I wrote in Calvin’s daily journal last night at six, “CALM (suspiciously).” I should have heeded my suspicions and given Calvin that extra dose of THCA cannabis oil at bed, but I didn’t because he was so calm and had seemed to get past some of the seizure omens which I typically use to gauge these sorts of things. After all, I don’t want to over medicate my kid if I don’t see the need, even if it’s just with weed, but then again I'd do almost anything to save my son from even one seizure. That's one of epilepsy's conundrums.
Just after six, I kissed my son and my husband goodbye and patted Nellie on the head, then swung by Lauren’s to pick her up for a bite to eat and a drink. We saddled up to the bar, sipped our cocktails and had just begun eating when my phone vibrated in my pocket. As always, I jumped, and probably said fuck, because my cell phone is reserved solely for urgent calls about Calvin.
I answered the phone and Michael told me that Calvin had had a grand mal seizure, shorter than most, but a seizure nonetheless. It was only seven p.m., an unusual time for Calvin to seize, but when I remembered the recent time change, it made more sense. I hung up and said I’d be home soon as I could, but after thinking about it further, I called him back and asked him to give Calvin an extra dose of THCA oil if he could.
When I returned home all was calm, Michael perched in the dark on Calvin’s changing table, the glow of his ipad illuminating his face. Our boy seemed calm, secure and fast asleep, so, after readying two extra doses of THCA oil, I got into our bed not wanting to disturb our boy.
At 10:45 p.m. I heard Calvin wake up, so I changed his wet diaper and gave him one of the syringes of oil, then put him back to bed. An hour later he woke to a second grand mal seizure, so this time we gave him the Diastat (rectal Valium) intended to stop clusters of seizures, then I crawled in next to him. His breathing was somewhat labored, so I hoped he hadn’t aspirated in the night.
In the next several hours Calvin suffered a few more events, some heart-racing, semiconscious partial seizures, which twist his gut into audible knots and sometimes cause him to wretch. At 2:45 a.m. I gave him the second syringe of cannabis oil in small, careful squirts.
It’s nine a.m. and he’s still in bed, still seeming to be having partial seizures, though they are difficult to discern in a boy like Calvin who also seems to be sick. I’m asking myself, is he sick? Is it the reduced CBD? is it the benzodiazepine withdrawal? Is he outgrowing his other med? Is it puberty causing this uptick in nighttime seizures of late? Regrettably, there is no way to know.
Lauren called this morning to see how Calvin was doing. Natasha is walking Nellie with her little boy Adam, though it’s only twenty-six degrees outside. I’m sitting here writing and reading about benzodiazepine withdrawal, having come across this important link. I told Lauren I didn’t know if I was doing the right thing by taking Calvin off of the benzodiazepine (clobazam), worrying that doing it might impair him, indeed kill him, since withdrawal can sometimes cause a rash of seizures that no medication can stop.
I’m worried sick about losing Calvin to uncontrolled seizures, catatonia, coma, psychosis, pneumonia. He’s an impossibly difficult boy to raise, and sometimes I feel the urge to run away. At others, I can barely stand to imagine what life would be like without him here to hold and squeeze and kiss.
Just after six, I kissed my son and my husband goodbye and patted Nellie on the head, then swung by Lauren’s to pick her up for a bite to eat and a drink. We saddled up to the bar, sipped our cocktails and had just begun eating when my phone vibrated in my pocket. As always, I jumped, and probably said fuck, because my cell phone is reserved solely for urgent calls about Calvin.
I answered the phone and Michael told me that Calvin had had a grand mal seizure, shorter than most, but a seizure nonetheless. It was only seven p.m., an unusual time for Calvin to seize, but when I remembered the recent time change, it made more sense. I hung up and said I’d be home soon as I could, but after thinking about it further, I called him back and asked him to give Calvin an extra dose of THCA oil if he could.
When I returned home all was calm, Michael perched in the dark on Calvin’s changing table, the glow of his ipad illuminating his face. Our boy seemed calm, secure and fast asleep, so, after readying two extra doses of THCA oil, I got into our bed not wanting to disturb our boy.
At 10:45 p.m. I heard Calvin wake up, so I changed his wet diaper and gave him one of the syringes of oil, then put him back to bed. An hour later he woke to a second grand mal seizure, so this time we gave him the Diastat (rectal Valium) intended to stop clusters of seizures, then I crawled in next to him. His breathing was somewhat labored, so I hoped he hadn’t aspirated in the night.
In the next several hours Calvin suffered a few more events, some heart-racing, semiconscious partial seizures, which twist his gut into audible knots and sometimes cause him to wretch. At 2:45 a.m. I gave him the second syringe of cannabis oil in small, careful squirts.
It’s nine a.m. and he’s still in bed, still seeming to be having partial seizures, though they are difficult to discern in a boy like Calvin who also seems to be sick. I’m asking myself, is he sick? Is it the reduced CBD? is it the benzodiazepine withdrawal? Is he outgrowing his other med? Is it puberty causing this uptick in nighttime seizures of late? Regrettably, there is no way to know.
Lauren called this morning to see how Calvin was doing. Natasha is walking Nellie with her little boy Adam, though it’s only twenty-six degrees outside. I’m sitting here writing and reading about benzodiazepine withdrawal, having come across this important link. I told Lauren I didn’t know if I was doing the right thing by taking Calvin off of the benzodiazepine (clobazam), worrying that doing it might impair him, indeed kill him, since withdrawal can sometimes cause a rash of seizures that no medication can stop.
I’m worried sick about losing Calvin to uncontrolled seizures, catatonia, coma, psychosis, pneumonia. He’s an impossibly difficult boy to raise, and sometimes I feel the urge to run away. At others, I can barely stand to imagine what life would be like without him here to hold and squeeze and kiss.
This archived video of one of Calvin's typical grand mal seizures might be difficult for some people to watch, but critical for understanding the plight of epilepsy. If you cannot view this video, click here to watch it on You Tube.
My heart goes out to you and your little boy!
ReplyDeleteSweet boy, dear parents. I wish you all well. The thing is...was he having fewer seizures on the benzo before the cannabis? Is he having more seizures now with the reduced benzo and the cannabis?
ReplyDeleteYou are right that there is no way of telling what is causing the seizures, breakthrough from the cannabis, weaning of the benzo, imbalance of the two agents...who is to know. You and Calvin are pioneers in this, and I hope that some discoveries are made without harm to your sweet boy. That he is having the seizures, one can say that he'd have had them and more, had this path not been taken.
unfortunately he is having more seizures. at first, during the withdrawal and with cannabis, they were about the same number and only at night. but the further we decrease the benzo the more he seems to have. it is hard to compare, however, because once he is off of the benzos his seizures might plateau. hard to know. it just doesn't seem we can sustain a drug which calvin habituates to. he was reaching toxic levels of the drug just to keep his seizures under control. that is no way to live.
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