11.16.2017

dc or bust

After a month of angst, this morning I boarded a plane bound for Washington DC, flying on a ticket that was meant to take me to the Womens March last January, but didn't because I got cold feet.

As I made my way through the Jetport security I heard someone call my name. I looked over my shoulder to see my friend Lynette, a woman who used to be my colleague and became my boss at the last job I held before Calvin’s birth, which was as a senior apparel designer at a major outdoor company in Maine. We embraced then headed for the gate where another of my former colleagues, Jackie, was waiting. The women, both faithful followers of my blog, and two of only a handful or three of people I liked and respected at my job, were traveling together to QVC headquarters hoping to place a line of shoes Jackie designs, called Jax and Bard.

When the three of us gave each other a group hug, I told them that just yesterday I had seen messages from them both on social media and had looked them up to see their lovely faces. Jackie said, “there are no accidents” and I promptly stated my disbelief in such notions.

We had some time to kill before boarding, so they suggested we get Bloody Marys at the bar. It was just what I needed to unravel my worries over leaving behind Calvin and Michael to fend for themselves.

While boarding the plane, I glanced down at the small pink and green floral kerchief I tied to my luggage so it can be easily identified, a Liberty Print square with crocheted scalloped edges that Lynette had brought back to me from London over fourteen years ago. I’ve used it to flag my luggage all these years in-between. The words, there are no accidents ran through my brain as a twinge of nostalgia pricked my skin.

On the flight south we sat together in the last row, caught up and reminisced. They told me that often my blog brings them to tears; I told them how much their loyal readership means to me. We traded war stories of our employment, asked after former colleagues, and fawned over Jackie's shoe designs.

I made it to DC safely and called home to check on my boys. Calvin was happy splashing in the bathtub and Michael seemed just fine. And, yes, I am as crazy as I look in this photo, especially when I'm about to be citified.

Selfie by Jackie Lindstedt

11.13.2017

tinkering

This month has already been a terrible one for Calvin, mostly in terms of seizures rather than behavior. I'm trying not to sink back into despair after having enjoyed a pretty good September and October which I had hoped meant the beginning of better days for my son.

After yesterday morning's grand mal seizure, the sixth one in just over two weeks—a number that I consider high for an entire month much less seventeen days—and having had seven partial complex seizures in the span of five days last week, I laid with Calvin in bed racking my brain about what I should do next.

The thought occurred to me that perhaps the CBD might be the culprit and that I should cast my net out to other parents on social media asking them if their children have experienced an increase in seizures with the addition of CBD. Scores of parents confirmed my hunch.

So, yesterday we halved Calvin's CBD oil. He slept well last night and did not have any partial seizures this morning. After I put him on the bus, I took out my calendars and, starting with 2014 when I first began giving Calvin a homemade THCA oil and, two months later, started his benzodiazepine wean, I charted his grand mal and partial complex seizures. I saw what I had not seen before: what looked like a pretty clear correlation between beginning a CBD oil (seven months after the advent of THCA) and the re-emergence of partial complex seizures which had been virtually absent for years. At the time, I had introduced the CBD because of a fearful uptick in grand mals, and I remember thinking that the partial seizures and spates of status epilepticus were due to the benzodiazepine withdrawal.

There is no way of knowing for sure, but it will be interesting to see if my tinkering—this decrease in CBD oil, perhaps its eventual elimination—will result in the lessening or disappearance of Calvin's complex partial seizures. Cross your fingers and knock on wood that things get better and don't go all to hell.

Photo by Phoebe Parker

11.11.2017

some things stay the same

Hard to imagine this video was taken almost six years ago; some things change and some things stay the same.

This was pretty much what my day looked like today, minus the safety harness Calvin is wearing, minus the husband by my side, minus Rudy The Dog, minus the levity on that particular day. Calvin still insists on his quest to stare at the low southern sun; it is the bane of my existence, causing me to spend all of my time trying to eclipse its existence to the degree that my lone shadow can.

But after I screamed at the top of my lungs for him to stop, I impatiently loaded him into the car and took him to the gelato shop. There, he was compliant and seemed to love the frozen, minty-chocolate treat, then walked two blocks on downtown streets in near freezing temps without balking even once. Later, Calvin was content in the car on the drive to Michael's studio, then waiting for him to put his motorcycle to bed for the winter and to siphon its gas into our car.

Tonight, the fire is roaring and it is meant to get into the teens. We have leftovers of a white bolognese over rigatoni, and Repo Man is cued up on the screen.

11.07.2017

feeling defeated

Years ago I lost my religion. Had I not then, however, there's little doubt I'd have lost it raising a disabled child with a chronic condition as heinous as epilepsy—just one of the many things in life, besides starving children and war and genocide and massacres in churches, that proves to me there is no merciful God in the heavens.

At three-fifty this morning, Calvin suffered another grand mal, bringing his two-week total—not including complex partial seizures—to five after having enjoyed nearly an entire month having had only two. Michael is on his way home from Boston today, so I had to go it alone.

Before the seizure, I got up more than a handful of times to lay Calvin back down in his bed and give him some of my homemade THCA tincture aiming to thwart a somewhat-anticipated seizure. I awoke later to the blood-curdling shriek that usually announces the ordeal. I made sure his head, hands and feet weren't smacking the bed. I yanked off his socks and rubbed frankincense on the soles of his feet. When it was over, I gave him some THC. Then I gave him his benzodiazepine early. I chased them both with syringes of water. I changed a soaking diaper. I got in next to him. He fell asleep. He woke minutes later having wet himself and his bed. I changed him again. Every few minutes he kept sitting up, banging the bed, working his fingers in a frenzy in front of his face, his heart beating furiously in his chest.

He's sitting in front of me now and I hardly recognize him, the way he juts his jaw, purses his lips and clenches his teeth creating a phantom dimple on the side of his cheek that I only see in the hours before a seizure. He's fingering like mad. I feel bad for him and yet irritated and slightly repulsed.

I wonder how I can keep this up. Keep following him around the house. Keep running for him and lunging to prevent him from a fall whenever he gets into a stand. Keep thwarting his eye-poking and sun-staring and shirt-biting and head-banging. Keep changing his diapers and hearing his shrieks and chopping his food and wiping his drool and mopping his juice and laying him down and picking him up and holding his hand and giving him supps and watching him seize and never getting enough sleep, never able to finish any endeavor.

I wrote to Michael this morning telling him what happened. I told him I was feeling defeated. No doubt he feels helpless. All I want to do is go back to sleep.

Photo by Michael Kolster

11.05.2017

full moon fit

Last night, when the full moon was at its peak in the sky, I watched my son while his father held him as he seized. It was an unusual time for Calvin to have a grand mal, and had Michael and I not stopped giggling in bed, we might not have heard it at all. At first I thought the sound was Nellie licking herself, but when we quieted I recognized the rhythmic smacking of Calvin's lips.

Unlike most nights, I hadn't fully expected this one; I was sure Calvin would make it to day ten without any seizures in between. He'd shown only a few of the harbingers that ring them in.

Still, nine days without any kind of seizure isn't a bad stint compared with at least half of Calvin's last eight months. But it isn't long enough to be sure that the new CBD oil we switched him to, the one with slightly more THC than the last one, is doing any further good. What I am interested in seeing is whether this new oil from Haleigh's Hope might help limit the partial complex seizures Calvin is prone to having in the hours and days after most of his grand mals.

What does seem somewhat clear is that the new concentrated THCA tincture I made a few weeks back does appear to thwart his grand mals to some extent. Typically, when Calvin has a grand mal before midnight, he almost always wakes later to a second one. This time, having given him doses of the tincture just after the seizure, then at 1:30 a.m. and again at 4:00 a.m., he did not have any more.

My boy is still not back to baseline, and the last time he had an evening grand mal he suffered two more the next morning. So we'll sit tight here at home today, giving him a tiny bit extra THCA, thankful that the moon has entered its waning stage.

Photo by Unknown

11.04.2017

tricks and treats

Last Sunday's storm put so many of us out of power that town's Halloween celebrations were postponed until last night. So when five o'clock rolled around, I dressed Calvin in his best camouflage and walked him down to Woody's with his buddy Mary holding his other hand. We visited three other neighbors where Calvin managed to grab pieces of candy from each bowl, then attempted to put them into his mouth, wrapper and all. Though we hit half as many houses as we did last year, it was his best evening of trick-or-treating in his three-year history of going door to door, even with a boot splint on his left foot protecting a recent injury.

When Calvin was done, Michael and I snuck out for a date. As dusk fell we made the ten-minute drive to our friends' young restaurant, Salt Pine Social. There, we sat at the bar imbibing under ornamental lights that reminded me of wrapped candies. I marveled at the gigantic ice cube in Michael's glass of bourbon, one of several dozen that the bartender had painstakingly carved from an entire block of ice. One by one, tasty plates emerged from the kitchen. First, we enjoyed a pâté of bacalhau—the Portuguese word for cod—resting in a spicy tomato sauce with crispy fried mini polenta cakes. Next to arrive was a platter of local oysters on the half shell accompanied by an exquisite glass of madeira, all compliments of the chef. In between dishes our hosts stopped over to visit and to bestow us with hugs and kisses. After we had gobbled down the mollusks, we supped on plump grilled octopus, poached turnip and shaved radish disks steeped in ovgolemono broth. As we were finishing that dish along came another comp from the chef: a parchment-lined basket of tempura-fried avocado wedges with lime and chipotle remoulade (my mouth is watering just writing this). We finished with a medallion of monkfish liver the color of yams or dark pumpkin, served with dainty pickled blackberries, fried rice crisps, pear nuggets, jalapeño, charred cucumber and a drizzling of tangy ponzu sauce.

As we dined, I expressed my gratitude both silently and out loud for our many fortunes in this life—for having gotten our heat back within two days of the storm, for the huge tree having missed our house, for having the luxury of drinking at a bar and eating scrumptious food in a handsome establishment, for lovely friends and generous hosts, for colorful light fixtures that look like candies or planets and stars, for Calvin's friend and caretaker Mary, for gauzy scarves from Paris and sexy shirts from Salvation Army, for reliable, comfortable cars, for beautiful gardens, for Calvin slowly coming off of benzodiazepine, for cannabis as his medicine, for a boy who is making strides and seems to be getting incrementally better by the day, for kind and loving neighbors, for a Halloween free from seizures or hospitals or accidents or surgeries.

Back at home, the large bowl of candy we had left out with a note asking children to "please take just one or two" was empty. Knowing full-well seventy children had not come by, no doubt someone had absconded with the sweets. Woody told me later that he'd seen a group of teenage boys lurking around the porches of those of us who had left candy in our absence. We had been tricked, even though we had offered them treats in return for mercy. In the scheme of things, though, and in recounting so many fortunes, I thought to myself, it's a first-world problem.

Photo by Mary Booth Scarpone

11.02.2017

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