I don’t know how a body and mind can go sixteen days seizure free and then have four or five seizures in as many days.
Just when I think Calvin is going to have a decent month, he spirals into a torrent of fits. It’s how epilepsy rolls, and is why I am left not knowing what to do in terms of treatment. I cling to hoping the “less is more” strategy can work—he’s on a moderate dose of just one pharmaceutical plus my homemade THCA cannabis oil—thinking that Calvin’s seizures will at some point begin to resolve. After all, he’s had half as many focal seizures this year as last, and a fraction compared with years past. His grand mals, however, continue to inch up, though only slightly more than in past years when they’ve hovered in the fifties and sixties.
Despite Calvin's ongoing seizures, I’m loath to try a new pharmaceutical because of the heinous side effects they all cause. I hate to put my sweet boy through the trials. Sometimes I wonder if the side effects are worse than the seizures themselves. Who knows? I have a hunch but I can't be certain. Most neurologists don't seem to know.
I’ve toyed with retrying the Palmetto Harmony CBD cannabis oil. Several years ago, Calvin went forty days without a grand mal on a small dose of it. It appeared, however, that when he got to higher doses, Calvin’s focal seizures increased, and he was never able to regain the same respite from grand mals. Eventually, we took him off of it and tried the plant-based pharmaceutical version of CBD, Epidiolex, which seemed to exacerbate both kinds of his seizures, though I can't know for certain.
Last night, on the heels of a full moon, a wicked storm whipped through, battering the house, downing limbs and cutting the power at seven p.m. Calvin slept right through until a grand mal at 5:30 this morning followed by a focal seizure two hours later. During the focal seizure he wasn’t breathing. In the dim light it was hard to tell if his lips might be turning blue. I gently pressed on his diaphragm several times thinking I could facilitate an exchange of air. Shortly thereafter, he came to, but not without giving me a scare.
I think about the early days when we called 9-1-1 so often, and about the multiple trips to the emergency room, the botched IVs, the forty-five minute seizure which we thought would take him, the unnecessary, harrowing and bloody intubation, the many transports to Maine Medical Center’s pediatric intensive care unit. Every time he seizes I fear the need to go to the hospital, especially during Covid.
Approaching noon, we still didn’t have power. All day the house was darkish, damp and chilly, at least until we were able to get a good strong fire going in the wood stove. Calvin eventually came out of his funk and rested most of the day, but I still fear more seizures tonight and/or tomorrow morning. The tempests haven't completely passed; I see the treetops sway and the heavy bows bob outside the window. I feel my son's fits in his heartbeat. I feel them like a chill in my bones.