Our child was severely ill with most of the symptoms of PANS. I made it my mission to get her
well. I read all of the literature available and we took her to 17 doctors. She did not respond to traditional
treatment. She was on a variety of SSRI's and did intensive CBT/ERP with a Roger's trained psychologist. We did more than the 20+ recommended sessions (as recommended by Marsh in POTS II) when the doctors felt she was well- enough torespond to it. She did not respond. She was a 32 on the CYBOCS scale. Rogers let us down at that time and multiple times after that when we went there for care. I continue to be in regular contact with some of the providers at Rogers. I was hopeful after reading about the in-service
that you and your colleagues had at Rogers last week, however, nothing has changed. There is no understanding of PANS at that facility whatsoever and they have not opened their minds to the fact that the
body's functions are related to the brains functions. If they are treating any patients with antibiotics, it is at the advice of an outside PANS practitioner. They are not treating with IVIg. They even need to call in a lab from another hospital just to get a blood draw from a patient. One of the psychologists we see told us that
some of the sickest kids she's ever seen atRogers were the ones who had PANS.
The day after our daughter had her first high dose IVIg, shewas 80% improved. Does traditional OCD
just go away? Only God would have known if IVIg caused a placebo effect and mind you, we didn't care if the placebo effect helped her improve so dramatically. We would have paid anyone that sum of money to get our child well. Our life those next few months changed. Our little girl came back. We had to have IVIg one more time 18 months later and it helped her again to the same extent. She is almost perfect now, but we did not get that help from Rogers. Rogers let us down in a huge way. It is a beautiful facility in a beautiful location. I'm sure that it is “the” place for many anxiety disorders, but the doctors there cannot help a child with PANS