At four-thirty yesterday morning, the full moon a day from cresting, Calvin's grand mal seizure ripped us out of deep morning slumber. I had suspected its arrival because of his agitation and manic outbursts on Monday, neither of which we've seen much of lately. He's also sick with a stuffy, runny nose, which, like most kids with epilepsy, lowers his seizure threshold. He was quite lackluster, a bit spacey and very quiet, so I kept him home from school. The entire day he seemed in a fog, confused and walking in circles. Looking at his wan face, I had a bad feeling he wasn't out of the woods yet. At lunch, he nearly choked on a bit of sandwich, and he kept wanting to be picked up, both signs a seizure was headed his way.
Calvin's nurse and I conspired over what extra measures to take, if any, to avoid a repeat the next night and morning. We decided to take no further action since he'd already gotten some extra Keppra that morning and the night before.
Until yesterday morning, we had all enjoyed Calvin's longest grand mal-free stint in over a year: twenty-one days. I should clarify that I'm counting days between grand mals since those are his most violent and obvious ones. His partial complex seizures, parasites to Calvin's grand mals that began appearing again late last year, are often difficult to discern causing me to wonder if I am mistaking them for benzodiazepine withdrawal symptoms such as rapid heartbeat, hyperventilation, hallucinations and agitation. Sometimes, however, they are unmistakable.
Calvin slept well last night until just after midnight, the full moon mere hours from cresting, when he awoke to a complex partial seizure. I knew it was a seizure because his breathing stalled, he made the classic swallowing sounds and stared vacantly at his fingers. I watched his lips turn pale and his face flush. Fearing a subsequent grand mal, I ran downstairs and drew up a syringe of THCA oil and squirted it into his mouth, a strategy I thought I'd try in an effort to break the early-morning seizure cycle. Alas, after going back to sleep for a couple of hours, Calvin shrieked his way into a full-on grand mal. I attempted to employ a measure Michael had learned from Noni, a sage he met in Hawaii, to stop the seizure by applying pressure to the space between his upper lip and nose using the first joint of my index finger. The seizure, which had been running its course for close to two minutes, stopped within seconds.
As Calvin whimpered in its wake, we changed his diaper and wet shirt then I crawled in next to him and slowly but surely syringed in his benzodiazepine three hours early. This measure has in the past prevented further grand mals. Though Calvin didn't have another grand mal, he had two partial seizures later this morning. During the second one, which didn't stop with lavender essence or pressure under his nose, I gave him six milligrams of THC rescue med inside his bottom lip; the seizure stopped on a dime.
At just before noon Calvin seemed to be slowly returning to baseline, save a crusty nose. His nurse arrived and, seeing Calvin doing better, I took Nellie to the fields. On the way back I got the dreaded call; Calvin had had some sort of non-convulsive seizure, his lips turning blue, his eyes rolling back into his head, after which he wanted to fall asleep. Running out of options to stop the cluster of fits I decided to try giving him an extra dose of the new CBD oil we'd started using two weeks ago. Afterwards, he slept for thirty minutes or so and then, shortly after getting his four o'clock THCA dose, he had another partial seizure, perhaps before the ingested oils had had enough time to kick in.
Bent on avoiding a trip to the hospital I racked my brain for any maneuver we could use to prevent the cluster of partials rolling into a prolonged grand mal. I remembered I'd given Calvin his benzodiazepine three hours early, at 3:00 a.m., so at 4:30 p.m., an hour and a half before his usual dose, I gave him his clobazam and knocked on wood.
Now, the full moon having fully crested at noon, its gravity tugging hard on my son's delicate brain, I'm hoping Calvin's seizures, like the beautiful orb in the sky about which I'm so conflicted, will soon begin to wane.
Calvin's nurse and I conspired over what extra measures to take, if any, to avoid a repeat the next night and morning. We decided to take no further action since he'd already gotten some extra Keppra that morning and the night before.
Until yesterday morning, we had all enjoyed Calvin's longest grand mal-free stint in over a year: twenty-one days. I should clarify that I'm counting days between grand mals since those are his most violent and obvious ones. His partial complex seizures, parasites to Calvin's grand mals that began appearing again late last year, are often difficult to discern causing me to wonder if I am mistaking them for benzodiazepine withdrawal symptoms such as rapid heartbeat, hyperventilation, hallucinations and agitation. Sometimes, however, they are unmistakable.
Calvin slept well last night until just after midnight, the full moon mere hours from cresting, when he awoke to a complex partial seizure. I knew it was a seizure because his breathing stalled, he made the classic swallowing sounds and stared vacantly at his fingers. I watched his lips turn pale and his face flush. Fearing a subsequent grand mal, I ran downstairs and drew up a syringe of THCA oil and squirted it into his mouth, a strategy I thought I'd try in an effort to break the early-morning seizure cycle. Alas, after going back to sleep for a couple of hours, Calvin shrieked his way into a full-on grand mal. I attempted to employ a measure Michael had learned from Noni, a sage he met in Hawaii, to stop the seizure by applying pressure to the space between his upper lip and nose using the first joint of my index finger. The seizure, which had been running its course for close to two minutes, stopped within seconds.
As Calvin whimpered in its wake, we changed his diaper and wet shirt then I crawled in next to him and slowly but surely syringed in his benzodiazepine three hours early. This measure has in the past prevented further grand mals. Though Calvin didn't have another grand mal, he had two partial seizures later this morning. During the second one, which didn't stop with lavender essence or pressure under his nose, I gave him six milligrams of THC rescue med inside his bottom lip; the seizure stopped on a dime.
At just before noon Calvin seemed to be slowly returning to baseline, save a crusty nose. His nurse arrived and, seeing Calvin doing better, I took Nellie to the fields. On the way back I got the dreaded call; Calvin had had some sort of non-convulsive seizure, his lips turning blue, his eyes rolling back into his head, after which he wanted to fall asleep. Running out of options to stop the cluster of fits I decided to try giving him an extra dose of the new CBD oil we'd started using two weeks ago. Afterwards, he slept for thirty minutes or so and then, shortly after getting his four o'clock THCA dose, he had another partial seizure, perhaps before the ingested oils had had enough time to kick in.
Bent on avoiding a trip to the hospital I racked my brain for any maneuver we could use to prevent the cluster of partials rolling into a prolonged grand mal. I remembered I'd given Calvin his benzodiazepine three hours early, at 3:00 a.m., so at 4:30 p.m., an hour and a half before his usual dose, I gave him his clobazam and knocked on wood.
Now, the full moon having fully crested at noon, its gravity tugging hard on my son's delicate brain, I'm hoping Calvin's seizures, like the beautiful orb in the sky about which I'm so conflicted, will soon begin to wane.
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| Photo by Michael Kolster |
I hope some day we come up with more effective routes of administration for kids like Calvin. In my own experience, even with some amount of mucous membrane uptake through oral routes, it isn't fast enough, or potent enough most times to stop an impending seizure train. I hope an aerosol/vaporizable CBD option becomes available soon that's easy for caregivers to administer. (There's a reason people don't eat cocaine, right? Not quite the same effect.)
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