theotherbob

Maria, this sounds like great news. Having a good day is a great sign. With my daughter, we were in a situation that sounds a lot like yours, where these precious moments of being almost back can pop up, but then it slips away. For us, the recovery has not been a straight line. I know exactly what you mean when you say the hole that is very dark and deep. We have had some good periods, and we thought it was over, and then it went to again. But, the good periods keep happening, and I am sure it will happen with you. Just keep hanging on, it gets better.

From everything I read, there is a very good change that it does improve a great deal for most kids, to the point of it just not being an issue. by all means, talk to your doctors, it sounds like you are getting great care, and they certainly know how hard it is for parents to deal with this.

My daughter just went through IVIG, to treat a PANS diagnosis. Before that, they did an EEG, and MRI, and everything looked just fine in those tests. They thought absence seizures might be a cause, and that was definitely ruled out by the EEG.