B does not respond well, I keep relearning, to stressful situations, crowds, lots of visiting, and the over-all overwhelming expectations of the Holidays. On Christmas Eve she had a very hard time at the dinner we had, feeling very stressed out but happy to see her cousins. After everyone had left and it was just me, her, and Andrew, she had a pretty big meltdown. She yelled at me and tried to throw the cat's scratching post. She couldn't say what was wrong, which is something we've been working on, but expressing herself comes very hard to her.
I have long suspected that she has a lot of seizure activity at night, but not in a very obvious way. Her sleep is very restless, and she has repetitive mouth movements and moaning. She's scheduled for a 24 hr EEG, but as with everything in our underfunded health care system, this means a long wait. Some research on my part has turned up Electrical Status Epilepticus During Slow Wave Sleep, a condition that will only be made clear with the 24 hr EEG. I will discuss it with Dr. P on our next visit, although there likely won't be anything extra we can do that we aren't already trying. I would like a night time seizure monitor for her, though, because I don't ever really sleep well as I'm always worried about night time seizures. During sleep is the only time she has Tonic Clonic seizures, and even though she hasn't had one of those in years, still they worry me.
However, Christmas Eve I climbed into bed at 3 a.m. and as I lay there, she had a Partial Complex seizure. She didn't jerk, she curled her knees up to her chest and went rigid. After a minute or so it stopped, but I remained on edge. At 6:30 she woke me to say she had wet the bed, which she doesn't usually do. I suspect she had another seizure.
Christmas morning she slept and slept. I woke her up finally at 12:30 p.m., and she was so grumpy. I finally got her up to open presents, which she did, and then an hour later had another seizure and collapsed on the couch. We let her sleep. A while later she awoke for a bit, but after unsuccessfully trying to get her to eat, I found her collapsed on the couch again. Again she lay down to sleep, and then had another seizure in her sleep, at which point I gave her an Ativan. When she woke up around seven she had a paste around her mouth, which I feared was the melted Ativan. Now I had no idea how much she had ingested, which was worrisome if she did have more seizures. I also didn't have anymore Ativan, so I told Andrew I would take her to the hospital if she had anymore seizures. But this time she was alert, and got up like nothing had happened and coloured for awhile. Then she had another seizure, so off to the hospital we went.
There's not much they can do at the hospital, a fact that I have learned well enough. They check her out, watch her for awhile, give her more Ativan if she needs it. For this reason, I avoid going there. It is a lot of stressful waiting for us. The benefit comes in ruling out any other issues that I am unaware of and, in this case, getting some more Ativan. I also needed some clarification on how much she can have, as she has these kinds of attacks, called Status Epilepticus, rarely, and it's never been the case that she's had more seizures after having the Ativan.
She had another seizure in the hospital, which was kind of relieving. I know that sounds weird, but often B's seizures are like a ghost that for a very long time only her and I really saw. Exposure to her seizures is really dependent on how much time you spend with her. Some people have known her for years and have never seen them. I know the hospital and her doctors know they exist, but having them see her have one makes it concrete and I feel less like a nutcase. It has been that way with people who feel that I am just over-protective, and then they see them and I have to resist shouting, "See, see! The seizures are ALIVE!" Often, everything just feels surreal and, at the same time, hyper-real.
The neurologist on call told me to slightly increase the medicine (Topamax) she's on and decrease it more slowly. I had been decreasing it at the same rate I increased it. She also told me that B can have 2 or three doses on the Ativan throughout a 24 hr period, as she's big enough for that now. And I can call the on-call neurologist from now on for direction regarding giving her Ativan and whether or not to bring her into the hospital, which is a huge relief. Finally, she told me something very interesting about the next med B's neurologist wanted to try. I thought we had been waiting to start it until all the new medicine, Keppra, until B had all the Topamax out of her system, but it turns out that they have to apply for special permission for Keppra, and that it's very expensive. If they get the special permission though, it's covered.
We finally left at four a.m.. We went through a drive through for burgers, because she was finally hungry. When we got home, she ate half her burger, had a seizure, and dropped her burger in her boot. :-( How totally unfair was that?
On another note, awhile ago I read a report from B's public health nurse that said B has Lennox-Gastaut syndrome, which I also need to discuss with Dr.P.