jekyll and hyde

The two-and-a-half-hour drive to Boston, usually drudgery, was made worse by the shrieking fiend sitting next to me. The traffic didn’t help, nor did the string of drivers texting or otherwise being distracted, mostly by electronic devices, from driving straight and well. We landed on schedule, this time having left the stroller at home, but not having left the extra diapers and wipes, the extra set of clothing, the more than half-dozen bibs, the handful of kerchiefs, the precisely chopped-up fruit and sandwich and vegetables, the toys, the extra water, the cannabis oils drawn up into various syringes then capped, the yogurt, the spoons, the spatulas, the Keppra the Diastat, the extra meds in case we got stranded, the ibuprofen the Tylenol the rectal thermometer the suppositories the cell phone the paperwork and the magnesium citrate pills.

“I hope Calvin isn’t like this during the appointment,” I yelled up to Michael, who was driving us, “Maybe he’ll surprise us.”

And he did. Calvin was stellar at his annual neuro-ophthalmology appointment. He walked most of the way from the car to the hospital, stood erect and still in the elevator, albeit staring at the overhead lights, sat patiently in a big chair while I fed him his lunch, walked steadily, didn’t whine, didn’t drop down, didn’t go batshit crazy, sat in the examination chair by himself. He didn’t fuss when they rubbed his scalp with alcohol then stuck four leads on his head then made him look at a gridded screen in a darkened room while sitting on Michael’s lap as I held his chin and they patched each eye trying to determine how well he sees with his glasses on (20/60 - 20/100). He even smiled and giggled when Dr. Strominger put drops into his eyes to dilate his pupils.

Unfortunately, the trip home proved to be as bad as the trip down. It was like we had two kids: one Jekyll, the other, Hyde.

I know this Hyde fellow way too well. He appears in the days and hours prior to a seizure. He drops down to the ground often, whines, screams, grinds his teeth, drools, walks in circles, has warm skin, metallic breath, red hands and ears, a rashy chin and goes completely hysterical at times, rubbing and snapping his fingertips in a frenzy inches from his face. By Thursday, there was no doubt Hyde's appearance meant our boy was going to have a seizure. Sad thing was, he had several: two grand mals in the wee hours of Friday morning, a series of partial seizures for most of the rest of the day and two more last night.

It is unclear if my first batch of THC rescue medicine helped. Perhaps the dose is too small to have had any significant effect on the seizures. Certainly, it helped Calvin sleep, but it did not thwart the serial partial seizures, the sleep and wake-to-seizure cycle. For those, I finally decided to give him the Diastat rectal Valium to avoid the unstoppable and dangerous seizures that sometimes land us in the hospital. It worked. Kind of.

Calvin will likely go eight to ten more days seizure free. This is his cycle, and has been for the good part of a year. If I look back at last year's calendar, besides the withdrawal episodes, he is having about the same number, if not fewer, seizures as he did when he was taking three times as much benzodiazepine and no cannabis. In my mind, this bodes well for the cannabis and for getting him off of the benzo since it is not a long-term solution for our son.

So, we'll slog through these next six months of weaning the addictive drug and hope Calvin can thrive and survive. We'll have to deal with this monster Hyde plenty more times, but hopefully he'll respond well to my cannabis potions and hopefully, without too much trouble, we can find the dosing sweet spots necessary to improve his quality of life while containing his seizures. Too bad we can't just ask Dr. Jekyll.

My little Hyde:

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