Last Wednesday we had our scheduled visit with Alex's neurologist. She's been seizing, on average, about 2-3 times a week. Her blood levels looked good so the doctor decided to up her Keppra to 7.5ml's at bedtime to try and "keep her covered" during the night since that's when her seizures are occurring. He said her Depakote levels were about as high as he wanted to go so the Keppra increase was the best course of action to take. To recap, she's been on 5ml's of Depakote and Keppra in the morning, another 5 ml's of both in the afternoon and was at 7 ml's of Depakote at night and 5ml's of Keppra. We started the upped dosage Wednesday night - and she had a seizure. And she had another on Friday, and Saturday, and Monday and Tuesday. Merry Christmas. On Christmas Eve she was out of it. She sat in her chair and was dazed. Same thing on Tuesday - needless to say she didn't have a very good Christmas (Christmas post to follow). She also started having continuous, random movements with her mouth. Not normal. It was so hard to see her in such a dazed state all day. We were at my sister's house on Christmas day and she was out of it, and then really agitated. Then she started crying so we had to cut our Christmas day short (right in the middle of presents) to take her home. Aaron and I decided that night that we were going to bring her back down to the 5ml's of Keppra that she had been on and hoped she wouldn't be so out of it. On Wednesday I called her neurologist and told him how she was acting and he immediately said to bring her back down to the 5 ml night time dose (which we had already done the night before).
We're still waiting....almost 4 months later...for the seizure alarm for her bed. In the meantime, she's still seizing every night. The other thing we discussed at her appointment is that when she's sleeping she will jerk really hard and yell out - it's almost as if she's dreaming and she's falling in her dream - it's the only way I can explain it. Her doctor said those could be seizures as well. We discussed next steps and it seems like we will likely go back in the hospital and have more EEG studies done to see if those in fact are seizures and if the grand mal seizure pattern has changed. And, because we can't keep her at the Keppra dose he wanted, he said he will either add a THIRD (Lord, I hope not) seizure medicine, OR take her off one of the two she's currently on and try and change the meds while she's in the hospital when they can monitor her.
The one thing the doctor said that really irked me was, "Do you know how many Angelman parents would be thrilled if their kids were averaging two to three seizures?" Thrilled? Ugh. And I had to remind him that we only have a CLINICAL diagnosis, which is crappy in itself. What if all of the doctors are missing a bigger part of HER picture because they're just assuming it's typical to the syndrome, the syndrome they can't definitively say she has? I'm part of the Angelman community - I KNOW all of the devastating statistics. Doesn't really make it any easier. It doesn't matter if your child has Angelman Syndrome, or "only" epilepsy, I don't think any parent should have to watch their children have a seizure and feel so totally helpless. Heck, for that matter, I wish there was no such thing so children wouldn't have to endure them either. But I guess that can be said for any type of diagnosis a parent is dealt with.