4.15.2019

so far so good

He looked like hell when I got him off of the bus last Thursday. Calvin's cheeks were purplish and blotchy, and he was trembling. Earlier, the school nurse had called saying he had strangely mottled thighs, something I've sometimes noticed on days before seizures. Once inside the house, I looked over the daily summary sheet that was sent home with him. It indicated that he'd also been whiny and shivering, though the nurse hadn't taken his temperature. I wish I had known. When I changed his diaper I noted his mottled skin, which was as purplish and as conspicuous as I'd ever seen, the marbled pattern spreading across his torso as well as his thighs. Though he had goosebumps on his legs, he felt warm, so I took his temperature. The thermometer read 102.2 degrees.

Poor Calvin continued to tremble, so I gathered him in my arms and carried him upstairs, where I gave him a tylenol, peeled off a few layers of his clothing and put him to bed. Thankfully, his fever broke later that night.

Unremarkably, all weekend long he spent resting, in and out of bed, in and out of our arms. Quite remarkably, he didn't have any seizures. Typically, viruses lower Calvin's seizure threshold, particularly at the start of an illness, often before symptoms appear.

Remarkable, too, is that since reducing Calvin's Palmetto Harmony CBD oil three weeks ago after a terrible, months-long spate of seizures, Calvin has had only two grand mals and one complex partial seizure. It appears that the CBD reduction—from 145 mgs to 60 mgs—did what many parents have attested to: it seems to have helped reduce his seizures, particularly his complex partial ones, to levels as low as just about any time in the past four years—just eight total seizures in a months' time, four of each. Though it is still a very small time-window to look through, I'd say, so far so good with the CBD strategy.

And though I've been toying with the idea of reducing Calvin's high dose of Keppra to see if his behavior and complex partial seizures improve, or further reducing his CBD oil to see if all of Calvin's seizures decrease when taking a lower dose, I am going to, instead, keep things status quo. I came to this conclusion after considering that, in a few weeks, I am going to have to replace Calvin's homemade THCA oil with one made from an entirely new strain of cannabis, thus introducing a new variable; I try to limit variables to one at a time.

For now, so far so good. Nevertheless, please cross your fingers and knock on wood.

Photo by Michael Kolster

4.09.2019

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

4.04.2019

alive and loved

It had been years since I dined with the neighbor-mother of a boy whose due date was within a week or so of Calvin's. However, Calvin, now fifteen, came into the world six weeks early, and from then on the trajectory of our sons' lives would forever be diametrically opposed.

Kathy and I sat in a corner table near the bar sipping beet yuzu martinis and wielding chopsticks to munch a shaved-cabbage, pea shoot, crispy-shallot, and roasted-peanut Asian slaw. My friend ordered pan-fried vegetarian dumplings. I got the ones with pork. We caught up a bit on our and our husbands' recent endeavors and shared worries about our children. We laughed and chatted with a friend seated next to us whose daughter, also fifteen, is in the wonderful thralls of what it means to be a teenager, just like my dinner-date's son.

I find myself hungry for stories of other people's kids even though they often trigger a bittersweet sting. My love for kids—their silliness and wit, their quirkiness and crazy antics, their world curiosity, fearlessness and old-soulness—is largely unquenched because mine is nonverbal and incapable of learning and doing so many of the most basic things. My child is just becoming proficient at riding a trike on smooth, indoor floors, while his peers are playing soccer and lacrosse outdoors. My child is still being spoon-fed diced, minced and pureed foods, while his peers can make their own snack foods. My child is relating mostly with adults—teachers, ed techs, nurses, while his peers are hanging out together and are beginning to show interest in having sweethearts. My child is still playing with chew toys, while his peers are likely already beginning to think about college.

Kristi, the woman seated next to us who I don't know very well, told me that she reads every one of my blog posts. She (needlessly) apologized for having not responded to any of them in written form. She wanted me to know how important she thinks my blog is for others. She went on to say that she even shares it with her children, encouraging them to think outside of themselves and into of the lives of others. I was most humbled by, and grateful for, her affectionate show of appreciation for what has become for me such a labor of love.

While Kathy and I drank and dined, a handful of Bowdoin College English professors filed in slowly and were seated at a nearby table. Three of them—Ann, Marilyn and Aaron—who are dear to me and whom I don't see nearly often enough, came over to visit briefly and to give me big hugs. Throughout my years of living in Maine, they've all been a source of strength, love and damn good humor.

When our drinks were empty and our bellies were full, we got the bill and Kathy kindly paid for our meal. Upon leaving, I gave each of my friends one more hug. As we left the cozy indoors, we were greeted by a cool and invigorating April breeze. I remembered what I'd said to Kristi before we were served our meal: March, which was so full of seizures, had been hellish for Calvin and me. But last night, having begun a new spring month, I left the restaurant feeling new and alive, loved and buttressed by so many kind, compassionate, generous, and wicked-smart people, many of whom are still kids at heart. No wonder I like them so much.

Asian slaw

3.31.2019

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.

3.28.2019

primal scream

Last night at around eleven-thirty I let out a primal scream. I couldn't help myself, having gotten up every half hour or less since nine o'clock—each time within minutes of falling back to sleep—to resettle my son in his bed and cover him back up. My shriek began as a question: What is wrong (with you, Calvin)?! It ended in an animalistic howl so loud I felt it must have woken the neighbors and shaken the house. Thankfully, both Nellie our wackadoodle and my child seemed totally unfazed. I crawled back into bed with a slightly hoarse and irritated throat, and deep feelings of remorse for my behavior.

Chronic sleep deprivation is torture. It can make me impatient and ugly. My son's all-too frequent awakenings (which, by the way, are far fewer since starting him on a newish CBD oil) sometimes lead to insomnia. Despite being exhausted, I can lie awake for hours worrying about silly things like unfinished chores and calls that need to be made. Often, I fret over the miserable state of things—my son's medicines and seizures, our earth's man-made ills, this administration's vile and pathetic behavior, the ongoing and oppressive patriarchy, the greed of oligarchs, the contempt for the poor, the apparent surge of racism, misogyny and bigotry in the world. Eventually, I get my mind to calm down by imagining forests and oceans, and by counting backwards from one hundred.

This morning, while hugging Calvin in my lap, I apologized to him. I'm fairly certain he doesn't know the meaning of forgiveness, and yet I've no doubt he is forgiving. I recognize my various stresses and limitations in taking care of my infant-toddler-teen these past fifteen years, especially during Michael's absences, and so I try to forgive myself. Thankfully, my husband is coming home tonight after a two-week stint in Europe having taken photographs for a future book of Paris parks, and been on press for his second publication, LA River.

While on a walk with Nellie this morning, I recounted last night's primal scream, and last year's documentary, RBG, which I had watched before I'd gone to bed. In it, badass Chief Justice Ruth Bader Ginsberg quotes Sarah Grimke (1792 - 1893) the American abolitionist, writer, attorney, judge and suffragette:

I ask no favors for my sex. All I ask of our brethren is, that they will take their feet from off our necks.

Recounting the quote made me wonder if my primal scream was more than mere sleep deprivation exacerbated by personal frustration over my son, but rather somehow collective. I imagined other mothers, wives, sisters and daughters shouting various objections about their burdens, their neglect, their abuse, their oppression. Perhaps, as Mary Oliver says in her exquisite poem, Wild Geese, they are out there wildly announcing their "place in the family of things." I don't know the answer, but I feel it when I talk with my beloved soul sisters.

Tonight, I'll be celebrating Michael's return. Tomorrow, he'll be back to cooking us fabulous dinners. As soon as the snow melts we'll be back to grilling outdoors and Calvin will again get to traipse circles around the yard touching his favorite mugo pine, rhododendrons and Alberta spruce. When the ground thaws, I'll be back to digging in the garden. With twilight coming later and later, I'll be staying up a bit longer, but I'll try to catch up on sleep when I can. I'll likely continue having meltdowns every now and then, but my husband, dog and child will, as always, listen without judgment, offer me love, support and forgiveness, and perhaps even understand my need to let out personal and collective primal screams into the world.

St. Cloud, Paris by Michael Kolster

3.25.2019

nature nurture

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

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

3.24.2019

march madness

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

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

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

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

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

Photo by Michael Kolster