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.
During her first month of kindergarten, Beth started taking a drug called Topamax. As I mentioned earlier, the neurologist didn't wait for a second grand mal seizure to happen before she put Beth on drugs because she thought she had been having absence seizures all along. But it wasn't an official epilepsy diagnosis yet.
Topamax is an anticonvulsant that also prevents migraines and seemd like a perfect fit. Anticonvulsants are tricky meds and you have to start and stop them very slowly so it took about six weeks to get her to a therapeutic dosage level. During that time, we just waited and watched and worried.
As the weeks went by, her headaches seemed to be decreasing, she hadn't had another seizure, and her teachers' reports were glowing. We were starting to relax a bit although we were nervous about some weight loss and how quiet she was. One of the side effects of Topamax was weight loss so we had been watching for that. As we got farther into the fall, we were noticing that she simply couldn't make herself eat. She would even cry if we tried to force her. And we were adding Carnation Instant Breakfast to her morning milk, extra peanut butter and Pediasure into her diet, but she was still losing weight.
But although she had gotten very quiet and we were worried about her weight, she was doing well in school, continuing to make friends, had a wonderful 6th birthday, and hadn't had another seizure.
Until one day in mid-December. Her teacher called me and said something was just off about her and maybe she should go home. I immediately went to get her and she was very happy to see me. She really seemed fine. Tired maybe, but okay. I had a bunch of holiday packages in the car to mail and since she seemed fine, I decided to stop at the post office on the way home. There was a line and we were bundled up in our winter coats amid a large group of other people waiting in line. I was starting to get uncomfortable and so it didn't surprise me at all when Beth complained of being too hot.
As soon as we got up to the counter, I put my packages up and had them weigh them quickly. I had noticed that Beth was very pale and I was trying to hurry. Just as the clerk finished weighing the last package, I happened to glance back down at Beth. As I was glancing down, she very, very slowly, leaned away from me and started falling. Or perhaps it was very fast. But it felt like slow motion to me. Her body was rigid so it was like watching a toy soldier just tip over.
I managed to catch her and get my hand under her head before she hit the floor and the seizure started. In front of about 20 - 30 other people. Someone screamed, everyone gasped, the clerks all leaned over the counters and I remember someone saying, "Is she okay?" over and over again. And I said, "She has epilepsy and this is a seizure. She'll be okay."
I don't remember much after that except counting. If a grand mal seizure lasts too long, it can be damaging to the brain so I was listening to everyone around me freak out and I was just trying to count. After only 40 seconds, the seizure stopped but Beth couldn't keep her eyes open. All I wanted to do was get her out of there and get away from everyone staring at us and panicking.
My purse was on the counter above me and I asked if anyone would please come over and pay for my packages so I could pick her up and leave. And some obnoxious jerk laughed and said, "Yeah right. Will you pay for my packages?" I was stunned. I told him to take MY money out of MY purse and pay for it. I even asked the clerk to take money out of my purse and she refused.
She had already weighed and stamped my packages so I had to pay before I could go. I remember standing up to pay her in silent fury and having to leave Beth on the ground. I think I threw my credit card at her, picked up Beth, and she must have handed my credit card back on the way out. I got out to the car, put Beth in the back seat and stood beside her while I dialed the neurologist.
Epilepsy had just gotten very real.
*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. :)