I woke around 5 am this morning to Cole having a seizure in his sleep. It’s unusual for him to have seizures in his sleep but this is the third one this week. Oddly, we’re seeing his neurologist this afternoon to discuss the escalation of his awake seizures, and now the nighttime ones too.

I don’t know what effect puberty, hormones or growth have on the seizures but I notice them increase when he’s having a growth spurt as well as now that he’s hit puberty. They’ve changed in their expression too. It’s unsettling to say the least. In my head I know that they’re relatively harmless, and that he has little to no awareness of them. To witness them, however, is a bit unsettling. It also kills me that he has to experience them.

While he may not be aware of them while they’re occurring, he does often have after effects that linger, which I think he must sense. His color fades completely, and sometimes takes a bit of time for the flush to return his cheeks. He sometimes has mild after shocks, shakes and shivers, and he’s often dazed just following a seizure. My tendency is to continue whatever we were doing or saying so that he doesn’t spend time thinking about the cause for a lull. I don’t know if it makes sense but in my mind it does. I generally just feel helpless that I can’t make them go away.

Most of the medications for seizures have a lot of nasty side effects, including liver damage. He’s been on a medication that has few, and of those few, where he seems not to experience any. But it’s not working that well now and my understanding is that simply raising the dosage ceases to work after a time, and we may be at that time. I worry that we may have to start considering alternatives, most of which are not all that great.

It’s reassuring knowing we might have some answers or insight today. The way my mind plays, the layers of what ifs pile upon each other and start to melt into one big fright. I want a little peace for that beautiful brain of Cole’s. And for mine too.

One Response

  1. Hope the appt yielded some answers…sending much love!!

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