A rash of bad luck

Hardly 48 hours into my 'look on the gr8t side of life' blog launch and already I've encountered a major challenge. Our oldest daughter, who is nine, has epilepsy. Since her birth, we've been trying to control her seizures with medication, diet and have even considered a few therapies that fall on the far side of alternative (hyperbaric oxygen therapy, anyone?). About nine months ago, we began a new medication that showed great promise. The only hitch was that we had to be very vigilant to make sure she did not develop a rash, as this is a sometimes fatal side effect of the medication, Lamotrigine. She had actually tried this medication when she was about five years old, developed a rash within the first week and had to come off of it immediately. This time around, we began with really low doses of the medication last summer, and ever so slowly increased them to give her body a chance to get used to it. She has been doing very well on the medication and we are almost up to our recommended dose now.

You know what's coming next, right? This morning as she was getting dressed, I noticed some spots on her leg. I called my husband over and we discovered that she had spots all over her right leg. Not good. He took her to Children's Hospital (the only place we take her because of her complicated medical history, plus they have a neurologist on call -- and did I mention it was Sunday?). Anyhow, it was a tense couple of hours as they did blood and urine tests to try and figure out if the rash was caused by the medication or not. If it was the medication, we'd have to stop cold turkey, and we were worried about what would happen with her seizures AND if we could even find another medication that would be as effective. We've been on half a dozen medications over the last 9 years, and this has been the best one, so you can understand how much was at stake. Luckily, the tests indicated that the rash was not caused by the medication. We have a follow-up appointment with a dermatologist tomorrow or the next day to find out what it could be -- hopefully something 'normal' like chickenpox!

We're so thankful that this rash turned out not to be caused by the medication, but it really does put in to perspective how tenuous life can be when you've got a child with health concerns. It could have easily gone the other way, and we'd be stressed out this very minute about how were going to find another treatment that was as effective for her. I guess, though, we would have just dealt with that if it happened. It brings to mind this great sports quote (and I have no idea who said it): "In life, you can't choose what position you play, but you can choose how you play it."