Let’s just start out by stating the obvious. Seizures suck. They really suck. I mean they really, really suck, hard.
Karin and I know of and avoid most of the things that can trigger Liam’s seizure activity but when you get right down to it you just never know when one’s gonna hit. Liam had a big one today.
The seizure activity that accompanies Liam’s syndrome leaves us always practicing and perfecting a stressful balancing act. Sedation meds are needed to prevent seizures but the doses must be small enough that he doesn’t sleep the day away. We ride a dose that works until he gains enough weight to outgrow it. A period of seizures follows until it becomes often enough that we need to increase the meds to keep up. Sure we could dope him up enough that he never has a seizure but he’d rarely be awake. We don’t want him having enough seizures that he’s routinely uncomfortable or in pain either. In the middle lies an acceptable and manageable amount of seizure activity. It’s a high-wire act for sure but one that Karin and I have gotten pretty good at. We don’t even need those big long sticks for balancing anymore.
As I said, Liam had a big one today. Late in the afternoon he had one with his mom which was long enough (13 minutes) that he needed his diastat to help him break it. It’s basically a shot of Valium. He has been in la-la land ever since. Not sleeping, just chilling out on the couch with his daddy while we read and watch TV. He is justifiably groggy but seems content. He’ll be pretty out of it for the next day or so and we’ll just have to wait and see if he has any more events in the next few days before we give the neurologist a ring. In the meantime we do what we always do. We make Liam as comfortable as we can, we give him all the hugs and kisses that he wants, and we let him tell us what he wants. Right now all he wants is to turn the lights down and read a story with his dad until he falls asleep. And since he’s in charge right now….
… I’ll talk to you all later.