june blues

If it weren't for the pink, purple, white, red and yellow flowers in my June garden I'd be blue, blue, blue.

At eight o'clock on Friday night Calvin had the first of three, intense grand mal seizures within a span of twelve hours. I'd been out enjoying my usual evening stroll in the garden when I heard a rhythmic rustling over the baby monitor that was slung around my head. Seconds later, I heard my boy's quickened panting.

"Michael!" I yelled, "He's having a seizure!"

I ran as fast as I could, kicked off my rubber boots in the mudroom, grabbed a pre-made syringe of homemade THC cannabis rescue oil from the refrigerator door and scrambled upstairs. Michael had already unlatched the safety netting and side panel of Calvin's bed, so I slipped in next to our son, held his head and squirted the oil under his tongue. Within about twenty seconds, the violent convulsions stopped and, soon after, Calvin was fast asleep. He slept unusually calmly until four-thirty when I felt his body stiffen, then begin to spasm again. I repeated the THC measure (I'd brought a second syringe up in anticipation of a another fit) and again it seemed to shorten the seizure. Regrettably, thought, it did not thwart the third seizure four hours later, so I resorted to giving Calvin the rectal Valium, which his addicted body seemed to need because of his incremental benzodiazepine withdrawal.

Saturday, Calvin was listless, wobbly, congested, and had a low-grade fever. Recently, there had been one case of pertussis reported at his school, so we took him to the doctor to test for it. Calvin has a decreased threshold for pneumonia and bronchitis likely due to his neurologically-based low muscle tone, so we try to nip early evidence of possible bacterial infections in the bud. He's on an antibiotic and seems to be doing better, or so we think.

These recent clusters of seizures cause me to rethink my protocol. Next time Calvin suffers a seizure early in the night I'll give the THC to stop it, followed by a preventative dose of THCA, perhaps with some CBD, at midnight. Then, if he still has a second seizure, I'll give him the rectal Valium rather than waiting for a third to occur.

Though Calvin had three seizures, all more convulsive than usual, they were markedly shorter, and we were able to avoid the hospital where he is inevitably exposed to more germs, needles, leads, splints, bandanges and stress. In fact, since we began giving Calvin the rescue THC oil a few months ago, we've skirted the hospital all together, even in the face of three bouts of status epilepticus.

Today, it's raining outside and my boy is back in school. Besides the seizures, he's been pretty happy lately, sleeping way better and is much, much calmer for the most part. My guess is that the slight reduction in his Keppra a while back and the elimination of about 80% of his benzodiazepine over the course of the last fourteen months have improved his quality of life. He's drooling less, walking better and is more placid when being held.

Even so, Calvin's relentless seizures, drugs and side effects regularly make me blue. But if I just look outside at the bounty of color, texture and lush fragrance that is my garden—a garden younger than Calvin—I realize that with some hard work, patience and resolve, next year it will be even better and I think, maybe Calvin will be too.

Calvin in his nurse, Beth's, arms on Saturday

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