybe stay
She wasn't sure.

I'm not a praying gal, but sometimes, like when Calvin can't settle, is manic or is in the thralls of epilepsy's fits and I feel myself sinking, like Betty, I find myself wishing for the sky to blow away. Other times, like when Calvin can remain in my arms for extended periods, looks straight into my eyes, or when I see him smile and give Michael hugs and kisses, I'd grip fists of that sky forever.

the trouble with keppra

May has been another rough month; Calvin has suffered eight grand mal seizures, three of them within thirty hours, though just two focal (partial) seizures. In April he had just one grand mal, though ten focal seizures. A recent EEG captured one of this month's grand mal seizures, plus a number of focal and generalized "discharges," which were explained to me by Calvin's neurologist as possible precursor to seizures which never emerged. Other suspicious behaviors, however, such as space-outs, finger stimming, flushed cheeks, shivers and jerks, rapid breathing, eye pressing, tummy grumbles, ear rubbing, insomnia with repetitive humming, clammy hands, rapid, pounding heartbeat and other panicky behaviors were reportedly not seizure related.

This news made me wonder if Calvin's suspicious behaviors are drug related, including the uptick in seizures after having increased his one pharmaceutical, Keppra, in early March to account for weight gain. So, in my ceaseless sleuthing to unearth ways to reduce Calvin's seizures and improve his quality of life, I went back to the Internet to study—for the umpteenth time—Keppra's side effects. I read what I had long suspected, that seizures can be a side effect of Keppra. In understanding that most side effects are dose related, and with the knowledge that Calvin has always been on an extremely high dose of Keppra (as high as 86 mgs per kg compared with the mean therapeutic dose of 44 mgs per kg) we decided to decrease his dose by ten percent (from 75 to 66 mgs per kg) to see if the side effects he seems to suffer might abate. It is too early to tell for sure, though his behavior and sleep do appear, generally, to be slightly improved.

Below is a list of Keppra side effects taken from the website drugs.com. I have highlighted the ones I sense Calvin might be suffering. Some of the side effects, such as joint, bone and muscle pain, I can never know with certainty; since Calvin can't speak, I can only presume.

I should note that for some people, like any antiepileptic drug, Keppra works wonders. And, sadly, all antiepileptic drugs have scores of side effects.

In Summary:

Common side effects of Keppra include: infection, neurosis, drowsiness, asthenia, headache, nasopharyngitis, nervousness, abnormal behavior, aggressive behavior, agitation, anxiety, apathy, depersonalization, depression, fatigue, hostility, hyperkinetic muscle activity, personality disorder, emotional lability, irritability, laceration, and mood changes. Other side effects include: tonic clonic epilepsy, dizziness, vertigo, decreased neutrophils, depressed mood, neck pain, and pain. See below for a comprehensive list of adverse effects.

More Common:

Aggressive or angry
anxiety
change in personality
chills
cough or hoarseness
crying
depersonalization
diarrhea
dry mouth
euphoria
fever
general feeling of discomfort or illness
hallucination
headache
hyperventilation
irregular heartbeats
irritability
joint pain
loss of appetite
lower back or side pain
mental depression
muscle aches and pains
nausea
painful or difficult urinationparanoia
quick to react or overreact emotionally
rapidly changing moods
restlessness
shaking
shivering
shortness of breath
sleepiness or unusual drowsiness
sore throat
stuffy or runny nose
sweating
trouble sleeping
unusual tiredness or weakness
vomiting

Less Common:

bloody nose
burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings
clumsiness or unsteadiness
discouragement
dizziness or lightheadedness
double vision
earache
feeling of constant movement of self or surroundings
feeling sad or empty
increase in body movements
loss of bladder control
loss of memory
mood or mental changes
outburst of anger
pain or tenderness around the eyes and cheekbones
problems with memory
redness or swelling in the ear
seizures
sensation of spinning
shakiness and unsteady walk
shakiness in the legs, arms, hands, or feet
tightness of the chest
tiredness
trembling or shaking of the hands or feet
trouble concentrating
unsteadiness, trembling, or other problems with muscle control or coordination

Incidence Not Known:

Attempts at killing oneself
being forgetful
bleeding gums
blistering, peeling, or loosening of the skin
bloating
blood in the urine or stools
bloody, black, or tarry stools
blurred vision
changes in vision
chest pain
constipation
dark urine
difficulty with moving
fast heartbeat
fever with or without chills
general feeling of tiredness or weakness
high fever
increase in body movements
indigestion
itching
light-colored stools
muscle pains or stiffness
painful or difficult urination
pains in the stomach, side, or abdomen, possibly radiating to the back
pale skin
pinpoint red spots on the skin
red skin lesions, often with a purple center
red, irritated eyes
sores, ulcers, or white spots on the lips or in the mouth
stomach pain, continuing
swollen glands
swollen joints
thoughts or attempts at killing oneself
trouble with balance
twitching, twisting, or uncontrolled repetitive movements of the tongue, lips, face, arms, or legs
uncontrolled jerking or twisting movements of the hands, arms, or legs
uncontrolled movements of the lips, tongue, or cheeks
unexplained bleeding or bruising
unusual bleeding or bruising
upper right abdominal or stomach pain
weight loss
yellow eyes or skin

General:

The more commonly reported adverse reactions in children have included fatigue, aggression, nasal congestion, decreased appetite, and irritability.

Nervous system:

Very common (10% or more): Headache (14%), somnolence (14%)
Common (1% to 10%): Dizziness, ataxia, vertigo, paresthesia, coordination difficulties
Postmarketing reports: Choreoathetosis, dyskinesia

Psychiatric:

Very Common (10% or more): Non-psychotic behavioral symptoms (up to 38%), psychotic symptoms (up to 17%)
Common (1% to 10%): Depression, nervousness, amnesia, anxiety, hostility, emotional lability, irritability, mood swings, hypersomnia, insomnia, apathy, tearfulness, negativism
Postmarketing reports: Panic attack

In studies, non-psychotic behavioral symptoms (reported as aggression, agitation, anger, anxiety, apathy, depersonalization, depression, emotional lability, hostility, hyperkinesias, irritability, nervousness, neurosis, and personality disorder) were reported in 38% of pediatric patients aged 4 to 16 years compared to 19% in placebo patients. Dose reduction or discontinuation due to behavioral symptoms occurred in 11% of pediatric patients.

Hematologic:

In pediatric patients 4 to 16 years old, mean decreases in WBC and neutrophils were 0.4 x 10(9)/L and 0.3 x 10(9)/L, respectively, compared to small increases in placebo patients. Mean relative lymphocyte counts increased by 1.7% in patients receiving this drug (placebo=decrease of 4%).
Common (1% to 10%): Decreased white blood cell count (WBC), decreased neutrophil count, increased lymphocyte counts, higher eosinophil counts
Frequency not reported: Decreases in white blood cell, neutrophil, and red blood cell counts; decreased in hemoglobin and hematocrit; increases in eosinophil counts
Postmarketing reports: Pancytopenia (with bone marrow suppression reported in some cases), thrombocytopenia, agranulocytosis

Hypersensitivity:

Postmarketing reports: Anaphylaxis

Dermatologic:

Alopecia reported with this drug resolved with discontinuation of therapy in most cases.
Frequency not reported: Stevens-Johnson syndrome (SJS), toxic epidermal necrolysis (TEN)
Postmarketing reports: Erythema multiforme, alopecia, angioedema

Other:

Very common (10% or more): Asthenia (15%), fatigue (10%)
Common (1% to 10%): Pain, vertigo

Respiratory:

Common (1% to 10%): Pharyngitis, rhinitis, increased cough, sinusitis

Gastrointestinal:

Common (1% to 10%): Diarrhea, gastroenteritis, constipation
Uncommon (0.1% to 1%): Nausea
Postmarketing reports: Pancreatitis

Ocular:

Common (1% to 10%): Diplopia

Hepatic:

Postmarketing reports: Abnormal liver function tests, hepatic failure, hepatitis

Musculoskeletal:

Common (1% to 10%): Neck pain
Postmarketing reports: Muscular weakness

Immunologic:

Very common (10% or more): Infection (13%)
Common (1% to 10%): Influenza
Postmarketing reports: Drug reaction with eosinophilia and systemic symptoms (DRESS).

Metabolic:

Common (1% to 10%): Anorexia
Postmarketing reports: Weight loss, hyponatremia

Cardiovascular:

Very common (10% or more): Increased diastolic blood pressure.

Renal:

Postmarketing reports: Acute kidney injury

Photo by Michael Kolster

sometimes less is more

At the neurologist yesterday, I was very happy to report that Calvin hadn't had a grand mal seizure in twenty-four days—roughly four to five times longer than this year's average span—and that in the past thirty days he has suffered only three days of seizures (compared with a half dozen to a dozen or more in a month's time.)

Calvin's neurologist, a pediatric epileptologist, wondered to what I attributed the abrupt and substantial decrease of seizures in the wake of last month which was peppered with them. I told him I believed it was the recent reduction of Calvin's CBD (cannabidiol) cannabis oil. In mid March, after having experimentally increased it by thirty percent (to 145 mgs/day), then having seen a rash of seizures at the higher dose, we cut it by about two-thirds (to 60 mgs/day) and saw immediate results.

I saw the doc jot something down in his notes.

I spent most of the appointment asking him about other drugs and non-traditional options in case we ever want to try another pharmaceutical besides Keppra. I asked him about Tegritol, Trileptal, Briviact, vigabatrin, Vimpat, cuprum metallicum, magnesium, B12 and Epidiolex. Some of the drugs are primarily prescribed for focal seizures. One of them risks visual disturbances, including blindness. The doc had not seen any compelling medical literature on the alternative therapies I asked about, and confessed to being the kind of physician who relies heavily on traditional Western approaches, (namely drugs). At that point, I remembered how six years ago Calvin's pediatrician and I lobbied hard to convince him that cannabis oil, both THCA and CBD, appear to have decent track records for treating the most stubborn childhood epilepsies. Having finally convinced the neurologist that cannabis was reasonable to try, Calvin became the first patient in the entire Maine Neurology practice to get a recommendation to use cannabis to treat epilepsy. Several months after starting Calvin on a homemade THCA oil, his daytime grand mal seizures virtually disappeared.

When it came to discussing Epidiolex (the plant-based pharmaceutical version of CBD) the doc said he had about ten patients taking it. I asked if he was on the Facebook Epidiolex Discussion Group page. Not surprisingly, he said, no. I told him that I am, and that I'd seen a trend in comments from parents of children having success with Epidiolex at sub-therapeutic doses, i.e. starting and/or remaining far below the suggested starting dose of 5 mgs/kg, and that at high doses, in some people, it appears to make seizures worse. This is consistent with what I have read about whole-plant CBD oil, and what I have seen in Calvin. In other words, sometimes less is more. 

Again, I saw the doc jot something down in his notes.

We left the neurologist's office with a plan for Calvin to undergo a 24-hour ambulatory EEG at home to compare his brain activity to previous EEGs, which were done many years ago. In the meantime, I'm waiting for lab results on my latest batch of THCA oil which I was forced to make with a new strain of cannabis called Mandarin Cookies. I'll be starting Calvin on it sometime this weekend, hoping the transition will be seamless, if not more beneficial. If all goes well, at some point in the near future, as I told the neurologist, we hope to reduce Calvin's high dose of Keppra to see if his behavior—his mood swings, manic laughter, hyperkinesia—improves. Perhaps, at least in Calvin's case, less is more with pharmaceuticals, too.

where to begin?

Where to begin? I guess by first saying that, since I decreased Calvin's Palmetto Harmony CBD oil from 145 milligrams per day down to 60 mgs nearly three weeks ago, (because I thought it might be triggering a particularly bad spate of seizures), he has had just one complex partial and two grand mal seizures. Furthermore, it has been eleven days since his last grand mal which, relatively speaking, is on the longer side of recent things. So, April is shaping up to be a decent month seizure-wise (again, relatively speaking), especially compared to the madness in March.

I use the phrase "relatively speaking" because when I dug out old calendars I was reminded that six years ago Calvin suffered just thirteen grand mal seizures the entire year in comparison to each of the last five years in which he had fifty or more. But I must also remember that in 2013 he was on high doses of three powerful antiepileptic drugs. I must remember that I cried nearly every day having to peel my psychotic child off of the ceiling regularly. My husband and I agreed that no amount of seizure freedom seemed worth that, really. Calvin's and our quality of life was in ruins, and so we began weaning his meds, which had heinous side effects despite rarely giving Calvin more than a few weeks at a time of seizure freedom. Then, in 2014, we began giving him a homemade THCA oil, which virtually eliminated Calvin's daytime grand mal seizures.

Last Thursday, we took Calvin to see Laurel Sheppard, the nurse practitioner in Dr. Dustin Sulak's Maine office. Dr. Sulak specializes in treating various conditions using cannabis; Laurel feilds the epilepsy cases. The appointment, though long overdue, was worthwhile, if only to serve as a validation of the knowledge I've gleaned by doing my own research. Laurel confirmed my understanding that the dosing range for CBD is vast, from as low as 0.5 mgs/kg of weight up to 30 mgs/kg. I learned that the range for THCA is wider than I'd previously thought. She said that many children are doing well taking both CBD and THCA oils, which doesn't surprise me. Others are doing well adding a little bit of THC. She recommended that our next step with Calvin, after seeing how the recent CBD reduction goes, might be to increase my homemade THCA oil, which I had reduced last fall, replacing the morning dose with CBD, and eliminating the late-afternoon dose all together to see if some of his late-afternoon agitation improved.

Laurel's suggestion seemed like a reasonable one, but I was thrown another curveball: the cannabis flower I use to make Calvin's THCA oil, Chemdog—one which I've been getting reliably for the past five-and-a-half years from our local dispensary—isn't available, at least not right now. Moreover, I'm running low on the oil. So, I spent all day yesterday and a good part of both weekend days trying to solve this dilemma. I contacted a bunch of my buddies in the pediatric epilepsy cannabis world. All of them did their best to help. Suffice to say I found no local caregivers who are growing the strain, nor did I find a consistent, concentrated and compatible THCA oil that I could use as a substitute.

Thanks to an amazing, thoughtful, generous woman at the dispensary, named Danielle, I found a solution I think I can live with, and I am actually kind of amazed that I'm not freaking out: I'm going to try using a different strain, one called Mandarin Cookies, to make my oil instead of good ole Chemdog. Mandarin Cookies is an indica-dominant phenotype said to be rich in linalool and mercene—terpenes thought to be helpful in suppressing seizures. Reviewers laud Mandarin Cookies for its potential to relax and uplift. I'm hoping it might be even better at controlling seizures than Chemdog was. If not, I may be able to go back to using Chemdog once the dispensary harvests it again.

Meanwhile, Calvin's seizure activity has calmed down these past two-and-a-half weeks, but his behavior has seemed to go downhill. He's been more agitated, loud, more restless, and seemingly more headachy. Calvin's behavior has caused me to rethink his Keppra dose, which was already very high before I increased it early last month to account for his recent weight gain and a bad spate of seizures. I fear I may have acted too hastily in increasing it.

So, I sat down at my computer to reacquaint myself with the drug. I was reminded that Keppra's therapeutic range for kids Calvin's age is between 40 and 60 mgs/kg; Calvin is taking 75 mgs/kg. I read that Keppra does not appear to yield much benefit over a certain dose. I am often reminded that most drug side effects are dose related, and that any antiepileptic drug, especially at high doses—including cannabis—can also trigger seizures in some people.

As I sit and listen to Calvin cough and shriek, watch him crook his arms and madly rub his fingertips together, see him clench his jaw, poke his eye, rub his forehead, hear him bang his head against his bed's side panel five or six times a night, I realize his behavior has worsened since increasing the Keppra. So I got his neurologist's buy-in (not that I need to) on reducing his dose in the coming weeks. I'd do it now, but I want a slightly larger window to determine if having cut Calvin's CBD yields meaningful and longer-term results, and I have to decide whether to initiate the new Mandarin Cookies THCA oil first.

And so you see why—between reducing Keppra, evaluating CBD and switching THCA strains—I did not know where to begin when starting this. Having laid it all out in words, perhaps I do now.

Making my THCA oil

good riddance

Good riddance to March and its six grand mals, its baker's dozen of complex partial seizures, its night terror-pain episode and its eighteen days of at least one kind of misery for my boy. Good riddance to dirty snow, icy sidewalks, frozen tundra and frequent sub-freezing temperatures.

A little over a week ago on the heels of a terrible spate of seizures, we reduced Calvin's CBD oil having seen no positive results from having increased it almost two weeks prior. We took it from 145 milligrams down to 60 per day—a dose he was on when he had half as many seizures as he did this month. I did not do a total reboot (taking it away for two days then starting back at its lowest effective dose) since Michael was out of town and I didn't want to do anything drastic while he was away. Since I reduced it, however, we have not seen any complex partial seizures, but it is still too soon to come to any conclusions about the lower dose's overall efficacy. Suffice to say we're hopeful, and if Calvin does have fewer complex partial seizures, it would be consistent with what we saw when he was taking a different brand of CBD oil over a year ago, which was that, at least at high doses, it seemed to trigger complex partial seizures.

So—once again—cross your fingers and knock on wood for our sweet little guinea pig, who endures the suffering seizures bring, and the side effects of the methods we use to thwart them. Hopefully one day we can say good riddance to them, too.

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.