PANS and PANDAS are two acronyms that you may have heard thrown around, but what do they actually mean? What is PANS? PANS is short for Pediatric Acute-onset Neuropsychiatric Syndrome. It’s a disorder that can cause sudden onset of psychiatric…
So a few months ago I posted about PANS/PANDAS Progress and ARFID Relapse. So now it looks like we have flip-flopped. He had his last IVIG in June and then went into an eating disorder treatment center in mid-July. He…
We’ve been battling two different conditions of PANS and ARFID at the same time. One progresses forward and then the other goes back. Treatment for ARFID is now requiring that he abandon the successful treatment for PANS. So my son…
So I’m sorry, but it’s been a while since I posted. Funny how this whole PANS/PANDAS thing just changes every aspect of your life and now you have a new normal. Except that my son has had this most of…
Not sure how it all happened. Honestly, I think it was a fluke. We went through so much to approve the original denial for IVIG to treat my son’s PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder…
So to catch you up. IVIG was denied. The appeal was denied. So we are still in limbo. I pretty much spent the last two months working on the appeal to send to an external review. I spent so much…
I feel like I am forging a path through the jungle. I have my machete, my bug spray, and a treasure map with a big “X” on it. But that’s it. No GPS. No voice telling me to turn left.…