The other day Michael and I decided to reinstate Calvin's clobazam wean. We paused it in October to introduce a high CBD cannabis oil to his regimen. The CBD appears to be holding some promise in reducing Calvin's seizures since he recently went 21 days seizure-free, or so we think. That is more than twice as long as usual, of late.
Currently, Calvin is taking 14 mg of clobazam per day, compared with 32.5 mg a year ago—a ridiculously high dose for someone his age and size. A homemade THCA cannabis oil helped us to wean him off of over half of his clobazam over the course of several months. We are committed to getting our boy completely off of the benzodiazepine which, like other pharmaceutical anticonvulsants, we think has caused more harm than good when it comes to Calvin's development and behavior.
Had I been more aware of the adverse effects on Calvin's development and behavior, maybe I'd never have agreed to put Calvin on benzodiazepines in the first place. His first benzo, clonazepam (Klonopin), which he started when he was just three, was meant as a bridge drug to be used for only a few weeks while we increased another drug to a therapeutic level. Regrettably, he was on it for three years, and getting him off of it was a nightmare. His profuse withdrawal seizures were only suppressed by starting him on the drug's relative, clobazam, which he's been on for four-and-a-half years.
I had certainly done my research about the side effects of benzos, but desperate parents look for hope anywhere we can get it, and neurologists downplay the likelihood and seriousness of side effects in favor of the prospect of complete seizure freedom.
Below is the sorry truth about Onfi (clobazam) straight from the drug literature, which shows just a smattering of the drug's total adverse effects. I invite you to scroll. Click on the photos to enlarge.
Clobazam, you're goin' down.
Currently, Calvin is taking 14 mg of clobazam per day, compared with 32.5 mg a year ago—a ridiculously high dose for someone his age and size. A homemade THCA cannabis oil helped us to wean him off of over half of his clobazam over the course of several months. We are committed to getting our boy completely off of the benzodiazepine which, like other pharmaceutical anticonvulsants, we think has caused more harm than good when it comes to Calvin's development and behavior.
Had I been more aware of the adverse effects on Calvin's development and behavior, maybe I'd never have agreed to put Calvin on benzodiazepines in the first place. His first benzo, clonazepam (Klonopin), which he started when he was just three, was meant as a bridge drug to be used for only a few weeks while we increased another drug to a therapeutic level. Regrettably, he was on it for three years, and getting him off of it was a nightmare. His profuse withdrawal seizures were only suppressed by starting him on the drug's relative, clobazam, which he's been on for four-and-a-half years.
I had certainly done my research about the side effects of benzos, but desperate parents look for hope anywhere we can get it, and neurologists downplay the likelihood and seriousness of side effects in favor of the prospect of complete seizure freedom.
Below is the sorry truth about Onfi (clobazam) straight from the drug literature, which shows just a smattering of the drug's total adverse effects. I invite you to scroll. Click on the photos to enlarge.
Clobazam, you're goin' down.
Christy, I'm not sure if this applies to what you're doing, but I just thought you should see this in case it applied to you and you weren't aware of it...
ReplyDeletehttp://www.nytimes.com/2015/01/18/us/odd-byproduct-of-legal-marijuana-homes-blow-up.html?hp&action=click&pgtype=Homepage&module=second-column-region®ion=top-news&WT.nav=top-news&_r=0
i've not read the article yet but i imagine it is discussing the use of butane and heat, neither of which i use to make my thca oil. i've been long aware of this problem and it can be a hitch in states that want to ban extractions all together, which would be disastrous for our kids.
DeleteWe tried Katie on a drug called Seroquel to reduce her aggression. She had what the doctor called a paradoxical reaction. She began screaming, crying, licking her lips and blinking. It was frightening. We put her on that drug because she kept attacking me and others but I got the worst of it. We also did this without a psychiatrist because we couldn't find one who would treat a child with a mental disability and so had to use our family doctor. It was a fucking nightmare which ended when I walked into emergency for the second time in a week and told them I wanted to see a psychiatrist within 30 minutes or I would be abandoning my daughter there. Sadly, that same afternoon a distraught father killed himself and his autistic son. We got to see a psychiatrist.
ReplyDeleteWe tried our best. You put him on the drug because you were trying your best.
dear lily, at first i thought that calvin suffered paradoxyical reactions to the benzos, such as insomnia instead of drowsiness, mania instead of stupor, etc. i soon learned these are ALL side effects of the drug. what would calvin have been without the use of them? i imagine he'd be a much different, more progressed boy.
DeleteBig sigh (as I mutter, Oh god, oh god, oh god.). I'm so glad that we're both going to be done with this hideous drug. In the meantime, I had the thought that how horrible would it be if Sophie or Calvin had suicidal ideation -- just musing how that would manifest or what variant since they can't "think" in the same way as a "normal" person might. But that's a tortured thought -- let's just get down to weaning. Nine months in, we're down from 45 mgs a day to 25 mg which is 44%!
ReplyDeletedear eee, i imagine that our children don't see the future. they appear to live in the moment. in doing so i doubt they have suicidal ideation, but i can imagine they can feel dark or sad at times, as we all do. we do our best to love them out of those moments.
Delete