I didn't really see it coming, at least not completely. Calvin had had a good day; though restless as usual, he was quiet, smiling at times, eating well. Michael and I had just finished dinner in front of a rolling fire. We had settled into our books (I'm in the middle of reading Jane Eyre) while FIP French radio played in the background. Just as I was luxuriating in a breadth of bluesy music and the soothing voice of the female DJ, I heard a screech come through the baby monitor. Though it had only been two days since Calvin's last grand mal, I knew he was seizing. I took the stairs by twos.
When the violent fit was over, our poor boy again had some trouble breathing. Whether excess fluids are obstructing his airway or his throat is constricted by aftershock spasms, it isn't clear. The good thing is he rarely turns blue during seizures anymore. Though it was only eight-thirty, I brushed my teeth and slid into the small space next to him in his safety bed. Thirty minutes later he woke quite agitated, his heart racing, his clammy fingers knitting in a panicked frenzy. This went on all night, every thirty minutes or so. Before midnight, I gave him extra THCA oil, but to no avail. I patted his back to help him burp, held him in my arms, stroked his face, kept him from careening out of bed. Somehow I managed to get a little shut eye before his second grand mal at half past three. Shortly thereafter, he settled for a bit, then woke again when he wet the bed. I scooped him up best I could using my legs and not my back to lift his eighty-five-plus pounds of mostly dead weight. His hands were frigid, but his face felt hot. His teeth were chattering, so I checked his temp, which was normal. I changed his diaper, and Michael, who had since woken, changed Calvin's pajamas and put him back to bed. I crawled back in next to him. Half an hour later he was up again, trying to bang on the wall and patting the side of his bed, so I gave him his morning seizure medicine early, hoping he'd settle. He didn't.
Much of my time awake I spent trying to think of another strategy to curb Calvin's seizures. I could increase his one pharmaceutical, Keppra. I could decrease the THCA since I've never really tried that; after all, high doses of any antiepileptic drug, even cannabis, can exacerbate seizures. I could try the Palmetto Harmony CBD oil again. I have an unopened bottle of it in the refrigerator; years ago, Calvin went forty days without any grand mals on just twenty milligrams of the product. However, when it quickly seemed to lose its effectiveness, we eliminated it from his regimen.
It's maddening, this epilepsy. Nothing I do seems to help quell his seizures. My boy suffers headaches, lethargy, restlessness, agitation, bitten and bloody cheeks and tongue, insomnia, panic attacks. My guess is he also experiences auditory and visual disturbances of some sort. I've little doubt that he's been ruined by the drugs which I believe are the root of his disquiet. For years he has not been able to sit still in our laps for longer than a couple of minutes unless he is sick or postictal. To be honest, the future looks bleak, which is not to say I've lost hope.
Today, Calvin is resting and recovering in bed. I'm perched on his changing table writing and wishing we were able to take a car ride. He hasn't had much to drink and nothing at all to eat. He's got dark circles under those gorgeous sand-and-sea eyes of his. There's every indication that this spate of seizures is not over. I hate to say it, but we may be in for another all-nighter.
|One such day last summer|
My heart aches for you. I hope things have settled down. Sending love and hoping for the best.