After a week on Clonazepam (Klonopin) to ward off seizures while she was getting past infected ear pits, Hermione is finally weaned off.
This drug is such a blessing, as it allows her to stay off daily seizure meds like Keppra, but being on and especially coming off is no fun at all. We give it to her whenever she gets sick, or when lately when she isn’t visibly sick but has a short seizure that doesn’t require doctor care but can potentially lead to a bigger one.
While on, it makes her grumpy, sleepy and dizzy (we know this because her balance issues get worse while on it) and when she comes off the withdrawal can be brutal. We wean her to a half dose for a day or two before we cut her off. While coming down from the med, she’s so grumpy! And jumpy. And once we cut it, her reaction is like clockwork. Little sleep at night and no daytime nap, followed by her just zonking out. And when you have a kid with a history of seizures who sleeps like that, the thing in the back of your mind is wondering whether she seized when you weren’t looking and is now postictal, or if it’s just that she’s sleepy.
I know some adults who have been on Clonazepam for short stretches. They tend to say that it’s rather traumatic. People can hallucinate and loose touch with reality. And the withdrawal is pronounced. Makes me wonder intently about what is going on in her little body and head when all of this is happening.
But the great news is that thanks to this medication, we’re three months without an ambulance ride! HOW AWESOME IS THAT?? Pretty darn awesome. As such, the pills are worth it, warts and all.
(Quick followup to this post: We did have an ambulance ride four days after I posted this originally on March 9th. We used Clonazepam as a rescue med, which has worked on a couple off occasions and is an off label use. This time no dice. She only seized for 12-15 minutes and was done seizing before EMS took her out of the driveway. No PICU stay. Still no fun!)