Lately I've been stir crazy, perhaps a case of cabin fever having spent most of this summer plus the last decade plodding along behind my son in a life-radius too small to serve most anyone well.
There was a time when both Calvin and I were relatively calm: me before becoming a mother, Calvin when he was a tot. Though for years he cried from colic, there were long stretches of time when he lay quietly next to us in bed, on the couch or on a blanket or towel spread out on the grass. On hot days, he'd recline in a baby bathtub outdoors, cross one foot over his other knee, fold his hands behind his head and just chill. He was tranquil. His body could stay still. And even though our life-radius was limited, there were placid moments within it.
All of that changed after he began taking the drugs meant to combat his seizures, including benzodiazepines, the first of which, Klonopin, was prescribed by Dr. Rx when Calvin was just three years old. The drugs took a toll on our boy. I lament having learned too late that the Klonopin was unnecessary—ostensibly prescribed as a bridge drug while he titrated up on Lamictal. Zonegran, which had been simultaneously prescribed at a therapeutic level, could and should have served the same purpose. Instead, one drug became three.
For years it appeared to me Calvin might be on the verge of walking by himself, but when he began the ketogenic diet at the age of four, what little balance, coordination and strength he had fell to pieces. Subsequent blood work revealed an increase in his antiepileptic drug levels; the diet must have been causing his body to metabolize the drugs differently. To improve his balance and muscle tone, we were counciled by Calvin's new neurologist to take him off of the Klonopin—the once-temporary bridge drug having remained in place for well over a year despite my previous pleas to discontinue it. Within days of initiating what I understand now was a swift elimination, Calvin's seizures doubled, and we were advised to add a fourth antiepileptic drug while he completed the benzo wean. Not knowing what we know now, we added another benzodiazepine, clobazam, aka Onfi. We were told it was thought to be less addictive and less of a muscle relaxant than the Klonopin, and that it might help ease his Klonopin withdrawal. It did, but because of habituation, which is a hallmark of benzodiazepines, Calvin eventually advanced to a very high dose of the addictive drug, and soon he was no longer capable of sitting still, sitting on our laps to read his favorite book, lying next to us in bed. His body became a mass of flailing nerves.
This past Februray, Calvin had his last dose of clobazam (insert secular amen here); the wean took us nearly four years. But his restlessness, though improved, for the most part has remained. He has a hard time sitting in a chair without being strapped in. He sits on our laps for mere seconds, minutes at best. He snaps and rubs his fingers incessantly. He doesn't attend to toys for more than a few moments. He paces around the house, constantly on the move from table to chair to jumper to shutters to stairs to couch to door and back again. I wonder if he will ever calm enough to learn to feed himself with a spoon.
But on a good note, it has been thirteen days since Calvin's last grand mal, nearly twice as long as his average span between convulsive fits of late. In that time we have witnessed only two partial complex seizures—one this morning—and he is, for the most part, sleeping very well. I'm tempted to owe the long span between grand mals to the new CBD oil from the good folks at Palmetto Harmony, but we need to give it more time before we can feel more certain. In the meantime I'll remain in my tiny life-radius, antsy and anxious to find an elixir that works to rid my boy of his fits, hoping for some newfound calm.
There was a time when both Calvin and I were relatively calm: me before becoming a mother, Calvin when he was a tot. Though for years he cried from colic, there were long stretches of time when he lay quietly next to us in bed, on the couch or on a blanket or towel spread out on the grass. On hot days, he'd recline in a baby bathtub outdoors, cross one foot over his other knee, fold his hands behind his head and just chill. He was tranquil. His body could stay still. And even though our life-radius was limited, there were placid moments within it.
All of that changed after he began taking the drugs meant to combat his seizures, including benzodiazepines, the first of which, Klonopin, was prescribed by Dr. Rx when Calvin was just three years old. The drugs took a toll on our boy. I lament having learned too late that the Klonopin was unnecessary—ostensibly prescribed as a bridge drug while he titrated up on Lamictal. Zonegran, which had been simultaneously prescribed at a therapeutic level, could and should have served the same purpose. Instead, one drug became three.
For years it appeared to me Calvin might be on the verge of walking by himself, but when he began the ketogenic diet at the age of four, what little balance, coordination and strength he had fell to pieces. Subsequent blood work revealed an increase in his antiepileptic drug levels; the diet must have been causing his body to metabolize the drugs differently. To improve his balance and muscle tone, we were counciled by Calvin's new neurologist to take him off of the Klonopin—the once-temporary bridge drug having remained in place for well over a year despite my previous pleas to discontinue it. Within days of initiating what I understand now was a swift elimination, Calvin's seizures doubled, and we were advised to add a fourth antiepileptic drug while he completed the benzo wean. Not knowing what we know now, we added another benzodiazepine, clobazam, aka Onfi. We were told it was thought to be less addictive and less of a muscle relaxant than the Klonopin, and that it might help ease his Klonopin withdrawal. It did, but because of habituation, which is a hallmark of benzodiazepines, Calvin eventually advanced to a very high dose of the addictive drug, and soon he was no longer capable of sitting still, sitting on our laps to read his favorite book, lying next to us in bed. His body became a mass of flailing nerves.
This past Februray, Calvin had his last dose of clobazam (insert secular amen here); the wean took us nearly four years. But his restlessness, though improved, for the most part has remained. He has a hard time sitting in a chair without being strapped in. He sits on our laps for mere seconds, minutes at best. He snaps and rubs his fingers incessantly. He doesn't attend to toys for more than a few moments. He paces around the house, constantly on the move from table to chair to jumper to shutters to stairs to couch to door and back again. I wonder if he will ever calm enough to learn to feed himself with a spoon.
But on a good note, it has been thirteen days since Calvin's last grand mal, nearly twice as long as his average span between convulsive fits of late. In that time we have witnessed only two partial complex seizures—one this morning—and he is, for the most part, sleeping very well. I'm tempted to owe the long span between grand mals to the new CBD oil from the good folks at Palmetto Harmony, but we need to give it more time before we can feel more certain. In the meantime I'll remain in my tiny life-radius, antsy and anxious to find an elixir that works to rid my boy of his fits, hoping for some newfound calm.
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| Michael and Calvin, July 2006 before his first apparent seizure, before the drugs. |
Fingers crossed.
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