Off Topic

Since I wrote about my little guy's seizures earlier in the blog, I may as well keep it up even if it has nothing to do with library 2.0. He has been doing great. He is in kindergarten now and is really starting to read independently. Just last week he wrote a story about a robot. It was furry, cute and cuddly. (or as he wrote: free, cuet and cutily)So you can all see that his brain works just fine, thank you very much. He also sings, dances, tells jokes, is learning to play the violin, and throws the occasional tantrum.

Last week, after 3 months with no seizures, he had a mild one in the night. I woke up, sat with him until it was over, then we all went back to sleep. The next morning I went to work, and he went to school. I'm thinking, "No big thing. I can deal with an occasional twitching fit in the night." Then three nights later it happened again. It was slightly longer, three minutes instead of two, but the jerks were bigger and stronger than the past. It left me feeling scared and helpless again, like the first ones over the summer. The hardest part is that I can't settle in to sleep. My son sleeps on a single bed pushed up next to my side of the bed so that I will wake up if he seizes. My husband and 90-pound dog share my bed. They both twitch, toss, and make strange noises from time to time. And it all wakes me up. So I am grumpy, tense, and did I mention the PMS?

To add to my general level of worry, a close friend of mine has a daughter who is also epileptic. (This condition is amazingly common, once you start talking about it.) But her daughter is a very different case. She is older than my son by six months, but is developmentally behind him. When she was younger, I thought she might be autistic. She talks now, but still has some symptoms of Asperger's. We have suspected for quite some time that she might be having those mini absence seizures because she does check out from time to time. So her mom took her to Children's Hospital to have an extended EEG done, where they watch her brain patterns for several hours. Within a one-hour period, they recognized 16 brief seizures. Sixteen! The family had been avoiding medicating, but after that they decided they had to. Obviously her frequent brain storms are getting in the way of her development. But then she had some reaction to the medication that was life threatening. I didn't get all the details, just that if a rash showed up she should stop the medication and go to the ER. The rash showed up last week. And the mom has had both thyroid cancer and breast cancer in the last three years. So what am I whining about? Thankfully, she is doing great.