7.24.2017

love and gratitude

Every once in a while life gives me a little bit of sugar.

After a trying Saturday during which Calvin was as stubborn as ever making it nearly impossible to grocery shop or do much of anything, the woman in line behind me at the grocer offered to fetch two limes I'd forgotten to get, and the main reason I'd gone shopping in the first place. Calvin had been so difficult—attempting to drop to the floor, turning on a dime nearly taking me down, planting his feet refusing to make any forward progress—that by the time she returned with the limes I was weeping from a mix of self-pity and gratitude. I thanked her and she smiled sweetly, seemingly pretending not to notice, perhaps to avoid making my despair any worse.

Later that afternoon, Michael and I dealt with what we thought might be a sick boy headed for a major seizure; the kid exhibited nearly every harbinger in the book: rashy butt, seizure breath, bouts of shrieking, dropping down, spells of spaciness and pale lips. An hour before his bedtime he lead us upstairs and patted on his bed, so we tucked him in early. Just then, Nellie began barking wildly at someone on the deck.

We were the target of a home invasion, and not the first of its kind by these particular culprits. Some dear friends, when they learned we could not join them for dinner, brought the entire meal to us. With Calvin seemingly asleep, we quickly retired to the screen porch where we sipped drinks, ate aged cheddar, and dipped blue corn and pita chips into a smooth red pepper coulis. It had been months since the six of us had gathered around a table together, and so we toasted to our friends' presence, thanked them for their generosity, then raised our glasses in honor of a couple of dear friends who, regrettably, had moved out of town the week before.

Living at the eastern edge of the time zone, we were bathed in twilight for quite a while. We sat surrounded by thirsty rhododendrons and azaleas, and day lilies flashing scarlet and yellow petals. One guest noticed that the string of hot weather and the long spate without rain had crisped most of the lawn into straw. We all hoped the heavy sky rolling in meant rain. And what with all the news about wars and despots and oligarchs and liars, it seemed the world needed a good cleansing, but the rain never came.

Michael helped our dinner hosts bring out a platter of pork tenderloin medallions with jars of chutney, plus bowls of herbed rice salad, rustic tomato salsa and a salad with apple and homemade candied pecans. The evening began with a personal anecdote about a fart (not mine), that inspired two amusing stories about dog shit, which then led to more lewd comments and hilarity. Several weeks, if not months, had passed since I last laughed until I cried, so it felt satisfying to wipe wet lashes wearing a smile. We went on to discuss books and politics and films and the wedgies Wonder Woman sports (on her feet) in the latest movie. We mused on San Francisco and the Bay Area since all six of us lived there in our former lives. And we asked after each other's boys realizing, as if for the first time, that we are all parents of only-child sons.

As dusk turned to night, Michael lit candles and oil lanterns, and not long after came our dinner host's to-die-for lemon curd cheesecake, which was served on plates she had brought for the occasion. Relaxing there surrounded by my furiously funny friends and my beloved husband, I realized there is nothing that quite compares to communing over shared food and drink with wicked smart, zany, open, thoughtful, irreverent friends amid candle glow on a warm summer evening.

When I finally crawled into bed, my mind was buzzing with thoughts of the laughter and happiness that had dissolved the bitter difficulties of my day. But it didn't take long for the angst over my sleeping, epileptic child to creep back in. So, I helped myself to sleep by repeating, in my mind, the words love and gratitude to the tempo of my resting breath.

And Calvin made it through the night.

7.22.2017

conundrum

Two weeks have passed since we discovered Calvin's toxic blood level of vitamin B6 and eliminated it from his regimen. I felt its removal was warranted, though I wonder if perhaps its abrupt withdrawal has messed with Calvin's benzodiazepine and/or cannabis levels seeing that they all use the liver's cytochrome P450 to metabolize.

In the removal's wake, Calvin has been more lethargic than usual. Perhaps, as his white blood cell count indicated, he was/is suffering from some sort of virus. He has improved slightly with each passing day, and I haven't seen a seizure in a week, but his stubbornness, as manifested in his refusal to walk where we want him to, and his tendency to want to drop down in those moments—often in the middle of a crosswalk—has made taking care of him exasperating; there are few places we can take him where he is willing to walk more than a couple of yards, though he is fully capable of doing so (we know this because he likely walks virtual miles while at school).

We stay at home more than usual, it seems, and even getting Calvin to stroll in the garden with me lately—a daily routine—has proved challenging. I feel our already small world closing in on us, and the places we can take him are limited to the grocery store, the health food store, the donut shop, the coffee shop and Woody's house three doors down. Often, he won't walk for more than a few steps before attempting to drop down, and I have to yank him along like a mule since he is getting too big to carry for any distance, in addition to my refusal to enable this behavior or play into his pranks.

Complicating an appropriate response to his behavior is that I never really know if his stubbornness is like that of a toddler exhibiting his will, or if it is because his bones or muscles in his hips or thighs or knees or shins or ankles or feet hurt or are numb, or if he is feeling dizzy or headachy or sickly, or is experiencing the effects of benzodiazepine withdrawal, or if a seizure is coming. And so I find myself swinging from patience to intense aggravation, and I feel the scowl carving lines into my brow.

In passing, friends ask us the customary question about our plans for summer.

"We can't really go anywhere with Calvin," I say, mostly not bothering to explain how we'd have no safe place for Calvin to sleep and great difficulty doing any activity with a non-compliant, non-verbal, incontinent, agitated, thirteen-year-old boy save strapping him into a thirty-five pound adaptive stroller which has major limitations and aggravations of its own.

And so, we find ourselves in a decade-long conundrum: spending most of our time at home moving about the house from bed to jumper to bathroom shutters and back again. I try, though not hard enough, to get us both out of our safe yet monotonous and psychologically ruinous comfort zone, which is the only way we'll both continue to grow.

7.15.2017

enigmas

The sound my son makes when his brain launches into a grand mal seizure is terrifying—blood-curdling really. It's a shriek and a scream and a howl and a moan all at once, and this morning's was one of the worst I've heard.

Since one-thirty a.m. I'd been responding to my boy of responding kisses, when he first woke to a partial seizure, his lips pale and dusky from minutes of the shallowest breathing. I squirted a tiny bit of homemade THC tincture under his tongue and waited, hoping, for the seizure to stop. When it was over, I crawled in bed next to him—yet again—exhausted from too many days and weeks and months and years of the chronic sleep deprivation epilepsy makes certain. When Calvin woke an hour later, I gave him his benzodiazepine early, aiming to thwart what is often the inevitability of a second, more serious fit. When he woke again at four-thirty, I gave him his morning Keppra early, plus an extra half tablet for added protection. At that point Michael switched beds with me so I might get some better rest having dealt with the sleepless nights of three grand mal seizures within the span of five days.

Despite my best efforts, Calvin woke to a grand mal seizure at six-twenty, his screech piercing the quiet as if he were being tortured. I ran to his side, grabbing the vial of rectal Valium I'd set out in preparation. Michael unfastened Calvin's diaper and, as my boy spasmed, I inserted the vial's tip into his rectum and pushed the plunger dispensing 7.5 milligrams of mind-numbing gel into his body. His convulsions began slowing until his body became limp, his eyes half-mast, dull and fading.

Back in bed with him, I listened to the birds chirping as the world around us awakened. Before drifting back to sleep, my arms around my son, I worried about the thirsty trees and shrubs in the back garden. At this hour I imagine I can hear everything—birds flitting and splashing in the stone and ceramic baths, squirrels scampering up trees, bees feasting on flowers, ants marching up rough, parched bark, pollen falling on the leaves . . . Calvin's heart beating. It's during this quality of sublime quiet, if not for angst, that I can best fall to sleep.

Today my child is pale and listless, his body having been riddled by violent spasms, his brain bathed in too many potent elixirs. Perhaps he's sick, or going through a growth spurt, or suffering a wave of benzodiazepine withdrawal symptoms, or maybe adjusting to the recent and abrupt elimination of toxic levels of vitamin B6. In any case, my non-verbal, legally blind, incontinent boy and his malady are enigmas. They leave me, in the most serene of moments—which in this advancing world seem to be retreating—to worry and wonder if we will ever enjoy liberation.

Calvin and his Gpa

7.13.2017

missing pieces

With Nellie on the leash I looked over my shoulder to see a dark sky rolling in from the north. Being from Seattle I know when rain is coming and can usually smell it. We walked along at a good clip, my rubber boots whapping my shins with each step.

At the fields I let Nellie off leash where she ran and dove and rolled in a lawn beginning to wither from too many days of hot weather. The leaves of trees flanking the field turned their silvery backs to the wind. I closed my eyes to better hear the rush of it and to feel its fingers caressing my skin. Finally, I kicked off my boots to stroll barefoot in the grass, something a foot doctor once told my twelve-year-old self I'd never be able to do.

From an open door I heard the voices of children singing songs from the seventies. A couple-hundred kids were seated in bleachers following along with a small band playing covers of Proud Mary and other pieces by artists including Helen Reddy and The Beatles. I walked over to the field house and peered in. Several young camp counselors in neon green tees were monitoring the children and cheering them on. I asked one of them how the kids knew the words in the absence of any booklets or projected lyrics. She explained that the lyrics had been simply taught by the band and then practiced daily.

"Amazing brains," I said of the kids' astounding capacity to learn and memorize so quickly. Then I thought about Calvin's frail brain and its missing pieces.

Suddenly, the girl cautioned me just as a throng of seven and eight year olds made a mad dash for the door. I had to shoo Nellie from the stampede and away from the table of snacks the kids were headed for. Above us a menacing sky opened up and a rush of emotion rained over me seeing the children gleefully wield popsicles and bananas, watching them laugh and skip and jump and run. I wept openly, grieving Calvin and all that he is missing, albeit obliviously, in and of the world.

Photo by Michael Kolster

7.09.2017

toxic heartache

As I begin writing this I am weeping—weeping for my child who I may have, in some sense, unwittingly poisoned with P5P, aka coenzymated vitamin B6.

Late last week, a nurse phoned to give me some results of a routine blood draw Calvin had done. He had given a total of seven or so vials of blood to test his thyroid function plus a customary metabolic panel, complete blood count, manganese, magnesium, copper, ferritin, D and B vitamins. Initial results came back normal with the exception of a low white blood cell count, indicating he might have a virus contributing to his recent spate of grand mal seizures.

Friday, however, she called back with some alarming results: Calvin's vitamin B6, a test which I'd requested for the first time and as somewhat of a fluke, was 144. Because the reference range for a child his age is a mere 3 to 35, the covering pediatrician suggested I immediately discontinue Calvin's B6 supplement. The nurse went on to inform me that vitamin B6 toxicity can result in things like flushing, tachycardia (rapid heart beat) and headache, all of which I've witnessed recurrently in Calvin.

For at least a year and a half I've been giving Calvin the B6 supplement, which was recommended to me by a functional medicine specialist, and signed off, reluctantly, by his pediatrician. The supplement, if I remember correctly, was meant to boost Calvin's immune system and perhaps to facilitate the production of GABA, which Calvin's brain is craving during his protracted benzodiazepine withdrawal. I was advised to initiate him on 50 milligrams per day, then at some point later I increased it to 100 milligrams daily when Calvin's seizures worsened. No one advised me to check his B6 blood level so, foolishly, I never had; I should have known better. Somehow, for whatever reason and perhaps subconsciously, this time I did.

After hanging up the phone, a million thoughts went through my head:

could his tachycardia and flushing be due to B6 rather than from seizures? could his tachycardia trigger seizures? could his tachycardia weaken his heart? has he had a persistent headache all these years due to B6 toxicity? are the symptoms i usually attribute to benzodiazepine withdrawal actually due to B6 toxicity? why didn't i research B6, its dose limits, its contraindications, its toxic side effects—like i have for years for all of his other meds—before giving it to Calvin? how could i be so reckless?

Just before writing this I went online to research B6 toxicity. I learned that Calvin's dose, according to his age, should be roughly one milligram per day; he was getting fifty to one-hundred times that for well over a year! I also learned that vitamin B6 toxicity can result in abnormal heart rhythms, decreased muscle tone, drowsiness or sedation, feeling of tingling on the skin, headache, heartburn, loss of appetite, nausea, rash, stomach discomfort or pain, sun sensitivity, and vomiting. 

I wondered if some of Calvin's finger snapping, and leg and arm rubbing are due to B6 toxicity. I went on to read that B6 toxicity can cause one to have muscle pain or trouble with walking, can interfere with one's proprioception, and can induce seizures. Is this why Calvin is stubborn and so often wants to drop down while walking? It can also interfere with the way that the body processes certain herbs and supplements which utilize the liver's cytochrome P450 enzyme system (e.g. cannabis, as does the benzodiazepine clobazam) and that, as a result, the levels of these may be altered in the blood or may alter the effects that they have on the body's P450 system. Having gained knowledge of cytochrome P450 during my research on cannabis over four years ago, had I investigated B6, I would have easily come across these factors—details that the functional medicine specialist and the pediatrician likely weren't aware of—and, with little doubt, I would have objected to giving the supplement to Calvin.

Since beginning this post, my tears have dried, having taken Calvin with me for a morning stroll through the garden. He was mostly compliant and seemed happy to be outdoors on this sunny morning, the birds chirping and flitting around us, roses and day lilies flaunting their brilliance. I sit here now wondering—hoping—that the discontinuation of Calvin's B6 supplement will result in the disappearance of any pain, tingling or weakness he's been suffering, and perhaps even result in the decrease of seizures. I also wonder how its absence will affect the levels of cannabis and benzodiazepine in his blood and how that might present in terms of seizure control, behavior and other side effects. It may prove impossible to know for certain.

My main fear and cause for great heartache, however, is that I've poisoned my child to the extent that the effects of B6 toxicity might be irreversible. He suffers so very much from one moment to the next and it pains me to think—in the absence of most of parenthood's joys that were spirited away two weeks before Calvin's birth along with much of the white matter in his brain—that the child I do have has been further damaged by the substances we've given him in some blind attempt to make things better.

Glimpse of a good moment: Calvin with Gma Kolster and Abby

7.06.2017

calvin at home

To see this sublime photo series by my husband, Michael Koltster, click here, then scroll right.

Photo by Michael Kolster

7.05.2017

the good, the bad and the ugly

the good:

celebrations with smart, funny, worldly people. calvin. phlebotomists who make house calls (one-stick-wonder lynn, and arthur, specifically). truth. naps with my boy. nellie. sleep. husband. shaomai burgers. empathy. rambling gardens. guacamole. walking barefoot in a grassy field. backyard fires. philanthropy. breezes. neighbors. birdies. flowers. sunshine. rain.

the bad:

seizures. the ass in the oval office. the ass's lackeys. their primitive, small-minded, exclusionary, hurtful and oppressive policies. manipulators. blood draws. headaches. viruses. sleep deprivation. white supremacy. liars. tax dodgers. benzodiazepines and their withdrawal. drunken students (presumably) hollering, and peeing (again), in the dark near our garden. tyrants. deceit. misogyny. poverty. war.

the ugly:

sleep-deprived me. the ass in the oval office. greed. excess. fear. drug-induced mania and other side effects. impatient me. white supremacists. the ass's lackeys. self-aggrandizement. angry me. the treatment, by some, of immigrants and refugees. racism. bigots. religious zealots and hypocrites. gawkers. bullies. diehards. whiners. fraudsters. jerks. apathy.

Photo by Michael Kolster

7.02.2017

how it goes

Calvin's brain squeezed off another grand mal seizure at ten p.m. on the thirtieth of June, bringing last month's total of grand mals to four, in addition to sixteen partials. Just last night he had two more—one at eleven p.m. and, despite having given him a bit of THC rescue med, another two hours later. After the second one, I was fretting about the Diastat rectal Valium which we gave him again, fearing if we use it too often he'll get addicted and it might lose its effectiveness. Dread washes over me when I think of that because it is not hard to imagine a seizure or cluster of them that won't stop, followed by a trip to the ER and ultimately, if no traditional rescue meds work, a medically induced coma. Sometimes, with refractory epilepsy, that's how it goes.

I'm not sure where to go from here. We are so close to eliminating Calvin's benzodiazepine all together (1.5 mgs per day down from a high of 35) and yet so far away (six to nine months or more to go). And though his grand mals still average just over four per month, his partial seizures during this benzo withdrawal, which is complicated by puberty, have for the most part gradually increased. My hope is that once we get him off of the benzo his seizure activity will eventually calm down. In the meantime, however, it appears we may have to wrestle with the reality of him suffering more.

While in bed with him I mulled over options in my head. I'll bring Calvin to the doctor to get weighed to see if he might have outgrown his Keppra dose. We'll also get some blood work done. I don't want to start him on a new pharmaceutical until he is off of the benzo, if at all. I'm loathe to increase his Keppra since he is already on a very high dose. He is taking no small amount of THCA cannabis oil, and though we could try increasing his CBD cannabis oil, it is expensive and not covered by insurance. I could try adding my homemade THC tincture to his bedtime regimen, but it is made from a hybrid strain, rather than a calming indica, and so not necessarily the best. Plus we hesitate to keep tossing more medication at our boy, and though cannabis is a plant, it is still a powerful drug.

This morning I had a thought: switch his Haleigh's Hope 20:1 CBD:THC oil to the 15:1 ratio; I've heard some children do better with slightly more THC in the mix, and it wouldn't cost us any more.

So, we'll hold off on the next reduction of Calvin's benzo, keep him at the same dose of Keppra to limit variables and try the lower ratio CBD oil (same dose) and see how it goes.

Photo by Michael Kolster