mrg_111

Thank you so much for all of the advice! I looked at the Swedish study as well as some of the more recent work done by Dr Cunningham. I’ve talked to my parents, who already agreed to do the Cunningham Panel, about the possibility of consulting with someone who has experience with PANS instead. I feel like this would be a better use of money and provide a more definative answer. We are going to talk to my psychiatrist on Tuesday and discuss this further. This stress of all this is starting to get to me and just want to know how to best proceed in treatment.

Thank you for the advice! Unfortunately, despite being quite an experienced psychiatrist, I’m the first case where he has even seriously looked into PANS. He definitely does believe that in and the treatments (antibiotics, IVIG, etc) though. That’s interesting about the Cunningham Panel. I’m curious why the study’s results are so contradictory to all of the extensive research they did in developing the test.

So my psychiatrist and I have been investigating the potential of me having PANDAS/PANS. I was diagnosed with OCD at 9 and anorexia at 16 (17 currently). My OCD was pretty quick onset and I’ve had a waxing/waning course of symptoms my entire life. I’ve had pretty high anxiety in general all of my life (predating OCD) and somewhere in my childhood I developed urination problems (frequency, leakage). I recently had some blood drawn to check white blood cell counts, IgG, ASO, pneumonia, lyme and EBV and they were all within normal limits. DNase B hasn’t come back yet. It’s been pretty discouraging and my psychiatrists says that things are pointing towards a no for PANDAS/PANS. I think we might get the Cunningham panel regardless of what DNase B is just to know for sure. I’m curious to hear anecdotes about people’s experiences with these labs. Thanks!