Sunday, March 28, 2010

Greetings from SeizureLand

After over 3 weeks with no seizures, Collin was extraordinarily sleepy Wednesday, which I figured had to do with his 3+ teeth coming in at the same time and possibly something upsetting his tummy. Then around 6:00 that evening, he started having his same tonic seizures and has been having them ever since.

We're in an interesting place in terms of determining how to treat these seizures. In the past, we would have loaded him up on clonazepam until they stopped. Ever since our last hospital stay in which Collin was unresponsive due to what we think was too much clonazepam, we're more reluctant to do that. Plus, they do seem different. Rather than seizing more often and closer together as time goes on, he rarely seizes sooner than 10 to 15 minutes after another seizure and sometimes just stops on his own and goes to sleep. He seems to be doing fairly well throughout the night. This is a sign to us that ketogenic diet is definitely having an effect. So, up to this point, we have continued our Keppra wean, kept the clonazepam at the same level, and called the ketogenic dietician about tweaking his diet for more seizure control. We should hear from her shortly.

I was talking to my sister Wednesday right after the seizures started and I told her that I had to find some way to cope with seizures that didn't make it feel like the end of the world again every time. It's just not sustainable.

So, I guess that's kind of what we've been trying to do over these past few days. We're still not really going out much because it's just too hard on us for Collin to have these seizures around other people, but we did venture a brief foray to the farmer's market yesterday morning and have made it out for a walk or two. We made pizzas and watched Lost and did some things around the house and yard. We took turns getting out of the house and getting some exercise. Something about those little ordinary things sort of tacked us to reality. It kept us from getting sucked down into the mire of fear and confusion that comes with watching your child endure something you have no power over.

I'm certainly not saying we have it all figured out. I can feel my body tensing whenever Collin starts to fall asleep (he only seizes when he's falling asleep, which is pretty often when he's seizing a lot, because it makes him so tired), we have to regroup and calm down fairly regularly, and we've gone back and forth dozens of times on what course of action to take with the meds. But at least we've made a healthy step in the right direction.


  1. The past two months I've been pretty bummed about B's situation. Before Bertrand broke his arm he was having strings of seizure free days. Once he broke his arm (as you obviously know, pain/stress lowers the seizure threshold) he was having at least one tonic a day (on top of myoclonics and atonics). Since we'd started a rouge wean, we stopped decreasing the keppra during this time. Two days ago B started using his arm. Yesterday and so far today he's been SZ free! A few more days of this and we'll go back to weaning! Shh! Don't tell our neuro. ;)

    You every reason to hope and expect that once Collin's pearly whites come in, he'll be back on the SZ-free track!

  2. Can it be if he is growing, the diet needs to be tweaked also?

    It is great that you and Kyle recognize what it takes to avoid that dark hole of fear.

    Will pray for you guys.

  3. Having two parents who have learned (or are working on learning) how best to take care of themselves so they can take care of him is a huge blessing for Collin. We'll be thinking of you, crossing our fingers that his teeth give him a reprieve soon.
    Love and prayers.