I've lost track of how many seizures Alex has had in the last month. Too many to count, unfortunately. They seemed to start getting bad while we were on vacation. I think she had 6 while we were there. As of right now she's averaging two a day. Some nights she's having 3 and 4. It doesn't make sense, but they seemed to have gotten worse since we added the Keppra. It's coincidental, but frustrating. We saw her neurologist on Friday and he left her Depakote doses the same, but he's increased the Keppra. Her Keppra level was 18 and according to her doctor they can go as high as 60 (I think that's the number he gave me). So he's gradually increasing her Keppra dosage, we started this week with an additional ml three times a day and on Friday we'll increase it another ml so she'll get the Keppra three times a day, 4 ml's each dose. She's still having a few a night, but her doctor did say that it could take up to three weeks for us to see any difference. Talk about a test of patience.
We are in the process of getting an MP5 alarm for her bed. It's a sensor that goes in between her mattress and it will alarm any time there is any convulsing. Last Saturday she was taking a nap and I checked her monitor to see if she was awake yet and she was in the middle of a seizure. I never would have known if I didn't look at the monitor. Normally when she's convulsing I hear it because her feet hit the sides of her bed. Aaron was working the NASCAR races on Saturday so I was waiting up for him and doing laundry around midnight. I went into her room to put some laundry on her dresser and when I walked in her room she was again in the middle of a seizure. She was laying perfectly straight so there was nothing her arms or legs were hitting. In reality, I really don't know how many seizures she's actually having. The alarm is something I definitely can't wait to get in place - needless to say, sleep hasn't been something we've gotten a lot of lately!.
She's had a really tough week this week, but it doesn't help that she's had a really bad respiratory cold/virus going on. Hopefully she's heading back to school tomorrow!
Lots more to blog about - stay tuned!