ominous storm

It’s been a long time since Calvin had seizures two days in a row, but until they are fully controlled, it’s bound to happen. Well, it just did.

The most common kind of seizure Calvin has now is tonic-clonic, or grand mal, a convulsive fit that involves the entire brain, halting his breathing for much of the two to three minute duration. Another kind that is more insidious is usually recognized only by me. On his pallid face develops a patchy flush, his body goes slack, his indigo eyes unresponsive and vacant. Yesterday he was dealt one of each. Today, even though we recently increased one of Calvin's drugs, the stealthy seizures—the ones that, if they didn't stop, used to land us in the emergency room—keep creeping over him like an ominous rolling storm.

In an attempt to arrest Calvin’s seizures we continue to inch up and up on antiepileptic drugs whose mechanism of action even pharmaceutical companies don’t fully comprehend. We only know that the drugs slow brain activity, which translates into slower development. With each dose increase Calvin’s balance, coordination and cognitive abilities slide. His development has nearly frozen since he was diagnosed with epilepsy five years ago. At seven years of age he’s still pretty much a big baby, and even then, many infants surpass his skill level.

At this point antiepileptic drugs are a necessary evil for Calvin. He’s not a surgical candidate, he’s too young for the vagus nerve stimulator—a kind of pacemaker for the brain—dietary therapy hasn’t worked, he hasn’t grown out of the seizures and, most importantly, we don’t have a cure. And considering the lack of public awareness and funding, we’re a long way from finding one.

Epilepsy is evil. It makes me angry. It ushers nausea. It makes me want to scream. It reduces me to tears. It's relentless. 

Please share Calvin’s story with others. Help bring us one step closer to a cure, one story at a time.

photo by Michael Kolster

No comments:

Post a Comment