After getting back we could not stop thinking of Vegas. So in November 2004 we decided to move out there. Even though we do not live there now, it was the BEST move. In Jan 2005 our neurologist there in Vegas, linked everything together. So we started test for battens, things kept coming back negative. In Feb 05 Nicholas had two big seizures and since then he has tremors. Come July an he is getting to be a handful. It was a big strain on us, so we decided to move back to Florida where we have family support.
So in Aug 05 we moved. This time we had a lot more information. We got our doctors here to keep testing for batten's. With the help of Nancy and Lance at BDSRA, it was confirmed in Dec 05 that Nicholas has Juvenile Batten's Disease ( JNCL ).
Even though we had a thought it probably was batten's, it was so very hard to hear someone tell you that. I am glad that we were here where family is close, it would have been 100 times worst without close family.
Our Florida Chapter for Battens is here in the same town. Karen Upchurch has given us a lot of info. Her two daughters went to school here, so we are trying to get Nicholas in the same school, since they have had contact with other children with this disease.
