Just an update.....e-mailed the NIH and of course they quickly replied and they haven't found anything new? They say they're still not done with the "rap up" from the original visit. The wife belongs to a few focus groups dealing with undiagnosed diseases and disorders and some of the other families who participated in the research program at the NIH were given answers around the one year mark from when they were there? At least it proves they truly do keep researching long after you're visit!
Still doing better on the new med to control the storms! Had one a week ago that lasted a few hours but that's been it! Might have been triggered from a few "pokies" he got? Been sick with either pneumonia or the flu almost every week! He actually got a nasty sinus infection last week! Can't get a whole week of school in?
Thanks again for the support!