Thursday, May 2, 2013

Anti-Epileptic Meds: Damned if You Do, Damned if You Don't

After discussing the results of his abnormal EEG, the doctor recommended Keppra for my youngest son. I talked with a couple of parents whose children took Keppra and I visited various epilepsy boards. The common theme was: be aware of "kepprage", which is extreme irritability and anger while taking Keppra. So, I watched and waited. Maybe it was a self-fulfilling prophecy or maybe I saw what I wanted to see. (I'm trying not to swear anymore, so please forgive this next sentence.) But holy crap on a cracker...what happened to my sweet little boy? You can't tell me this is merely puberty. After 3 weeks of having him on this medication, I was done. I was done with the scratching, the yelling, the hitting, and the tears.

I called the neurologist's office with my concerns and asked for other options. The nurse recommended doses of vitamin B6 to combat the irritability. In the meantime, she would send a message to the doctor. Fine. I got some B6 and magnesium and put them in my son's nighttime pudding. The following morning, the nurse called again saying that the doctor had written a prescription for Trileptal. Both Trileptal and Keppra had to be taken simultaneously for two days after which we could discontinue Keppra. Hooray! Or so I thought.

The patient advisory leaflet for Trileptal contains warnings for the usual side effects such as: constipation, dizziness, fatigue, nausea, vomiting. Nice. It also contains warnings for: double vision, difficulty speaking, (I had to laugh because my son is blind and nonverbal. Bad form, I know.) difficulty concentrating, loss of coordination, difficulty walking, and low levels of sodium, which ironically can produce more seizures. Hmmm, you don't say. Yes, but what are the odds that he'll experience these side-effects? Well, I don't know. However, I do know that the odds are not as low as zero. When he was an infant, he was taking phenobarbital and Topamax. He was a zombie. It wasn't until he started the ketogenic diet and came off those meds that we started to see him make progress. Seriously. While on Keppra, he was angry and irritable. These meds are not to be toyed with.

I immediately realized that I was damned if I did and damned if I didn't. If I decided to continue medication, there would most likely be side effects. If I didn't do medication, there would most likely be more seizures. Either road can have serious consequences. This morning, my husband and I asked ourselves, "Is it worth it to medicate him if he only has a few seizures a year?" This is a question that is difficult to answer. You see, I had a co-worker who died during a seizure. It was only her second seizure. And she was taking medication. I think a better question would be, "If this happened to your son, can you live with the fact that you didn't try to prevent it with meds?" For me, the answer is, "I don't know." I'm not saying that to be flip. It's a no-win situation that requires careful thought and consideration.

For now, we're going forth with Trileptal. As with everything, it's in God's hands.

For I am the Lord your God who takes hold of your right hand and says to you, "Do not fear; I will help you." ~ Isaiah 41:13

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