Something has gone wrong. In my plan for my life, vague as it may be, my children are happy and healthy with the minimum number of problems required for them to become interesting people. But this is all more than I bargained for. Ruby’s epilepsy has thrown a wrench into my otherwise foolproof plan. And what’s worse, every time we think we have it under control, something happens to show us that we never really had any control to begin with.
Now, before I complain too much, let me say that Ruby has not had one of her crazy extended seizures since December, and in that we are very lucky and grateful. Whatever else happens in my life, if I never have to go through any of that again I will be okay with it. But the thing is, her short little blippy seizures are back, so now we get to play a game of medicines. And this is frustrating and infuriating.
It started a few months ago, when we were decreasing her old medication in favor of a new one. Everything was going well, until we hit a certain decreased dose. That’s when she started spacing out again, for a few seconds at a time. We called the neurologist, made an appointment, and bumped the medicine up to the previous dosage, and just sat there for a while. No seizures, but she was still on both medications, which I guess it not ideal.
Now her neurologist is on sabbatical. This means that we are dealing with his temporary replacement, who just happens to be an epilepsy specialist. At our first appointment with her, she told us that, in her opinion, Ruby had been misdiagnosed. These absence seizures that we thought she was having might instead be partial complex seizures, and might require a totally different medicine to control them. I wish I could tell you that I don’t know what all that means, but sadly I have become something of an epilepsy expert recently.
The big takeaway from all of this was that she wanted to quadruple the amount of medicine Ruby was taking, moving slowly, bumping up her twice daily dose by 5 every 5 days. Easy to remember. So we did. And at the third iteration (up by 15) of this plan, Ruby just crashed. We started the new dose on Saturday night, and on Sunday she was exhausted. Not like normal tired, but as in we went to a bowling pizza birthday party (which is her favorite thing ever), and she didn’t even put her bowling shoes on. She literally lay on the floor for two hours, barely able to move. On Monday she stayed home from school because she couldn’t summon the energy to get out of bed, and everything that happened to her, whether good, bad, or indifferent, caused her to burst into tears and collapse onto the floor in an emotional puddle.
All of these things are side effects of the medicine, so her mother and I decided to bump the dose back down. This clearly was not working. We dropped 5 off the dose and called the neurologist to let them know. On Tuesday she went on a field trip to a farm, and while the other kids were playing and running, apparently she lay in the sheep pen next to her favorite sheep and rested, because she was too tired to participate. But at least she made it to the field trip at all. Yesterday she seemed to be feeling better, with more energy, so she went off to school and I was a little more at ease.
I got the call later that day that she had had her first ever seizure at school. She was fine, just a little space out and then back, and no one had seen it; she had self reported it. Either way, it made me sick to my stomach. She had never had a seizure at school before, so in some ways I felt that she never would. I don’t know why I thought that, but there it was. I suppose in hindsight that self-imposed stupidity and blindness was never going to work long term, but as an American I am pretty good at it, and it had been working out up until that point.
When we called the neurologist, they said to bump up the new medicine to a higher dose again, and lower the old one. You know, just to see if it works. If it doesn’t, we’ll try something different. I mean really, we have no idea what is going to work or not; it’s all a giant guessing game with my daughter at stake, and so we’ll bump medicines up and down, switch to different ones if we need to, and hopefully land on something that will fully control whatever it is that is happening to her. Or, I guess, maybe not. And along the way she will be emotionally and physically exhausted. She will miss out on things. She will not participate fully with the other children. And there is nothing I can do about it. Except not sleep well and feel sick. And I’m pretty good at that too.