Well, we now know that Luella should not go swimming - at least not at our indoor pool here in town. We all went swimming this afternoon and within five minutes of being in the water Luella had a seizure. Last month we went swimming and she had a seizure there too but we weren't sure if the pool provoked it or something else - now we know. :-( This seizure took two doses of her rescue med to stop. Jim was ready to take her to the ER, thankfully we didn't need to.
I think it has something to do with the fluorescent lighting in there or a combination of that and the water. She was looking around the pool and once her eyes focused on the lights, the seizure started. We've been swimming there before without any problems, but with Dravet, nothing is constant. Things are always changing. That's one thing that makes this disease so frustrating!! If we could just get to a point where the meds were working and we could be "good". But you can't. We need to pray hard for a cure for Dravet. There are people out there working hard to do that. Please pray that they have the knowledge and the money they need to make it happen!!
The Dravet Syndrome Foundation (DSF) (http://www.dravetfoundation.org/) is the place to donate money to help fund research to cure Dravet.