day three

The blue light of dawn crept behind the blinds as I cradled my shivering child. I heard the chirp and caw of cardinals, jays and crows, while my little bird was silent in the wake of a grand mal.

On day three since his last grand mal, it is eighty degrees. Some leaves wilt in the heat while others thrive in the shade of trees. The house is quiet and cool, the open windows allowing a slight breeze.

I feel weary, having woken before dawn several days this week. With this kid, I never seem to catch up on sleep. Calvin has not been himself and I wonder, as always, if it is virus, infection or benzodiazepine malaise. The boy is listless, and I hope there is nothing festering under the cast that is on his leg.

His breath smells sour, his fingers too; he fishes them around in his mouth and they get covered in drool. Black circles linger under his eyes. He has a temp of one-hundred degrees, which might be due to withdrawal.

We’re at least a year away from his last dose of clobazam, the addictive benzodiazepine we’ve been weaning for over two. If we decrease too abruptly or too fast, he suffers worse affects, as do we. So we take his wean slow and, if possible, steady. It won’t be until he is completely of the stuff—free and clear for several months—before we’ll know if the side effects will abate, before we know if he’ll suffer fewer seizures. For now, he’s in an active state of withdrawal which will last, in total, over three long years.


  1. I haven't done a wean of the Onfi for over a year now. I'm scared to do it.

  2. Dreading a wean ourselves, but I fear we are a long way from it being an issue. Best of luck on your journey.

  3. Similar situation weaning from massive doses of pheno. At least two more years. In the meantime, the depakote wean was supposed to be cake, but wound up causing 9 withdrawal seizures in 12 hours. Nothing they've told us about these drugs is true. Nothing. It's important and helpful to read others' experiences going through this. I wish you strength and moments of joy in the midst of it all. Chris Myers (I don't know how to post other than anonymously.)