When it comes to treating intractable epilepsy nothing is cut-and-dried. Calvin, who is just six and only 38 pounds, has already tried seven anti-convulsant medications—as many as four at once. Only one of those drugs, Clobazam, a benzodiazepine related to Valium, has had any obvious benefit. But in October Calvin’s seizures—which each last three agonizing minutes—increased, so we were faced with a difficult decision yet again: Risk maintaining the status quo with continued, regular seizures or risk increasing the drug and its side effects. Either way Calvin loses.

Like all seizure medicines Clobazam is a cognitive depressant, and while this particular medicine has impacted Calvin’s seizures it can adversely affect language, learning, concentration and memory. It can cause poor coordination, sleep apnea, restlessness and other long-term cognitive and behavioral trouble including addiction. So while the drug might reduce his seizures it likely also robs him further of chances for development. As it is, Calvin’s development has very nearly come to a plateau since he was diagnosed with epilepsy over four years ago.

After much deliberation we opted to increase Calvin’s medicine with the hope that his seizures will stop as a result. With any luck a reprieve will allow his brain to heal which in turn might help his development. Without a cure, though, our precious boy will likely need to remain on risky drug treatment and may never realize his full potential. What is cut-and-dried is that we need a cure. Without it we all lose.

photo by Michael Kolster

1 comment:

  1. It's hard. A dilemma.

    How much calculated risk do you take?

    How do you decide whether to go with a new treatment that will bring with it myriad side effects but "possibly" decrease seizures, or to lay off for a while, allowing a possible increase in Calvin's natural inner strength, which the medications may hamper? Very difficult.

    Stay in the game, Christy. It's clear you are playing to win this for Calvin. Cheers!