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.
Although Beth had two seizures the summer before 7th grade, she otherwise felt pretty good. The seizures shocked us and saddened us tremendously but then we went on. What other choice do you have?
By November, though, she started having almost daily migraines. She was miserable, plus missing a lot of school.
We tried two different migraine prescriptions over the next couple of months. But they either made her very dizzy or increased the severity of her headaches. So much so that she couldn't go to school for more than half a day at a time or not at all. So we stopped taking both of those meds and were back to square one.
In January, on top of the migraines, she started having severe side effects to her epilepsy meds. The exact same terrible side effects she had in second grade that caused her to change meds. We were devastated that her body was no longer coping with the med that has been a life-saver for the past 4 1/2 years.
As we had done previously, we started a very slow titration schedule, but this time it was a disaster. She just wasn't tolerating meds at all and it became an emergency situation that required us to get her off of all meds as fast as it was safe to do so.
We held our breath every day waiting to see if she was going to start having seizures. And she didn't for close to a month. She didn't make it school every day but she was keeping up with her school work and managing the headaches and weakness.
And then I got a call from her school one day saying that the right side of her face was drooping. I raced to school and we ended up calling 911 as the numbness extended down her entire right side. After recovering and then having it happen again while still in the ER, she was admitted to the hospital for two days. All of her tests were normal but she was now diagnosed with a second type of seizure – complex partial seizures.
Over the next month, she would average 2 – 4 every day, plus she had two grand mal seizures. She had more tests, had another scary seizure that required another two days in the hospital and then we found a drug that seemed to work. But as we were starting her on the meds, her seizures increased. She was having 5-7/day and she simply couldn't go on with her daily activities.
It just seemed as though it was one thing after another knocking her down and nothing was controlling her seizures. I can't even count the number of school days she missed and she was becoming despondent. With good reason. She had suddenly become physically disabled and her life had come to a screeching halt.
After talking to her guidance counselor, we had to make the very difficult decision to withdraw her from school. I quit my job and she and I just went home. I think her body and her spirit were just completely spent.
She and I spent nearly two months at home alone while the other kids finished out the school year. Our school system allowed us to go at a slower pace and her teachers excused her from a lot of work because her grades were so high. And those two quiet months at home helped give her time to adjust to the new medication.
We'll finish Beth's story on Friday but tomorrow and Thursday, we'll have some very special guest bloggers.
*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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