4.24.2019

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.


4.20.2019

twilight mist

i stand outside in twilight mist. the grass is beginning to green and the earth is softening underfoot, save for a patch of ice in a slice of shade. buds are starting to plump. shoots are pushing up through the mulch.

inside, michael is making dinner and dessert for our guests. i can see him through the window in amber light, the baby monitor slung around his head. i can almost hear the stereo playing cibo matto's alternative japanese funk. soon, i'll feel the bass beat in my chest like an artificial heart.

upstairs, calvin is in bed having suffered four complex partial seizures today. he's not asleep. i'm standing under white pines and oaks; my son is likely not out of the woods.

when i come inside i smell the lemon blueberry almond-flour cake cooling on a wire rack. i drink a sip of french wine. it soothes my throat. i feel an itch to write. i have time. our guests are running late.

tonight, we'll light the candles. i'll head upstairs umpteen times to check on our kid. i won't catch up on last night's lost sleep. still, i'll go to bed grateful for my handsome husband, food on the table, music in my ears, a feast of good conversation with wicked smart and loving people, a warm house, a good dog and the sweetest boy in the world.

Photo by Michael Kolster (from a few years ago)

4.19.2019

college nostalgia, sweet spots, pity eclipses, etc.

For a couple of hours last evening I was taken back to my college days, to a sweet, off-campus house shared by five students, complete with a shabby, yellow, vintage sofa and rooms decked out with second-hand tables and chairs. Our host let me peruse the second floor where, at the top of a steep, carpeted, slightly askew staircase, I peered into the dimness of a few rooms, their beds and floors endearingly strewn with piles of clothes like so many college students are wont to do.

Back in the kitchen, I cracked open a bottle of Côtes du Rhône and filled four stemless wine glasses, two of them plastic. We toasted our hosts, Ben and Meghan, wishing them well in the final few weeks of their senior year. We got their takes on life in Michael's photography classes, plus updates on their current projects. They told us of their post-graduation plans and dreams, including moving to Boston, of having turned down lucrative job offers that didn't speak to their hearts, and of their desire to live near new and old friends. They explained the dating app they've been designing, how it works, and shared with us its clever name, logo and marketing campaign.

It felt good to be sitting around a table with such bright, curious and engaged youth, felt good to be in an apartment that looked, smelled and vibrated so much like the ones I shared with my college roommates thirty-five years ago. And though I was delighted to be in the company of these generous souls who perfectly seared a huge filet mignon and tossed a tasty organic green bean and tomato salad, I was keenly aware of the pinch and sting I felt knowing I'd never be doing such things with my own child. Thankfully, however, the joy of communing with these happy, energetic, optimistic individuals eclipsed any pity I might've felt for myself. I left hoping they'd keep in touch and visit us from time to time like a few other beloved former students—Arnd, Ivano, Emma—did and have done over the years.

Back at home with our fifteen-year-old son who can't speak, wears diapers, still drinks from a sippy-cup, plays with chew toys, and is prone to seize, we are celebrating his own triumphs: Calvin has suffered only one seizure this month, and it was not a grand mal. He has had only three grand mals in the past thirty days, plus just three complex partial ones. And though I shouldn't get ahead of myself, if April keeps trending this well, it could be his best month seizure-wise in four or five years, despite taking only one pharmaceutical. I'm owing this success to having significantly reduced his Palmetto Harmony CBD oil from about five milligrams per kilogram of his weight down to about two mgs/kg, a strategy for success (finding its sweet spot) that its maker and many other parents attest to.

And so today, in the happy afterglow of last night's gathering, and during a day in which my own boy is doing quite well, I'm hoping good things for the Bowdoin College seniors who are about to inherit—and no doubt change for the better and for the common good—our crazy, effed-up world.


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