PANS and PANDAS are conditions that can be treated by several different types of doctors. If you are wondering what type of doctor to see, the answer is that it depends on the symptoms and severity of the condition. The…
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…
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.…