This is part of a month-long series that my teen daughter and I are writing about her life and learning to live with epilepsy. To start at the beginning, click here.
One of the hardest things to accept about epilepsy is that it's ever-changing. Which we encountered in a big way towards the end of Beth's second-grade year. She had a terrible reaction to a medication that had been wonderful for more than two years and we had to take her off it as fast as possible.
Her neurologist recommended trying her on Keppra. The titration schedule was crazy and she felt terrible for weeks. Even after she was weaned off Lamictal and was on a therapeutic level of Keppra, she experienced terrible moodiness and was angry at everything. We ended up switching her to another form of Keppra to see if that would help with the side effects. It was an extended release version and after a couple of weeks, our precious little girl came back to us. It had taken months out of her life and she really doesn't remember much of second grade but she was back.
Much like the honeymoon period with Lamictal, the first few years on Keppra XR were fantastic. She finally gained weight and grew. Before she started fourth grade, we moved and she handled that stress beautifully. She had a panic attack at orientation at her new school but no seizures. And she practially sailed through fourth and fifth grades, with only one seizure during that two-year period when she had a cast taken off.
She started middle school, made new friends again, and we very quietly started counting off the months since her last seizure. Many children outgrow epilepsy and, of course, we had always hoped that she would. In order for her doctors to even consider taking her off medication, she had to go two years without a seizure.
As she flourished in middle school, and grew and felt better, we were quietly edging our way towards that two-year mark. She and I didn't talk about it much at all. I remember her saying something towards the end of sixth grade about it being almost two years and I just smiled and nodded at her. I could tell she was trying so hard not to get her hopes up and so was I.
And then we did it! Two entire years with no seizure activity at all. The journaling below is from the layout I made at the time and describes our elation.
Journaling: I’m not sure we thought that we’d ever see this day but today you reached an HUGE milestone in the world of epilepsy. You hit two years without any seizure activity. It’s been the goal since the beginning – over 7 years ago. Because if you can go two years without a seizure, it means that there’s a chance that you will outgrow it. It’s the anniversary that neurologists all wait for and it’s the goal of all epilepsy patients. And we really never thought you’d get there. This past month you and I have been very quietly counting down. Neither one of us spoke about it very much and I think we were both afraid of jinxing it. You’d mention it and then walk away. I’d ask you how you felt about it and you didn’t really want to talk about it. And then the day arrived. June 11, 2013. And you had done it. Really, truly done it and now you can start a whole other countdown – the countdown to possibly tapering off your meds. You opted to stay on them for another year but the difference is that now it is YOUR choice. And that it HUGE. I have never been so proud of you. Our milkshake toast to you was just the beginning, babe. You have your whole life ahead of you. xoxo
And then, just 11 days later, with no warning, she had a grand mal seizure. And another one the next day. It was absolute and total heartbreak and would, unfortunately, be just the beginning of a disastrous year for her health.
*If you'd like to read all of our 31 Days posts about living with epilepsy, click on the button on the sidebar or start here. And if you're wondering what the heck is going on and who Beth is, click here. 🙂
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