It's been challenging lately to find time to sit down and write, in great part due to Calvin's seizures. So far this month Calvin has had nine days with seizures, translating into missing quite a few days of school due to the drowsiness and fatigue that often come in the wake of grand mals. Sometimes I can send him to school the day he awakens to a seizure, but other times he catnaps—on my lap much of the time—all day long and into the next.
When Calvin does go to school (like today) after being home for several days in a row, I'm faced with balancing my need to get outside and move my body, with my desire to write, with my need to do paperwork, grocery shopping, yard work and chores.
Today, since it's sunny, I spent a couple of hours raking leaves in the back yard. And though I don't love raking, I do get some exercise and the result is most satisfying—the revealed green grass contrasting with copper pine needles and the brown bark mulch beds. The low sun casts lovely shadows across autumn's purple-, bronze- and red-leaved rhododendrons and azaleas. Amid so many seizures, I still have much to be thankful for.
Nonetheless, if nine days worth of seizures so far this month seems like a lot, it is. But taken into context, it is, for Calvin, kind of par for the course since 2015, the year after we began weaning him from his benzodiazepine, Onfi, aka clobazam. His breakdown looks like this:
2015: 51 grand mals and 70+ focals = 121+ seizures (weaning Onfi)
2016: 51 grand mals and 105 focals = 156 (weaning Onfi)
2017: 58 grand mals and 95 focals = 153 (weaned Onfi in February)
2018: 59 grand mals and 78 focals = 137
With one month to go, I'm predicting Calvin will end this year with 68 grand mals, though probably only 66 focals, for a total of 134. It's important to note that this number was attained on zero benzodiazepine, far less Keppra, a recent growth spurt and raging hormones.
So though Calvin is having slightly more grand mals, he's having fewer focal seizures while seeming to be happier, calmer, sleeping better and being more compliant. But by saying over one-hundred seizures a year is par for the course is by no means saying it is acceptable or that I've resigned myself to that number. I haven't. I just need to find the right treatment and balance for Calvin and for us, one that limits his seizures and suffering from side effects.
So today I made a call into Calvin's neurologist to speak with him further about starting Calvin on Epidiolex, a plant-based pharmaceutical version of CBD (cannabidiol), one of cannabis' medicinal constituents. A friend's daughter is doing quite well on it, and I'm closely following an Epidiolex Facebook parent group, noting the drug's side effects and most effective dosing, which is less than what most prescribing doctors seem to think. My hope is that since Epidiolex is cannabis-plant based, maybe it could work better for Calvin than other, traditional pharmaceuticals have in the past.
And for those of you wondering, Calvin still takes Palmetto Harmony CBD oil plus a THCA oil that I make. I've been tinkering with the doses of each for months since Calvin went forty days without a grand mal after first starting the CBD oil eighteen months ago. Regrettably, we've yet to repeat that kind of seizure control since. I imagine it's all about finding the right balance. Sadly, I haven't yet.
When Calvin does go to school (like today) after being home for several days in a row, I'm faced with balancing my need to get outside and move my body, with my desire to write, with my need to do paperwork, grocery shopping, yard work and chores.
Today, since it's sunny, I spent a couple of hours raking leaves in the back yard. And though I don't love raking, I do get some exercise and the result is most satisfying—the revealed green grass contrasting with copper pine needles and the brown bark mulch beds. The low sun casts lovely shadows across autumn's purple-, bronze- and red-leaved rhododendrons and azaleas. Amid so many seizures, I still have much to be thankful for.
Nonetheless, if nine days worth of seizures so far this month seems like a lot, it is. But taken into context, it is, for Calvin, kind of par for the course since 2015, the year after we began weaning him from his benzodiazepine, Onfi, aka clobazam. His breakdown looks like this:
2015: 51 grand mals and 70+ focals = 121+ seizures (weaning Onfi)
2016: 51 grand mals and 105 focals = 156 (weaning Onfi)
2017: 58 grand mals and 95 focals = 153 (weaned Onfi in February)
2018: 59 grand mals and 78 focals = 137
With one month to go, I'm predicting Calvin will end this year with 68 grand mals, though probably only 66 focals, for a total of 134. It's important to note that this number was attained on zero benzodiazepine, far less Keppra, a recent growth spurt and raging hormones.
So though Calvin is having slightly more grand mals, he's having fewer focal seizures while seeming to be happier, calmer, sleeping better and being more compliant. But by saying over one-hundred seizures a year is par for the course is by no means saying it is acceptable or that I've resigned myself to that number. I haven't. I just need to find the right treatment and balance for Calvin and for us, one that limits his seizures and suffering from side effects.
So today I made a call into Calvin's neurologist to speak with him further about starting Calvin on Epidiolex, a plant-based pharmaceutical version of CBD (cannabidiol), one of cannabis' medicinal constituents. A friend's daughter is doing quite well on it, and I'm closely following an Epidiolex Facebook parent group, noting the drug's side effects and most effective dosing, which is less than what most prescribing doctors seem to think. My hope is that since Epidiolex is cannabis-plant based, maybe it could work better for Calvin than other, traditional pharmaceuticals have in the past.
And for those of you wondering, Calvin still takes Palmetto Harmony CBD oil plus a THCA oil that I make. I've been tinkering with the doses of each for months since Calvin went forty days without a grand mal after first starting the CBD oil eighteen months ago. Regrettably, we've yet to repeat that kind of seizure control since. I imagine it's all about finding the right balance. Sadly, I haven't yet.
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| Calvin catnapping last Friday after I picked him up from school. |
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