no end in sight

From last night:

I kept Calvin home from school again today because of a bad cold he’s had for over a month. Even so, he had a pretty good day. Turns out, though, it was too good to be true.

When Michael got home Calvin was in the bath. I told him that he had had such a good day—happy, good balance, great energy, super agile crawling up the stairs—so good that, “if it hadn’t been only two days since the last seizure, I’d be expecting one.”

Just as the words were leaving my lips Calvin started getting suspiciously hyper in the bath, so I let the water drain, helped him step out of the tub and wrapped him snugly in his towel. We made it to the room where his pajamas were laid out and I lifted him onto the bed. Seeing his face in the dim light, flushed and expressionless, eyes jerking up to the left, I knew the storm was coming. I turned him onto his side and within seconds he started to convulse; he didn't stop until three grim minutes later.

It is possible that, although Calvin has been sick, which lowers his seizure threshold, he may be habituating to his seizure drug. Since August his fits have gone from every two weeks to every six to ten days, and this last span was only two days.

Because of this development, yesterday in Boston, we discussed treatment options with Calvin’s neurologist, along with her nurse and dietitian. In an effort to prevent more seizures we are faced with either increasing his current medication again or introducing a second antiepileptic drug. With either option come more side effects. The thought makes me ill.

He’s been restless tonight. Right now he is banging on his crib for me to come and give him more water even though he drank three bottles, like a parched camel, just five minutes ago. I fear he is in store for another seizure before the night is over. There’s seems to be no end in sight to this misery.

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