A New Rash

We noticed this morning that Annie has developed a rash over her whole torso. By this evening, it had spread to her arms. This kind of rash is a somewhat common side effect of the phenytoin, after being on it for a while. Ironically, we had decided yesterday that we would start weaning her off of it today, before we knew that a rash would develop. The prescribed wean would take a full two weeks until we could completely stop the phenytoin, but now with this rash developing, we suspect we might need to do a faster wean. We'll be in touch with Annie's neurologist tomorrow to figure that out.

Even after having only one lower dose of the phenytoin, Annie has had more seizures this evening. We're not sure if they would have happened anyway, or if they are due to the drop in phenytoin. A risk of stopping phenytoin too quickly without weaning off of it slowly, is that Annie could more easily develop seizures. So we may need to find a different seizure medication to take its place until things stabilize.

We had hopes of Annie returning to school on Tuesday, but we're not sure if that will happen. They probably won't let her come to school if she has a rash, and if her seizures are increasing, it's best if I can monitor those with her at home. We still have her school IEP meeting scheduled for Tuesday, so we think we'll keep that in place just in case, and then her IEP will be ready for whenever she does return to school.

In better news, Annie slept through the night last night, for the first time in 2 1/2 months! We also attended church as a family for the first time in that length of time as well. Annie is still far from 100%, but Justin spoke in church today so we all wanted to go hear him. He was asked to talk about Annie to help the congregation understand her Aicardi Syndrome diagnosis, her abilities, how to interact with her, and some of the things we have learned from raising her. I was worried that I would have to sit in the foyer with Annie, so I decided to record the audio from his talk. I'll have to ask Justin's permission, but I may try to share it here on our blog, since he did such a great job.