Erica - posted on 01/11/2014 ( 1 mom has responded )
I am looking for someone, somewhere to help point me in the right direction, how to deal with this very new diagnosis and refer me to a really good support group. All the information I've found are redundant. I know the specifics of this syndrome but can't seem to find one professional to tell me what to do now!!! I'm very frustrated and concerned. Thank you.