In the past three years since I've become a parent to a child with seizures I've learned a couple of things. The first thing I've learned is that the variety of seizures that H. has is pretty mild in the great scheme of things. Some children, despite medication, still have multiple big seizures in a day and their parents are helpless to do anything but be supportive. I know that these parents are desperate to find relief for their children and that it is a difficult balance to find the right amount of medication.
Even though H's seizures are on the very mild end of the spectrum, the goal of the neurologist is still to get her seizure-free. I can understand this goal and for the most part I share it. To reach this goal requires trying different medications to see how they work. Each medication reacts a little differently in each child and different doses can also react different ways. (Sometimes a higher dose has fewer side effects than a lower one. Go figure.) But these medicines are tricky things and not something you can just start and stop. You need to slowly add medications, wait to see how they will work, and if they don't, slowly wean them away. It is a time consuming process.
Yesterday I had multiple phone calls to the neurologist's office because of my concerns with the effects of drug #4. On the plus side, with this drug, the seizures seemed to lessened a bit, so that we could go a month without a seizure, but the next month we could be back to her regular cluster of 2 or 3. It wasn't perfect. Since it seemed to be doing something positive, the doctor upped her dosage. Now, I had already been seeing behaviors I wasn't crazy about, but when they are starting, it can be difficult to be really impartial. Was what I was seeing really a side-effect of the medicine or of my over-active imagination? You start to second guess yourself.
With the upper dosage, though, there was no question that we were seeing some disturbing things. I had thought that schoolwork was becoming increasingly difficult, but now it was even more so. There was a vagueness about H. that was also disturbing. She is a child that really has to work on being present in her surroundings and we were beginning to miss that presence. She was more and more becoming an empty shell of a child. Even more disturbing and more unusual was that we were slowly losing the happy, positive H. that we were used to seeing. Every night we noticed that she was extremely depressed and sad. We have also seen oppositional behavior that we had NEVER seen before. She was changing before our eyes, it was just so slowly that we didn't see it at first.
What finally caused me to make the phone call was two nights ago I was tucking her in and as usual she asked what we would be doing the next day. I answered that we would be doing schoolwork in the morning. Now, every single time I've said this to her in the past, her response has been, "Yeah!" Even though it is not always easy for her, she loves doing her schoolwork. Two nights ago, her response was, "Oh," in a very depressed, sad tone of voice. This was clearly not the same child.
The next morning I decided to try another round of schoolwork, though it had grown increasingly difficult and H. had grown increasingly uncooperative. When she couldn't even think clearly enough to get through one very simple page, I knew we had reached our limit and called the doctor. We are breaking in a new neurologist and it took multiple phone calls to get the agreement to completely wean the medicine so we could try something different. I know this game now. I'm not going to spend time messing around with something that is clearly not working.
And I am very glad that I pushed. Last night as I was reading to G. and L. (H. and K. were waiting for J. to read them the book they are listening to), I heard a loud crash as though a bookshelf was falling over. When no one called back in my yell of, "Is everything alright?" I jumped up and ran to investigate. I found H. coming out of K.'s room and when I looked around, I couldn't seen any furniture toppled over. I was pretty confused. It took a while for me to make sense of what happened and also deal with H. who had completely disassociated on me, Here's what I think happened... though I'm still not sure. H. was on the stairs to the 3rd floor and somehow slipped and fell down on a pile of toys. In her distress she ran and hid in K.'s room. She had hurt herself (mainly bruising), but that wasn't the most concerning thing. As I tried to figure out what happened and reminded her that when she's hurt I want to know and she should run to me or yell that she needed me (living with G. and L., she clearly has living models for this behavior... they do it all the time), she continued to not meet my gaze. I asked why she wouldn't call for help and her response was, "Nobody likes me."
Yeah. That was my reaction, too.
So, we are beginning the wean off the drug today and it can't happen fast enough in my book. I just hope that as the drug leaves her system we find that her security, felt safety, and attachment are still in tack, somewhere under there. Otherwise, we have just had an enormous set-back in her emotional well-being.
Once again, I am left wondering which is the lesser of two evils... the seizures themselves or the drugs that are supposed to help. I hate this.