Today is day fourteen—two weeks since Calvin’s last perceived seizure—his longest seizure-free stint since July. It is possible that we could’ve slept through one—his unmistakable seizures now occurring exclusively at night—though I generally sleep lightly with the baby monitor alerting me from the bedstand near my head.
I’d felt a seizure approaching a week ago—seen Calvin’s hysteria, lunacy, mania or whatever you want to call it, seen his finger snapping, endured his incessant screeching, felt his intensity and the pounding of his heart in his chest—so I did something different: I prophylactically increased his CBD (cannabidiol) cannabis oil at bedtime that night. The seizure never materialized.
At a slightly higher dose of CBD, albeit still a tiny one at only 4 milligrams per day or approximately 1.7 mg per kilogram of his weight, Calvin has been sleeping more soundly, waking up slightly later, walking somewhat better, finger-snapping less and smiling more. My hope is that if he can go one month seizure free I’ll consider reinstating his benzodiazepine wean; we are committed to getting him off of the clobazam even if we have to suffer through some extra withdrawal seizures and other temporary symptoms.
From what I’ve read, other children with intractable epilepsy are taking as much as sixty times the amount of CBD that Calvin is on. We bucked the Colorado trend of giving large doses of CBD and are starting low and slow with an oil that has a mere 4 mg of CBD per milliliter compared with others that are between 50 and 200 mgs of CBD per milliliter of oil. Even the children taking the pharmaceutical form of CBD, a drug in trial called Epidiolex, are taking as much as 10 to 20 mgs per kilogram of their weight. Granted, Calvin has not suffered a life-threatening seizure or series of seizures for years while many of these kids have hundreds of seizures every month, every week—some every day—so we have the relative luxury of taking it slow without worrying too much that he might expire.
Today also marks day one-hundred-twenty-three—Calvin has gone over four months without a daytime tonic-clonic (grand mal) seizure and has had less than a handful of brief partial seizures in that time. I attribute that daytime seizure freedom to the months of therapy on a homemade THCA cannabis oil which, since I’ve been giving it to Calvin since February, has also allowed us to safely wean Calvin off of over half of his benzodiazepine without a rash of additional seizures.
In a nutshell, I think the cannabis is effing working. Calvin is going as long, if not longer, between seizures as he was a year ago when he was taking twice as much benzodiazepine. For the most part, he is walking safely and independently without use of a harness. He is beginning to use a spoon again to feed himself, though he’s got a long, long way to go before he is proficient. He’ll be turning eleven in a month’s time, and even though he isn’t playing hockey or reading books or walking Nellie or having sleepovers or drawing pictures or building snowmen or playing an instrument or writing poems like his peers are doing, he’s alive and mostly happy. We see him progressing by degrees. And his smile, his gaze and his countenance seem to be brightening with each passing day, like the sun in the winter sky headed for spring.
I’d felt a seizure approaching a week ago—seen Calvin’s hysteria, lunacy, mania or whatever you want to call it, seen his finger snapping, endured his incessant screeching, felt his intensity and the pounding of his heart in his chest—so I did something different: I prophylactically increased his CBD (cannabidiol) cannabis oil at bedtime that night. The seizure never materialized.
At a slightly higher dose of CBD, albeit still a tiny one at only 4 milligrams per day or approximately 1.7 mg per kilogram of his weight, Calvin has been sleeping more soundly, waking up slightly later, walking somewhat better, finger-snapping less and smiling more. My hope is that if he can go one month seizure free I’ll consider reinstating his benzodiazepine wean; we are committed to getting him off of the clobazam even if we have to suffer through some extra withdrawal seizures and other temporary symptoms.
From what I’ve read, other children with intractable epilepsy are taking as much as sixty times the amount of CBD that Calvin is on. We bucked the Colorado trend of giving large doses of CBD and are starting low and slow with an oil that has a mere 4 mg of CBD per milliliter compared with others that are between 50 and 200 mgs of CBD per milliliter of oil. Even the children taking the pharmaceutical form of CBD, a drug in trial called Epidiolex, are taking as much as 10 to 20 mgs per kilogram of their weight. Granted, Calvin has not suffered a life-threatening seizure or series of seizures for years while many of these kids have hundreds of seizures every month, every week—some every day—so we have the relative luxury of taking it slow without worrying too much that he might expire.
Today also marks day one-hundred-twenty-three—Calvin has gone over four months without a daytime tonic-clonic (grand mal) seizure and has had less than a handful of brief partial seizures in that time. I attribute that daytime seizure freedom to the months of therapy on a homemade THCA cannabis oil which, since I’ve been giving it to Calvin since February, has also allowed us to safely wean Calvin off of over half of his benzodiazepine without a rash of additional seizures.
In a nutshell, I think the cannabis is effing working. Calvin is going as long, if not longer, between seizures as he was a year ago when he was taking twice as much benzodiazepine. For the most part, he is walking safely and independently without use of a harness. He is beginning to use a spoon again to feed himself, though he’s got a long, long way to go before he is proficient. He’ll be turning eleven in a month’s time, and even though he isn’t playing hockey or reading books or walking Nellie or having sleepovers or drawing pictures or building snowmen or playing an instrument or writing poems like his peers are doing, he’s alive and mostly happy. We see him progressing by degrees. And his smile, his gaze and his countenance seem to be brightening with each passing day, like the sun in the winter sky headed for spring.
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| Calvin and his former nurse, Barbara |
I love this.
ReplyDeleteGo Calvin!
ReplyDeleteOutrageously awesome!
ReplyDeleteI'm so glad.
ReplyDelete