The kid is often psychotic. Batshit crazy. Bonkers. Virtually impossible. The other night was a terrible one. Calvin woke before midnight and never went back to sleep again. He spent hours tossing and turning, head-banging, wall-slapping and making all sorts of other annoying and anxiety-provoking sounds. He got tangled in his bed pad and covers. He got cold from his wet, drooly thermal. He soaked two diapers. But he wasn't seizing. He didn't appear to be in great pain. And he didn't seem all together panicky—no racing heart or clammy hands. But still, he was amped up and likely feeling miserable.

His head-shaking, grousing, and head-rubbing made me wonder if he might be experiencing side effects from the new seizure medication, Xcopri. But when I researched the drug again, there is virtually no mention of psychiatric effects beyond a low incidence of irritability. So then, I wondered if his mania might be due to the extra cannabis I'd given him, but I quickly dismissed that, having not really seen that effect before. I wondered if he might have a headache (headaches hurt, but often aren't bad enough to make one cry) so I gave him acetaminophen and, later, ibuprofen. Lastly, I wondered about the Keppra, which is notorious for its behavioral side effects. I got a sick feeling in my stomach thinking about all the what ifs. What if things hadn't gone so wrong to begin with? What if Calvin had never developed epilepsy? What if he had never been given benzodiazepines? What if he had never taken any anti-seizure drugs? What if he had never been born? Our poor boy suffers so senselessly; there's no reason for it.

Keppra's list of behavioral and neurological side effects is long: aggression, agitation, anger, anxiety, apathy, depersonalization, depression, emotional lability (mood swings), hostility, hyperkinesias, irritability, nervousness, neurosis, and personality disorder, for starters. I often describe my son as "unreachable." Not infrequently, he has abrupt outbursts of laughing and shrieking. He can never sit still. To complicate matters further, like benzodiazepines, apparently Keppra's side effects can be caused by its use, its dose reduction or its discontinuation. Calvin has been on Keppra for years and, until more recently, on a very high dose. I say to myself, we're fucked, wondering—if he's lucky enough to come off of the drug—if the side effects will be permanent, meaning he'll never, ever be a calm and happy child who feels good. Can you imagine being that person or the parent of a child who feels like that? It's called hell on earth.

I think back to when Calvin was first prescribed Keppra. He was only two and had been newly diagnosed with epilepsy. I remember how amped up he was then, often hyperventilating as if extremely excited. Years later, after ten failed anti-seizure medications and dwindling options for a new one that might work (when the first drug fails to control seizures, the chance a subsequent one will work shrinks to less than five percent and decreases with each successive failed drug) we decided to try Keppra again (a friend's daughter had retried it, and the second time around it worked for her, albeit with the help of two others.) I try to recall if that is when Calvin's agitation and mania began, his mood swings and restlessness. I had always blamed the benzodiazepines. Maybe I've been blaming the wrong drugs all along. Or maybe (probably) they're all culprits. In any case, they've made my kid psychotic, and I fear he'll never be the same again, fear his brain has been forever changed, fear he will be plagued by this miserable restlessness in perpetuity.

Inside this two-and-a-half bedroom home on this small patch of land, there's so much suffering—seizures, sleep deprivation, headaches, anxiety, anger, resentment, tedium, frustration, despair, envy, fatigue, panic, psychosis. Still, I try to hold on to hope. Keep my head above water. Thankfully, I've become deft at that. Rather than sink, I watch from my writing desk as diaphanous clouds drift amid a cornflower blue sky. I see and hear the wind finger through the pines outside my window, see the tops of trees swaying in the breeze. I think of my good ole friends and the ones I've made more recently. I listen to orchestral music which often moves me to tears. I'm grateful for warmth, beauty, comfort, love, light, space, nourishment, seasons, family, friends, strangers, forgiveness and walks in the woods and on back roads. I'm even grateful for my sweet, adorable, affectionate, impossible psychotic child. After all, it's not his fault.

On one such day two years ago.

No comments:

Post a Comment