Now see, this is why it always makes me nervous to do glowing blog entries like the last one.
This morning I was moving the blanket off of Collin to put something in his feeding tube when he startled out of his sleep and had his first tonic-clonic (grand mal) seizure.
At first, I was too shocked to be scared and couldn't figure out what the heck was going on, but then I yelled for Kyle and picked Collin up and tried to pay attention to what was going on so I could report it later if I needed to and so we could decide what to do if it didn't stop. Luckily, the jerking subsided in under a minute. I had to rush out to the dentist at that point and he had another one while I was gone, so now he is pretty out of it.
Let me just take a moment here to comment on how ridiculous and excruciating (not physically) my time at the dentist was this morning. I cannot emphasize enough how great it would be to have a box you can check when signing in that says "I prefer not to make conversation". I am never good at or fond of this part of the dentist visit and this morning I think I would have preferred a filling to it. Going on very little sleep and reeling from the morning's development, the last thing I wanted to do was make small talk; but the hygienist, bless her heart, insisted. At one point, after pushing and pushing about what Collin is doing now that he's one, she must have seen a note she wrote to herself the last time I was in, because she stopped suddenly and asked, "Now, is your son special needs?" I blinked a couple of times and said, "He has them." "Has what?" "Special needs." "Oh! So is he going to walk?" Slow blink. "We don't know." "So, you're just going to have to wait and see?" "I guess so." And I was there for an hour.
So ANYWAY. Now comes the fun part when we try to decide what to do. This usually starts with trying to figure out what might have caused the seizures in the first place. Could it be that we started giving him his oil a new way last night? Could it be that his Keppra wean is over? Could it be something completely different that we have no way of discovering and only coincidentally happened this morning? Yes, yes, and yes. You can see why determining a course of action is so maddening. How do you know what to do when you have no idea what's going on? You don't know. You never know anything.
So the plan (for now) is to hold tight for a day and see what happens. If it's something that will work itself out, we don't want to jump the gun with meds, and since the seizures aren't too long at this point (although any seizure is too long, don't get me wrong) we don't feel incredibly pressured to do something different right away. Plus, we're still in the middle of tweaking his ketogenic diet and will hopefully be adding branched chain amino acids by the end of the week (another post on that later). Luckily, we've gotten good at laying low and plan on doing just that at least for today.