put me in your pocket

like the satiny skin on the back of my hands, patience thins. so easily ruptured, like tissue, just with the faintest bit of pressure. after a tear, will it mend? will there remain a ghost of stress and frustration veiled over almost everything? like the close glove of humid air, it's suffocating. oppressive. i've felt and written this again and again. i wonder if things will ever change. or is there really no escaping?

my throat feels raw from screaming loud as i can. trying to drown out the maniac seated behind me to the right. hoping to release my tension. my son is a train wreck, today especially. he screeches and flails, moans and careens. he's out of his mind, and taking me along with him. he's hurtling toward a seizure. i can feel it. it sickens me. i give him an extra half dose of thca cannabis oil, hoping it will calm and fill the void—the one left by lowering his keppra again. we're hoping to get him off it like we did his other meds.

i'm pent up and seething. have loathesome feelings. i love him and i hate him, if only fleetingly. it's not his fault, i know. not anyone's, really. well, perhaps dr. Rx should take some blame. i'll gladly lay it on him. all those pills. drugs on top of drugs on top of drugs. benzos—for a toddler! no way to tell for sure which ones are hurting or helping. i try to trust my gut. mostly, it seems the drugs just inflame his fits and bad behaviors. but maybe it's just the seizures. i wonder how godawful he feels.

how long can a body and mind take this hell—his and mine, our family's? almost no time these days away from my messed-up kid. just short walks with the dog, evenings with michael and nights while asleep dreaming of people i love and who love me. even my writing is punctuated by my son's moaning, stomping and madness. he's a mini frankenstein. a jekyll and hyde kid. at times, i'm repulsed. i have to forgive him. forgive myself. we're all monsters once in awhile.

on days like these, driving along my beloved back roads offers no escape. i'm tethered to my little freak. and when i'm home, i can hardly do anything for all his insanity. it's insufferable. so, in fits and starts, i surf social media. live vicariously through other's photos—weathered docks and lakeside cottages, galapagos rocks and iguanas, western sunsets, cocktails, pasta, and crisp white tablecloths on city sidewalks. the images save me. give me a window of respite from shitty days like these.

put me in your pocket, please. from there, i can better imagine escaping. can view what lies beyond these walls. can see all that we are missing.

On one such day, photo by Michael Kolster

wonder

my little wonder brings me up and brings me down. he makes me smile. he makes me frown. he's the sweetest kid in the world. he's cute and handsome, incredibly peculiar and so messed up. sometimes he's unbearable. always, he makes me think and feel deeply. i wonder what emotions he's capable of feeling.

i wish i could get inside his head. he's impossible to figure out. i wonder what he dreams, wishes, needs, wants. i wonder what, if anything, he worries about. does he know he's treasured, resented, loved? does he have those feelings about us?

what does he experience when a seizure is coming? pain? panic? fear? euphoria? this morning he had his third grand mal in just thirty-one hours. in our grogginess, we decided to give him the rectal valium to stop the cluster. so difficult to know what is best when it comes to these drugs. what's too little? what's too much? have the drugs actually caused this clusterfuck? what if we had never given them to him at the start? would he still be seizing after all these years? have the drugs ruined our son? these are things i so often wonder about.

today will be spent parked on the faded green couch. my boy is mostly out of it—listless, unsteady, feeble. he's silent, calm, needy. my neck is aching. he keeps craning his toward the sun. i sense he's not yet out of the woods. more seizures coming. i can feel it in my bones. no wonder i so often come undone.

perhaps today i'll get some rest. maybe read a little. write some. stay out of the heat. cuddle my son. try to move beyond the worries that keep me up at night—regret, failure, lost opportunity, despair, dread. i'll keep wondering what goes on inside my little boy's head.

unforgiving

It had been only three days since my son's last grand mal seizure. As Calvin convulsed, at first tangled in his covers, Michael and I caressed his arms and legs, kissed his face and told him that we love him. It was the first time in awhile that I cried after one of his seizures. Perhaps my tears were triggered by a state of physical and emotional exhaustion from months of taking care of a child who can do absolutely nothing by himself save play with his baby toys in a bed with side panels and a netted canopy. This pandemic has made everything about life harder. On top of that, Calvin's epilepsy has been unforgiving as ever.

When the seizure was over, Michael went downstairs to finish preparing dinner. I sat on a step stool next to Calvin's bed and kept vigil, watching and feeling my boy's chest rise and fall. In the dim room, as I mourned my son's condition, I wondered again how I'd keep it up, this caring for him as he grows into a young man. I don't really know the answer. In the quiet, I recalled how, earlier that day, I had seen little kids riding bikes with their friends, siblings and parents. Last week I'd seen a child half Calvin's age swimming in the brackish water off of Simpson's Point with his mother, the two of them chasing schools of hungry fish churning the water. I'd seen a little girl skipping down the street with her dog. I'd seen a young family buzzing around in a small community garden, perhaps picking raspberries, beans or tomatoes. My child has nothing to do with any of it. His body grows but most everything else about him stays the same. Though sixteen, he's still an infant-toddler. He still wears diapers, which in the hot, humid weather make him sweat. His go-to toys are still rattles and chewies. He still seizes. About the only things that are different are the soft, thin mustache that has appeared and is gradually darkening, and the thought that he is becoming permanently psychotic due to years of seizures and antiepileptic drugs.

As evening fell and the room around me darkened, my thoughts turned to the young man I just started writing to who is living the rest of his life on death row. Online, I've seen photos of the cramped, rusty, neglected cells in his so-called correctional facility. I wonder if he can ever see trees, stars, the moon, or hear wild things bark at night like I do. I wonder what he dreams about while I dream of things like my mom and dad, San Francisco, missing flights, breathing underwater, Calvin seizing. I wonder if this captive soul can remember what the world looks like outside the massive prison walls. Does he ever catch the scent of sweet clover? Hear the buzz of bees and the chirps of birds? Does he remember or see bodies of water slip under low bridges? Does he imagine gleeful children so unlike my son leap from their spans on these unforgiving days of summer?

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.

riding it out

My eyes are aching in their sockets, this morning being the fifth in a row that Calvin has woken up ungodly early to one or more focal seizures. On Wednesday night, he also suffered a grand mal, so it has not been a good month at all. Did I make a mistake in reducing his nighttime THCA cannabis oil, thinking that the THC in it might be causing his evening grand mal seizures and agitation? Does he need more CBD? Both oils have helped him in the past. Question is, what are their sweet spots? Is less better, or more?

However, since I've made a few changes to his regimen already this month, and since it appears he's been going through a growth spurt, I'm going to try my best to ride out this spate of seizures without changing anything else. I'm going to remember that Calvin is taking WAY less drug than in the past—his only pharmaceutical anticonvulsant is Keppra, which is at its lowest dose in years. His CBD is close to its lowest dose and his THCA is still about half of what he's been on in recent past. My gut tells me to raise it again, so I might do that, but not until after this recent storm calms.

Despite the uptick in seizures, I am still amazed and grateful that Calvin isn't doing worse than he is. Always a tiny child, and having made it onto the growth charts only a few times in his entire life, albeit never past the first percentile, he has grown nearly two inches since April; the top of his head now reaches my chin! My gut tells me puberty and growth, especially spurts like these, could negatively affect his seizure threshold.

So I'll keep riding this thing out, grateful that Calvin is having calm, happy days, though lethargic ones, and I'll hope for better, more seizure-free days to come.

Calvin, still looking like a newborn when he was nine months old.

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.

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

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

sweet spots (cbd and others)

For awhile, I've wondered why the all-time most-read post on my blog is one called day five hundred. To my surprise, folks continue to find it amid the 1,843 posts I've published since starting my blog over eight years ago. In pondering the question, I reread the post and came to the conclusion that readers, perhaps mislead by its title, were and are interested in knowing how my son, Calvin, went five-hundred days without a seizure. In actuality, when I wrote the post Calvin had been free only from conscious-onset daytime grand mals. In other words, he was not seizure-free because he was still having them at night.

In revisiting the two-year-old post, I thought it prudent to give readers an update. Calvin continues to be virtually free from daytime grand mal seizures. I say "virtually," because in November, he had some sort of event at school which the ed techs were unsure of. When asked, they described attributes of both grand mal and partial complex seizures, thus confounding me. Suffice to say, nearly all Calvin's grand mal seizures emerge at night, most often in the wee hours of sleep.

Of note now is the fact that Calvin is having the same or fewer seizures as compared with recent years despite, a) being in the thralls of puberty, b) having finally weaned the benzodiazepine (Onfi, aka clobazam) he was on for years, c) taking less Keppra, and d) taking half the amount of my homemade THCA cannabis oil that I began giving him five years ago. What's different is the addition of Palmetto Harmony CBD oil I began giving him last June. At sixty pounds, Calvin's daily intake of the oil is 75 milligrams roughly divided into two doses. At this dose we have not seen any negative side effects attributable to CBD. In fact, he is sleeping a bit better, seems less agitated, is having far fewer partial complex seizures and very slightly fewer grand mals. Of late, his days between seizures have been mostly calm and filled with smiles and moments sitting on our laps sopping up hugs and kisses. When I've given him extra CBD in the wake of partial seizures, he hasn't gone on to have more, so I can be fairly sure the Palmetto Harmony CBD oil is not a seizure trigger for him.

Compared with other children his weight, Calvin may be taking more CBD, but he has a history of requiring high doses of medications to achieve any semblance of efficacy. I keep in my mind—and heart—Charlotte Figi, who is Calvin's size and whose mother Paige told me takes nearly three times the amount of CBD Calvin is currently taking. I also consider the children who are taking way more CBD—as much as 1,300 mgs per day—in the form of the new plant-based pharmaceutical, Epidiolex.

My hope for the new year is that we will find a CBD sweet spot which limits or eliminates Calvin's seizures without any adverse side effects—in essence, I hope we find a silver CBD bullet in this golden potion. If we do, I'd love to try reducing Calvin's THCA and Keppra.

In-between seizure days, I am finding time to get out of the house to enjoy my own sweet spots—rivers, beaches, forests, seas—which keep me healthy and mostly sane. I've been afforded such luxury because, after a three-month hiatus, Calvin's kick-ass nurse, Rita, recently came back to work for us via a better and more ethical agency than the one she left. Rita job-shares her part-time gig with a second nurse, Sue, who is exhibiting similar kick-ass characteristics. In addition, we have Mary, Calvin's former ed tech, who also provides us respite, and who has been kicking major ass for years as Calvin's aide. All three women are a joy to have in the sweet spot we call home.

So, in 2019, I'll continue my search for sweet spots, and I'll let you know if and when I unearth them.

weight of the world

October has been, in great part, kind of miserable for me and my son—grand mals mark up my calendar dates in orange highlighter; too many blue squares represent partial ones. My son has seized on nearly half of this October's days. He hasn't had a month this bad since January.

Again, I ask myself all of the pertinent whys. Again, I spend long, monotonous days nursing a sick kid. Again, I grieve the loss of a healthy, typical child. Still, I am grateful for our privilege and fortune, for our nation, our home, Michael's job, our food, our drink, our relative health.

Outside these four walls the world seizes. A journalist is brutally murdered in his nation's embassy abroad. Innocents are starving to death in Yemen from a famine aggravated by Saudi attacks using weapons we supply. Central American refugees are fleeing poverty, rape and homicide in search of a better life. Homemade bombs are sent to prominent democrats—People of Color, vilified women, and former presidents. Two African Americans were shot while trying to shop at a grocery store. Jewish friends are once again made into scapegoats. Tree of Life synagogue was shot up by an anti-Semite. Eleven people dead. The list of innocent men, women and children maligned and murdered for the color of their skin or their religion continues to rise. Some conservative White Christians sit back and bristle at the thought of their political leaders and pundits being confronted and harassed at restaurants, while never seeming to flinch at the oppression, abuse and murder of marginalized Americans by domestic right-wing terrorists and White supremacists.

The anti-Semitic shooter gunned down two intellectually disabled brothers—the innocent of innocents, the purest of the pure—reminding me of the first victims of the Holocaust who were people like my son Calvin: the intellectually disabled, the infirm. I hear too many Americans grouse about athletes kneeling during the so-called national anthem. I see too many efforts to suppress the votes of minorities. I watch videos of White women calling the police on Black Americans who are minding their own business mowing lawns, swimming, barbecuing, shopping, entering their own goddamn homes. It angers me, this continued harassment, abuse and disenfranchisement of my fellow Americans who work their asses off, pay their taxes, live good lives. They're far better men and women than many of these politicians are.

Sometimes I wonder if Calvin's seizures are—like the gravity of a full moon—triggered by the weight of the world. I wonder if they'll ever stop, or if they'll keep marching right through. With his and others' suffering in mind, I scour the internet for images of Yemen. I find the photo below. I think to myself what we all should be thinking—this could be my child.

Photo by Abduljabbar Zeyad/Reuters

stunted by drugs

On Calvin's first day of eighth grade, his new teacher asked me what short-term and long-term goals I have for Calvin. I rattled off a list from the top of my head:

learn to eat with a spoon (he had begun to when he was two). be (somewhat) potty trained. learn to nod his head for "no" and make a sound and/or pat his thigh for "yes." stand and wait (something Calvin had nearly mastered when his ed tech Mary was his main aide.) sit and watch a video. walk with his arms down at his sides instead of circling them around above his head and in front of his face. stop putting his fingers in his and other people's mouths.

With what I believe were good intentions, his teacher underscored how much kids like Calvin, once they are old enough, can benefit from working a job. I explained to him how, for eight years, I have helped Calvin practice—almost daily—pushing the doorbell at our neighbor Woody's house. The button itself is textured and ivory, its mount is black; it's easy to see. In nearly a decade, Calvin has been able to manage the task little more than a dozen times without my help, most of those times in the past year.

"Calvin is not going to be able to hold a job," I told his teacher, trying to conceal my despair at the notion. I realized then, with the greatest clarity, that the boy we have now is the boy he was twelve years ago and the boy he will likely always be—one whose development, hindered by the lack of white matter in his brain, was further stunted with the advent of seizures and the initiation of anti epileptic drugs at the age of two.

This morning I came across a video I'd posted on You Tube years ago. A kind stranger had commented, "He is adorable." The video, taken in 2010 just before Calvin's sixth birthday and which is in ways excruciating, shows him getting into a stand from a crawling position. Partway through, I mention how he is, "almost as good as he was two years ago," when he was not quite four years old. I also mention his fatigue from having just taken his morning dose of benzodiazepine, clobazam, which years later we spent four years weaning, eventually coming off of it last February.

For some people, epilepsy drugs have a way of stealing one's life. The loss of hard-earned skills as the result of mind-numbing drugs is painful. The list of failed pharmaceutical medications is endless. The heinous side effects from drugs that don't completely control—and sometimes exacerbate—seizures is harrowing. We end up with children we don't recognize and aren't sure we can ever know, with children who might have turned out completely different if not for the relentless brain- and body-pummeling of seizures and drugs.

Having said that, our son is no less adorable or affectionate. It comes as some solace that Calvin doesn't know what he is missing in the world. I cannot imagine he wants for anything but car rides (he didn't used to) and hugs and kisses, breakfast sausage and blueberries, spinning in his jumper and banging the shutters, biting plastic and wood and cloth, getting tickles from me and his dad, and walking down the sidewalk to ring Woody's doorbell, only to sit in Woody's kitchen rocker briefly enough to eat a piece of chocolate before getting up to leave.

             

personal best

Late last week, Calvin matched one of his personal bests having not had any grand mal seizures in a month's time after having suffered six to eight per month since April. The longest Calvin has gone between seizures is seventy-eight days. That was five years ago when he was taking high doses of three powerful antiepileptic drugs—Keppra, Onfi and Banzel—before I began giving him a homemade THCA cannabis oil, and before starting a four-year wean from Onfi. On the downside, this month he has had ever slightly more partial complex seizures than of late, but—only a handful—they have been mild and brief.

Nowadays, Calvin is taking a fairly high dose of Keppra, but we have not increased it in two years or so. Moreover, his daily dose of THCA cannabis oil hasn't increased for years. In late June he began a low dose of a new CBD cannabis oil called Palmetto Harmony, to which I attribute the virtual disappearance of Calvin's grand mal seizures.

For the most part, since initiating the Palmetto Harmony, Calvin has been sleeping better and, besides a few brief manic episodes on most days, our boy seems happy, is smiling and giggling and hugging. His improved behavior and compliancy means it has been easier to take him places; he willingly walks farther and has gotten slightly better at sitting still. My guess is this improvement is also due to the CBD oil and/or the reduction in his seizure activity.

For those of you wondering why CBD seems to be helping Calvin now when it hadn't seemed to help during the years he was on a couple of different ones, I think it may come down to the way Palmetto Harmony is made; it is infused directly into the oil rather than being extracted using ethanol or CO2 methods. In this way, the oil captures the broadest, deepest spectrum of cannabinoids and terpenes from the cannabis strains its makers use. In other words, nothing is lost.

So, we've entered Calvin's second month with zero grand mals on the books. It is an amazing feeling of liberation, and I have hope that we can make the partial seizures go away.

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.

piece of cake and other idioms

This morning, I narrowly escaped a bruised or broken nose, a black eye and a fat lip. After Calvin's second grand mal in less than twelve hours he began acting as if he were going to launch into one of his frightening night terror episodes. These events are difficult to diagnose; I don't know if they are migraines or withdrawals or panic attacks or hallucinations or some kind of seizure. Perhaps they are a combination of all of the above. Thankfully, the acetaminophen suppository seemed to help, but not before he roughed me up and head butted me several times.

Last night was the second time this month Calvin suffered a grand mal only an hour after his bedtime meds and after falling asleep—a rare time for him to have a fit, though not unheard of—and the second time he had seizures on consecutive days totaling five grand mals already this month. I'm cautiously optimistic, however, about what it might mean that we have not seen any partial complex seizures in over four weeks. If we can virtually eliminate these, Calvin will, in any given month, have less than half the number of his average of monthly seizures. Still, the grand mals possess him, and I feel we are running out of viable, reasonable options for their suppression.

Often, I tell folks that if it weren't for Calvin's epilepsy—the dread, the scores of seizures, their side effects and dangers, the drugs he has to take which I have to order, dispense and give, their side effects, the cannabis oil I make, dose and administer, the sleepless nights due to seizures and drug side effects, the cumulative toll from stress—taking care of him would be a piece of cake. Seriously, without epilepsy, Calvin's non-verbal, incontinent, legally blind, uncoordinated fourteen-year-old self would be, in comparison, incredibly easy for me, a veritable walk in the park. Without epilepsy and its drug treatments, Calvin would likely walk better and be worlds ahead developmentally. Hell, he might even be uttering words and stringing some of them together. He'd likely sleep far better and not suffer bouts of mania, withdrawal, panic or the night terror thingies. I wager his bowels would work without having to "supp" him every day. Maybe he'd even be potty trained. A kid like that I could no doubt take care of blindfolded with one hand tied behind my back. No joke. If that kind of kid—the one I just described—sounds like a lot to handle, then perhaps you get some sense of how debilitating, limiting, harrowing, stressful and exhausting epilepsy can be for a child and their family.

So, today, while it is gorgeous and mild outside, I am walking around the house like a zombie. I am not on a cake walk. Right now Calvin is in his bed with a case of the hiccups. He's got a low-grade fever, doesn't want to eat or drink, is quite agitated and has several other harbingers of another seizure on the horizon. In other words, I am not convinced he is out of the woods yet. But still no sign of the partial seizures which usually appear in the wake of grand mals. That is good.

What is also good is that I don't have a black eye, a fat lip or broken nose ... yet. But I wish today with all my might that Calvin and I were taking a walk in the park.

Photo by Michael Kolster

the view from here

The past month has led me to be cautiously optimistic about what I've been hoping would happen the further Calvin gets from his last dose of benzodiazepine, and therefore from its withdrawal side effects: that, even though he's in the throws of puberty, he'll suffer fewer seizures as a result.

In the past thirty-three days, Calvin has had only three partial complex seizures. Usually, he has a handful to a dozen, sometimes more. As far as grand mals go, in the past four weeks he has had only four, which is very slightly less than his average four years ago when we began weaning his benzodiazepine from his all-time high dose of 35 milligrams per day. Nearly four years later, February 24th, 2018, he took his last dose. If Calvin can make it another two or thee days without any more seizures, it will be the fewest seizures he'll have had in a one-month span in over a year and a half, and on way less pharmaceutical medication.

I should mention that while I don't believe in jinxing things, I've experienced enough of what I'd call "good stretches," only to be devastated by a day or string of days when Calvin suffers multiple grand mals and/or partial complex seizures. As epilepsy rolls, it isn't beyond the realm of possibility that March, which came in like a lamb seizure-wise, could go out like a lion and be be one of his worst months on record.

But the view from here is looking pretty damn good. Cross fingers. Knock on wood.

everything you wanted to know about benzodiazepines but were afraid to ask

. . . and, or, your or your child's doctor didn't tell you or know about in the first place.

Below are some outtakes from the Ashton Manual, a critical guide—a bible, really—for current and potential benzo users to peruse, study, familiarize and perhaps memorize.

Calvin is in his fourth year of weaning his second benzodiazepine. He is down to less than one milligram per day from a high of thirty-five—an enormous dose for a pint-sized child. The first benzo, clonazepam, was prescribed when he was just three years old. Had I known then what I know now, I would have flatly refused his neurologist's suggestion to put Calvin on it, particularly while simultaneously starting him on two other drugs. Alas, as neurologists seem to do, the doctor downplayed its side effects, neglected to inform me of the body's tendency for rapid habituation to it, and assured me it was meant as a bridge drug to be used for only a few weeks. It took another benzo, clobazam, to safely come off of it two years later. Calvin has been on clobazam for the good part of a decade. Again, had I known then what I know now. Sigh.

Paradoxical Stimulant Effects
Benzodiazepines occasionally cause paradoxical excitement with increased anxiety, insomnia, nightmares, hypnogogic hallucinations at sleep onset, irritability, hyperactive or aggressive behaviour, and exacerbation of seizures in epileptics. Increased aggression, hostility, and impulsivity occur in some subjects and may result in attacks of rage and violent behavior. 

Less dramatic increases in irritability and argumentativeness are much more common and often remarked on both by patients on long-term benzodiazepines and by their families.

Impairment of Memory
Benzodiazepines have long been known to induce anterograde amnesia. 

Tolerance
Tolerance can develop to all the actions of benzodiazepines, although at variable rates and to different degrees. Tolerance to hypnotic effects develops rapidly: sleep latency, stage 2 sleep, slow wave sleep, dreaming, and intrasleep awakenings all tend to return to pretreatment levels after a few weeks of regular hypnotic use.

Tolerance to anxiolytic effects seems to develop more slowly, but there is little evidence that benzodiazepines retain their effectiveness after 4 months of regular treatment, and clinical observations suggest that long-term benzodiazepine use over the years does little to control, and may even aggravate, anxiety states.

Structural Brain Damage
The question of whether prolonged benzodiazepine use can cause structural brain damage remains unanswered. It remains possible that subtle, perhaps reversible, structural changes may underlie the neuropsychological impairments shown in long-term benzodiazepine users.

Withdrawal Symptoms
Abrupt withdrawal from high doses can cause a severe reaction, including convulsions and psychotic episodes. Withdrawal symptoms from therapeutic doses are mainly those of anxiety, both psychological and somatic, but certain symptoms such as sensory hypersensitivity and perceptual distortion may be especially prominent, and depression may sometimes be a prominent feature.

Long-term benzodiazepine use is associated with more severe adverse effects, including memory impairment, depression, tolerance, and dependence.

Mechanisms of Withdrawal Reactions
Drug withdrawal reactions in general tend to consist of a mirror image of the drugs' initial effects. In the case of benzodiazepines, sudden cessation after chronic use may result in dreamless sleep being replaced by insomnia and nightmares; muscle relaxation by increased tension and muscle spasms; tranquillity by anxiety and panic; anticonvulsant effects by epileptic seizures. These reactions are caused by the abrupt exposure of adaptations that have occurred in the nervous system in response to the chronic presence of the drug. Rapid removal of the drug opens the floodgates, resulting in rebound overactivity of all the systems which have been damped down by the benzodiazepine and are now no longer opposed. Nearly all the excitatory mechanisms in the nervous system go into overdrive and, until new adaptations to the drug-free state develop, the brain and peripheral nervous system are in a hyperexcitable state, and extremely vulnerable to stress.

Psychological Symptoms of Withdrawal
Excitability (jumpiness, restlessness), insomnia, nightmares, other sleep disturbances, increased anxiety, panic attack, agoraphobia, social phobia, perceptual distortions, depersonalization, derealization, hallucinations, misperceptions, depression, obsessions, paranoid thoughts, rage, aggression, irritability, poor memory and concentration, intrusive memories, craving.

Physical Symptoms of Withdrawal
Headache, pain/stiffness (limbs, back, neck, teeth, jaw), tingling, numbness, altered sensation (limbs, face, trunk), weakness ("jelly-legs"), fatigue, influenza-like symptoms, muscle twitches, jerks, tics, "electric shocks," tremor, dizziness, light-headedness, poor balance, blurred/double vision, sore or dry eyes, tinnitus, hypersensitivity (light, sound, touch, taste, smell), gastrointestinal symptoms (nausea, vomiting, diarrhea,,constipation, pain, distension, difficulty swallowing), appetite/weight change, dry mouth, metallic taste, unusual smell, flushing/sweating/palpitations, overbreathing, urinary difficulties/menstrual difficulties, skin rashes, itching, seizures.

Photo by Michael Kolster

rough patch

"I've been reading your blog," friends and acquaintances often say when they run into me in town or at the fields, "Sounds like Calvin has been going through a rough patch."

Images of a bird snared in a brier patch or stranded in some parched bit of desert come to mind. No doubt they're right, yet I hesitate to mention that this rough patch Calvin has been experiencing has lasted thirteen-and-a-half years with little relief. In fact, smooth stretches in Calvin's life have mostly been the exception rather than the rule.

To be honest, however, the past six months apart from May have been somewhat harder on Calvin, what with interrupted sleep and increased seizures, which could be due to benzodiazepine withdrawal, puberty, and/or B6 toxicity and its abrupt elimination. But he's gone through spates like these before, at times needing emergency hospitalization for prolonged seizures, the worst of which lasted the good part of an hour.

In my quest to remember what my child was like before the seizures and mind-numbing drugs, I look back at pictures of him as a baby and I see what appears to be a happy boy. Michael reminds me that photographs often tell lies. Yet, I swear Calvin wasn't always so spastic, so manic, such an hyperactive, peculiar child.

I'm reminded of the Frontline episode, The Medicated Child, and the boy in it who suffers quirks and tics from years being on powerful medications meant to focus and calm him. I wonder what so many antiepileptic medications have done to Calvin's developing brain, to his behavior, his gait, his coordination, his sleep, his ability to be calm. I really have zero doubt that Calvin is the way he is not because of the seizures, but because of the side effects of the drugs. I wonder if after his last dose of benzodiazepine—which I hope might be before his birthday next February—he'll be able to eventually revert back to the child in those lovely photographs and videos of him smiling and serene; in a few of them he looks almost normal. Something tells me he's been wrecked for good.

Alas, this rough patch doesn't appear to be ending anytime soon. And so all I can do is my best to make it smooth as possible for my kid and for my family and—in-between my own bouts of madness—do what I can to ease this bumpy ride, keeping my sights on a soft landing, like a water bird on a pond.

Photo by Michael Kolster

in the woods

I had a good cry the other morning, better than I've had in a long time, perhaps too long. It felt like olden days, back when Calvin was an infant and I was just beginning to understand how messed up he was likely going to be, back when his developmental gap was widening by the minute, back when I'd cry in the woods on most days.

Hot tears rained down my face, kissed by the cool damp of the surrounding forest. I let them flow. I was alone, my face a grimacing, dripping mask, my breathing more like gasps. Nellie waited for me on a knoll in the shade where I sat myself on a root. She licked the tears from my face. I lingered there with Nellie, the birds and trees, and I let my tears dry in the wind.

On the stretch home I lamented Calvin's inability to do most anything without at least some assistance, and most things not at all. He can't independently walk, talk, trike, eat, drink, pee, shit, bathe, dress, undress, run, play, climb, sing, dance, brush his teeth, comb his hair, play with toys appropriately, cover himself up at night or get out of bed. I grieve the loss of what I thought parenthood had promised—seeing my child engage with peers, talking with him about the ways of the world and about what it means to be a good person, going with him to the movies or out to dinner or on a hike or to a concert or go fishing or swimming or biking or shopping or walking in the woods.

Some of my pain rained out when I wept, and more so during a brief visit with my neighbor and dear friend, Woody. In his eighty-five years he has experienced his share of grief and loss, and he held me as I shed a few more tears.

"It'll get better," he said. Then, as if he knew my stance on these matters, he corrected himself by adding, "it might not get better, but everything will be okay."

My day improved after a visit from a friend and a successful trip to the grocer, the gelato place and the health food store with Calvin. But my boy soon wilted, becoming pale and spacey, omens of worse things to come.

That night, after dining out with my homie Sarah, whose boy Jacob is quite like mine, Calvin had two grand mal seizures in the span of five hours. After the second one, at two-thirty in the morning, he writhed in agony for hours. Acetaminophen and acupressure did nothing to assuage his suffering, which I think may have been a mix of migraine and gastrointestinal pain. The event was identical to bouts he'd endured when we first began weaning his benzodiazepine over three years ago. I wondered if it was due to the abrupt withdrawal of vitamin B6, wondered if I'd given him too much THC, wondered if it was the benzo withdrawal, even though we paused it over a month ago. In my inability to do anything else to help, and short of the loathsome idea of taking him to the hospital, I kept telling him soon he'd feel better; experience told me so. Finally, at dawn, just as the birds began singing in the woods, Calvin settled and went to sleep for an hour.

Today I read on social media that coming off of vitamin B6 can look a lot like benzodiazepine withdrawal. Indeed, its sudden elimination may have caused Calvin's cannabis and/or his benzo blood levels to abruptly plummet, causing a kind of withdrawal all its own. I also understood that Calvin's frequent tachycardia may be due to vitamin B6 toxicity and/or the THC rescue med I used twice that night. Next seizure—and there will be one—I'm going to try using only frankincense to stop it and prevent more. I'm also going to extend the pause of his benzodiazepine wean, holding at 1.5 milligrams per day for now because he's had eight grand mal seizures in the past thirty days, which is nearly double his monthly average. My hope is that once his B6 levels off the fits will calm down, and though I doubt they'll get markedly better anytime soon, perhaps everything will be okay, and maybe some day he'll step into the woods with me.

Photo by Michael Kolster