I was doing a survey for NIH and at the end it had two links where you can go for help. One of them was for genetics testing - which so far this is not genetics. The other was for SWAN - Syndromes Without A Name. I went to their site and it's very cool. I immediately joined up and found them on Facebook so I could stay up to date.
Even though we have a diagnosis or whatever it is - I think this is a great place for us mom's to join and check out. After all - a syndrome is just a big group of symptoms.
Our doctors told us before - they don't care what everyone wants to call the syndrome - they can call it Haven's Syndrome if they want. The most important thing is to stop her from progressing and give her a long life.