Another Little Update

The meds seem to be working on Joel's irritability. Or pain. Whatever it is. The last 5 days he has been much happier, even smiling and laughing once again. Which is a huge relief and makes me very happy.

His seizures have NOT become more controlled yet. In fact, the past three nights he has had increased seizure activity once again. It is easy for me to tell this now, because if he has a prolonged, intense seizure, his 02 falls and the monitor goes off. This doesn't happen for the shorter, "smaller" ones, just the longer, "bigger" ones. (Short and long refer to the actually time the seizure takes, smaller vs bigger have to do with the intensity of the seizure, which seems somewhat correlated to length, but not always directly connected, if that makes sense. For those of you who are really interested in seizures from a medical standpoint, or from your own children.)

So the sat monitor has been going off for the past few nights. I can somewhat counter-act this by placing him on a "low dose" of 02. This brings his oxygen level up enough that it doesn't drop below 90 when he has a seizure. What I can't do is rid myself of the unease I feel as I lie in bed and hear the subtle but distinct noises of the seizure activity.

This morning (5am), after lying in bed and dozing on and off to the noise for about an hour, I just got up and got him up too. He was wakeful between the seizures anyway, and I didn't want him to wake Steve up. Plus I figured that at the end of the extended period of seizures, he might have a bit of a crying jag before falling asleep (which he did).

In any case, I didn't get much sleep last night. I'm ok with that. It is, thankfully, Sunday, and I got a bit of sleep later in the morning. I'm just happy that Joel is happier.

Of course, not too crazy about the uncontrolled seizure activity for several hours at a time. I just gave Joel his first dose at the second and final "step up" for the med that the neurologist gave us. I know that she'd say we might have to wait at least a week until the meds work, but...? Maybe I have been spoiled, but when we have upped his Keppra in the past, it has worked almost immediately. This time it's gabapentin, but it's hard not to get a bit concerned when the seizure activity seems to be almost increasing again, while we are upping the meds.

But that is what this disease is like. Every time a problem is fixed, you go back to dreading the day with the problem that can't be fixed anymore. For now, I am just happy that Joel is smiling once again. His laugh is so beautiful.