This morning, I narrowly escaped a bruised or broken nose, a black eye and a fat lip. After Calvin's second grand mal in less than twelve hours he began acting as if he were going to launch into one of his frightening night terror episodes. These events are difficult to diagnose; I don't know if they are migraines or withdrawals or panic attacks or hallucinations or some kind of seizure. Perhaps they are a combination of all of the above. Thankfully, the acetaminophen suppository seemed to help, but not before he roughed me up and head butted me several times.
Last night was the second time this month Calvin suffered a grand mal only an hour after his bedtime meds and after falling asleep—a rare time for him to have a fit, though not unheard of—and the second time he had seizures on consecutive days totaling five grand mals already this month. I'm cautiously optimistic, however, about what it might mean that we have not seen any partial complex seizures in over four weeks. If we can virtually eliminate these, Calvin will, in any given month, have less than half the number of his average of monthly seizures. Still, the grand mals possess him, and I feel we are running out of viable, reasonable options for their suppression.
Often, I tell folks that if it weren't for Calvin's epilepsy—the dread, the scores of seizures, their side effects and dangers, the drugs he has to take which I have to order, dispense and give, their side effects, the cannabis oil I make, dose and administer, the sleepless nights due to seizures and drug side effects, the cumulative toll from stress—taking care of him would be a piece of cake. Seriously, without epilepsy, Calvin's non-verbal, incontinent, legally blind, uncoordinated fourteen-year-old self would be, in comparison, incredibly easy for me, a veritable walk in the park. Without epilepsy and its drug treatments, Calvin would likely walk better and be worlds ahead developmentally. Hell, he might even be uttering words and stringing some of them together. He'd likely sleep far better and not suffer bouts of mania, withdrawal, panic or the night terror thingies. I wager his bowels would work without having to "supp" him every day. Maybe he'd even be potty trained. A kid like that I could no doubt take care of blindfolded with one hand tied behind my back. No joke. If that kind of kid—the one I just described—sounds like a lot to handle, then perhaps you get some sense of how debilitating, limiting, harrowing, stressful and exhausting epilepsy can be for a child and their family.
So, today, while it is gorgeous and mild outside, I am walking around the house like a zombie. I am not on a cake walk. Right now Calvin is in his bed with a case of the hiccups. He's got a low-grade fever, doesn't want to eat or drink, is quite agitated and has several other harbingers of another seizure on the horizon. In other words, I am not convinced he is out of the woods yet. But still no sign of the partial seizures which usually appear in the wake of grand mals. That is good.
What is also good is that I don't have a black eye, a fat lip or broken nose ... yet. But I wish today with all my might that Calvin and I were taking a walk in the park.
Last night was the second time this month Calvin suffered a grand mal only an hour after his bedtime meds and after falling asleep—a rare time for him to have a fit, though not unheard of—and the second time he had seizures on consecutive days totaling five grand mals already this month. I'm cautiously optimistic, however, about what it might mean that we have not seen any partial complex seizures in over four weeks. If we can virtually eliminate these, Calvin will, in any given month, have less than half the number of his average of monthly seizures. Still, the grand mals possess him, and I feel we are running out of viable, reasonable options for their suppression.
Often, I tell folks that if it weren't for Calvin's epilepsy—the dread, the scores of seizures, their side effects and dangers, the drugs he has to take which I have to order, dispense and give, their side effects, the cannabis oil I make, dose and administer, the sleepless nights due to seizures and drug side effects, the cumulative toll from stress—taking care of him would be a piece of cake. Seriously, without epilepsy, Calvin's non-verbal, incontinent, legally blind, uncoordinated fourteen-year-old self would be, in comparison, incredibly easy for me, a veritable walk in the park. Without epilepsy and its drug treatments, Calvin would likely walk better and be worlds ahead developmentally. Hell, he might even be uttering words and stringing some of them together. He'd likely sleep far better and not suffer bouts of mania, withdrawal, panic or the night terror thingies. I wager his bowels would work without having to "supp" him every day. Maybe he'd even be potty trained. A kid like that I could no doubt take care of blindfolded with one hand tied behind my back. No joke. If that kind of kid—the one I just described—sounds like a lot to handle, then perhaps you get some sense of how debilitating, limiting, harrowing, stressful and exhausting epilepsy can be for a child and their family.
So, today, while it is gorgeous and mild outside, I am walking around the house like a zombie. I am not on a cake walk. Right now Calvin is in his bed with a case of the hiccups. He's got a low-grade fever, doesn't want to eat or drink, is quite agitated and has several other harbingers of another seizure on the horizon. In other words, I am not convinced he is out of the woods yet. But still no sign of the partial seizures which usually appear in the wake of grand mals. That is good.
What is also good is that I don't have a black eye, a fat lip or broken nose ... yet. But I wish today with all my might that Calvin and I were taking a walk in the park.
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| Photo by Michael Kolster |
I wish you and Calvin were taking a walk in the park as well Christy, instead of having to deal with the epilepsy beast.
ReplyDeleteA beautiful post, Christy.
ReplyDelete