8.16.2018

things i'm grateful for

tall phlox. shiny new toilet seats. the look and smell of mulch. monarch butterflies. pink. transgender women smiling at me. autistic girls signing to calvin that they love him. kitchen shops and their owners. small glass tumblers. neighbors. palmetto harmony cbd cannabis oil. five-plus weeks free of grand mal seizures. quiet drives down harpswell neck with an untroubled boy. roadside ice cream cone with iconic view. bourbon within reason. dry days. sleep. calvin finally able to sit by himself (sort of) at a picnic table. nellie. cicada buzz. cardinals. beaches. walking through the woods holding hands with calvin for the first time without bringing a stroller. chips, any kind. happy boy. smiling boy. homemade mint ice cream. rosewater. the blue of baptisia. cool showers on blazing hot days. freshly mowed lawn. strong arms. denim. linen. kick ass nurses. sudden downpours. birdbaths. geraniums. my husband. the kindness of strangers. the love of friends near and afar. family. maine. commercial-free music. vinyl. weathered cedar shingle. alberta spruce. rhodies and azaleas. rain. screen porch. twilight time. good books. breeze over naked body. bats.

8.12.2018

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.

8.08.2018

a better day

After two miserable days, Calvin is back to his best self—smiling, giggling, eating some, drinking, not apparently seizing.

Thanks to all of you who called and wrote, sending messages of love and support after reading my last blog post. It means the world. I'm doing fine. Thanks, also, to the accident of birth—of emerging from my mother's womb a fairly upbeat person just like her and her mom—to my dad for showing me the merits of hard work and of never giving up, and to competitive swimming for helping me discover further how capable and strong I can be—emotionally and physically—and the difficult challenges I can endure when it matters.

All these gifts, along with gardening, writing, my awesome husband, our dog Smellie, our friends, family, my precious son, even the kindness of strangers, keep me going in the midst of his relentless epilepsy.

I'm most grateful for it all.

8.07.2018

patience thins

Patience thins as my boy has more mild, short, insidious seizures—four yesterday and at least one this morning. One eye is red—mine; there is something in it I can't seem to get. Did I forget my child hit it? My fine hair has been ripped off and out by my boy's clammy grip.

It's oppressively hot and humid outside. Inside, the air is close. I sweat. Surfaces are sticky. My son is home from school again as I await his next fit. I hope the cannabis quells them into submission.

He pokes his eye and shrieks at times. He shakes his head back and forth crazily—drool flying—flailing his arms in a spastic frenzy. In my exasperation, I've a rare primal urge to slap him upside the head. I take a big breath instead. Earlier, I threw his shoe into the far corner of his bed. Pulled a muscle as I flung it. Felt no satisfaction as it punched the softness of his quilt. Pent-up yesterday, I mused on hurling opaline bowls into cement to mimic my heartshatter from the days' and weeks' and years' events.

Now my son swings and spins in his jumper. His jaw juts and clenches in the repulsive way that makes the "seizure dimple" I detest. His arms crimp, elbows up, claws inches from his face, fingers madly snapping. He's my son, but I don't recognize him, or perhaps I don't want to when he looks and acts like this.

It's not his fault, and yet.

8.06.2018

how to ruin a day

I said to Michael that Calvin's day yesterday was one of his best ever; he was calm and super happy, compliant and smiling all day. He ate, he drank, he pooped. He hugged us at every chance, held my hand in the car and giggled when we kissed and tickled him.

But epilepsy knows how to ruin a good day. So far today, Calvin has had four complex partial seizures. The extra THCA oil I gave him after the first one did not thwart the second. The Palmetto Harmony CBD oil I gave him after the second and third did not thwart the third and fourth, though I gave him tiny doses thinking—rightly—I might have to give him more. After the fourth one, I gave him another small dose of CBD cannabis oil, but that was only twenty minutes ago, so too soon to tell if it works. Next time he has a partial seizure, I'll forgo the THCA oil and instead try giving him half of his bedtime CBD dose (twice the size of the singular doses that I gave him today) and see if it stops a cluster from occurring.

So today, the first day of the last week of his very brief and abbreviated summer school session, he's home with me. The windows are shut to keep out the heat. The sky is a powdery blue laden with moisture. The phlox and lilies are blooming, the grass is greening up from so much recent rain. Calvin isn't drinking or eating and isn't what I'd call his best self. And he keeps seizing.

But tomorrow is a new day, and I'm holding fast to the knowledge that Calvin hasn't suffered any grand mals in very nearly a month, the last one being the ninth of July. And I'll muse on his yesterday, hoping there will be more good ones like it in our future.

Photo by Michael Kolster

8.02.2018

milestones

After several discouraging months of Calvin suffering too many grand mal seizures, in late June I stopped keeping track in my daily journal the number of days between them. Perhaps, I thought, by not counting the days in ink, I'd be erasing some of the stress that frequent seizures put on me. After all, it was dispiriting to see him have three within fifteen hours two months in a row and, at the very most, go only eight or nine days before suffering another. Recording their frequency on paper seemed only to serve in validating—and perhaps in some strange, cosmic way sustaining—their pattern.

This morning, however, I had to tell Michael how delighted I was that, in the past thirty days, Calvin has had only one grand mal seizure.

"When was the last time that happened?" Michael asked.

I went to my desk and pulled out a stack of past calendars, paging through them in search of a month in which Calvin had less than two grand mals. After a few minutes I found one; it was August 2013.

For five years, Calvin has had between two and nine grand mal seizures every single month, totaling as many as fifty-eight in one year, plus as many as 105 annual complex partial seizures. And though that is far fewer seizures than many children endure, I'm heartened to think that, since starting Palmetto Harmony CBD oil, my son could be on track to have as few as five or six more grand mals before the end of the year, perhaps even fewer, with only a smattering of complex partial seizures.

There is no guarantee that upcoming months will yield such a positive outcome; epilepsy has a way of catching up. Even so, having reached this milestone, I have felt my anxiety level drop not worrying as much about an imminent seizure. I'm beginning to dream about one day decreasing Calvin's Keppra. I'm beginning to muse on traveling more, and as a family. I'm hopeful Calvin's progress might improve. Maybe he'll be able to walk with us on the beach for a spell, like Michael and I did yesterday, something Calvin has never truly done more than once in his life and, even then, not very far or well.

For now, though, I'll bide my time enjoying this slice of seizure freedom, hoping it becomes his new normal.

click on photos to enlarge.

7.31.2018

anecdote

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

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

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

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