Easing My Son Off His Seizure Meds

by ParentCo. November 10, 2017

Child Holding Balloons Standing in Front of Fantasy Storm Illustration

“There is no evidence on EEG to indicate abnormal activity or an active epilepsy. Assuming he has not had any seizures since I last saw him, we can proceed as planned to reduce the seizure medications,” so says our doctor, the expert.
Whenever I hear the phrase “abnormal activity,” it sends me back to the good old X-Files days with Scully M.D. muttering over “paranormal activity” as Mulder scrambles down into some huge alien footprint. It just sounds otherworldly.
To me, my son’s seizures have always seemed paranormal – a thing that inhabited his body and made him shiver and shake and drool and slump over like a Muppet off camera. So does this mean the thing, whatever it was that made his brain waves quiver, has left the building? It’s been three years since his last seizure, but also three years with the steadying medication coursing through his veins.
That’s 1,095 days of peace of mind.
Do we move forward? Do we cross that threshold?
It’s the pivotal point of any hero’s journey – the point of no return. Sam says, on the edge of the Shire, “If I take one more step, it will be the farthest away from home I’ve ever been.” Dorothy says, “Toto, I’ve a feeling we’re not in Kansas anymore,” and then she hops over the witch’s curling feet into a technicolor dreamland.
But here’s the thing. If we cross over, I don’t know what it’s going to look like on the other side. Each day, as I squirt less and less of the grape-flavored medicine into his mouth, I think, “Yippee!” and also, “Oh, crap.”
It’s a celebration of his changing self – the brain waves that are evening out a bit as he moves more solidly out of the shadow of those early days of trachs and g-tubes and oxygen machines and crazy high fevers that burned him from the inside out like a coal in the fire.
But what if this new place is really just that old place in disguise, the tree we will keep passing on the lifelong road trip, the seizure around the bend?
“What’s so wrong with a little medicinal buffer anyway?” I think, as the leaves outside turn orange and crimson and finally brown. I can feel winter coming and with it the colds and flus that settle in like a fog until April. Can we weather this weather without something to keep the sickness from turning febrile?
I want to believe it. I want to trust the doctors, the gatekeepers of this new place. But his blond hair is currently curling in the breeze, and he’s alert and rolling along in his wheelchair like a man in “Murderball”. I don’t want to risk that.
We can’t go back though, now that we’ve landed on the lowest dose the vial can hold before it turns to nothing. Hopefully, this road will lead to better things…over the rainbow and all that jazz. Or maybe it just leads home to a safe place that isn’t manufactured through medicine. I would like a steady reality.
Either way we’re going to try – me, the mothering sidekick, and him, the hero and son.



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