change on a dime

Some things can change on a dime: traffic lights, the stock market, the look on someone’s face, the weather in Maine, my mood.

Today is Calvin’s forty-third day without a seizure (assuming I didn’t sleep through any.) The last time he went this long between seizures was four and a half years ago. But then, without warning, on day forty-four Calvin had eight complex partial seizures and we had to give him emergency Valium—twice—to stop the cluster from rolling into status epilepticus, a dangerous, sometimes lethal, prolonged seizure. We were left temporarily increasing one of Calvin’s three seizure meds and permanently increasing another. After that he had as few as four and as many as twenty-three seizures every month over the course of the following three years. In an effort to snuff out the seizures we constantly increased his doses, albeit unsuccessfully—until we were finally forced to completely change his anticonvulsant medication regimen. This change, which began with the initiation of one new drug, and the gradual elimination of the three older ones, reduced his seizures to a few every month. But over time, the number of his seizures began to increase, so that we had to add a second drug—then a third—to his already powerful drug cocktail.

So, although it might seem reasonable—because of this forty-three day stint—to assume that we can breathe a sigh of relief, relax our shoulders a bit and put our fears on the back burner, we cannot. For over five and a half years the seizures have eventually found a way around the drugs, burst through the barrier, like a crack in a dam, flooding Calvin’s brain with electricity gone haywire.

So, when I hear the cell phone ring while Calvin is at school, I still flinch. When I see him slumped in his jumper I run to his side. When I hear him shriek in the tub my heart leaps out of my chest. When he laughs hysterically I feel that sickeningly familiar suspicion that a seizure is on its way.

A friend I grew up with has a nine or ten year old daughter, Olivia, who has epilepsy, and had uncontrolled seizures for years. This past summer Olivia began the Ketogenic diet, a rigorous, exacting high-fat diet aimed at curbing—or stopping—seizures. Calvin tried it for two years without success. Olivia was on it for just a few days before her seizures completely stopped. Since June, Olivia had been seizure free and had begun reducing her anticonvulsant medications, even discontinuing them for a few days. Shortly thereafter, she had thirty atonic “drop” seizures in one day. Atonic seizures, though brief, are dangerous, even life threatening, as the seizure causes the total loss of muscle control and the victim abruptly drops to the ground, often breaking their nose or teeth or causing serious head injuries that can prove to be fatal. Olivia had to reinstate her drug regimen.

So, like I tell people when I meet them, epilepsy is not a benign disorder where you take a pill and everything is okay. It’s not. Like the weather in Maine, it can change on a dime.

Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It’s as easy as pushing a button.

One of Calvin's electroencephalograms - photo by Michael Kolster

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