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.
After Beth's second grand mal seizure, the neurologist wanted us to consider switching medications. It wasn't a good sign that she had a seizure while on this med and she was too little at only six-years-old and barely 40 pounds to increase her dosage anymore.
Within a couple of weeks of that seizure, I was cleaning the bathroom while she was in the tub and glanced over as she leaned forward to grab a toy. And was horrified to see all of her ribs almost popping out of the skin on her back. I immediately put her on the scale and she was down to 36 pounds. She had been around the 40% percentile for weight and losing 10% of her body weight was enough to drop her off the weight charts completely. We had to do something quickly to help her gain weight and that meant changing meds.
We switched her to a drug called Lamictal and, happily, it worked beautifully for a little over two years! She went through the rest of kindergarten beautifully and we were happy to realize that not only did she gain a couple of pounds but the extreme quietness that we had seen from her disappeared and her shining little personality came back to us. From as early as I can remember, Beth has sung around the house. She always wanted to be a princess and, according to her, princesses sang and danced. So she did, too.
A couple of months after switching meds, I remember hearing her sing as she played one day and almost burst into tears. I exclaimed to my husband that, "She's back! She's singing again!" In all the worry and fear, I hadn't even realized that she had stopped singing along the way.
We struggled to help her gain weight for two years and she had a couple more seizures but they were months and months apart. We were starting to figure out that when she had a seizure, she was probably outgrowing her dosage and we stopped worrying too much because that also meant that she was slowly gaining weight and growing. She was still tiny but she was back around the 15-25% percentile on the growth chart and we could live with that. So we slowly increased her dose each time she gained weight or had a seizure.
Looking back now, I think it's easier to remember the traumatic things that happened. We had a few less-than-understanding moments with two teachers and one even told us that Beth "was always going to be very slow" in school because her standardized test score was so low. Even when I explained that Beth had had a seizure while taking the test the previous spring, she pursed her lips at me and said, "I don't think that's what this low score is showing." I was astounded at her lack of sensitivity.
Remembering the look on that teacher's face makes me want to march back into that classroom and throw Beth's report cards on her desk. I'd love to remind her of that conversation as she looked at Beth's straight As in the honors program and all of her accomplishments in orchestra and the National Junior Honor Society. I won't be that petty but the momma bear in me loves to fantasize about it.
But even though those kinds of memories still make me angry, Beth had a great couple of years in school and made a lot of friends. We were starting to cope much better at that point and learning to live with it.
Until one day towards the end of second grade. We had learned through our experience with Topamax that Beth was very sensitive to the many different side effects of anticonvulsants, especially at higher dosages. As she grew during second grade and we increased her levels, we were starting to notice behavioral changes, too. For her privacy, I won't detail them here but it became very clear one day that she needed to come off Lamictal. And quickly. We had lost the bright, shining personality of our little girl again.
I wrote a blog post back then that explains much of what we went through at that time and how difficult it is to switch medications - switching to Keppra.
*We're almost done with this series - we'll finish up with Beth's history over the next couple of days and then introduce you to 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. :)