Choices, Choices

Forgive me if this post rambles a bit - I am completely fried...no sleep, stressed to the max and just sick of the whole thing. Kael has had 9 seizures since Saturday afternoon...all during sleep. The seizures are bad enough, but the worst part is that they disrupt his sleep and make him miserable while he's awake. We spend our days riding in the car, clicking through show after show, trying to find one he will watch for more than 30 seconds, or attempting to coerce him into eating SOMETHING!

As I stated in my last post, we have been weaning Clobazam. Even at the highest dose, he was still having 15 seizures or so a month. We felt that the side effects were not worth it, since he was still having so many seizures. All of his seizures were under a minute long and self terminating. As we got lower and lower on Clobazam, we noticed his good days were better. He was happier, more alert, trying to talk more. Unfortunately, his bad days were worse. Now, even while he wasn't seizing, he was miserable. It was doable when his cycles were only lasting 2 days and were once a week. But now that he is completely off of Clobazam, he is having cycles that last 2-4 days, with only a 2 day break, and then the cycles begin again. His quality of life (and ours) has plummeted. We have tried giving him Lorazapam and Epistatus as emergency meds, but they don't break the cycle. So we're back on Clobazam, as much as we hate it. His normal dose is 5 mgs twice a day. We gave him a loading dose to sort of shock his system into stopping the cycle - (10mgs) but that didn't work, then we gave him another 5 mgs at midday and another 5 mgs at bedtime - but he is still having seizures. And now, the seizures are lasting a little longer (longest was 4 minutes) and stopping and starting. When they restart, they look a lot more like the seizures he used to have when he was in status. Thankfully though, they do still stop under 5 minutes. We gave him Epistatus for the one that lasted 4 minutes, but it stopped about 30 seconds after the dose, so we don't think it was the Epistatus that stopped the seizure.

We don't know if we will stay on the Clobazam - it seems to only work to a degree. We also don't know if the reason he was doing so badly is definitely because he didn't have the Clobazam, or because he was going through withdrawal after 3 years on Clobazam, or just coincidence. Like everything else with this disease, we always feel like feel like the whole thing is a crapshoot.

We will hopefully be meeting with our neuro on Wednesday to figure out the next step. But for now, we're just hoping to stop the cycle and get some sleep.