DCMOM -- I am sorry to hear your children are still suffering. I am a PNP and have worked with a lot of PANS/PANDAS patients. The Cunningham Panel tests for 4 anti-neural antibodies and the Cam Kinase II. If the Cam Kinase II is elevated it means the autoimmune encephalitis was triggered by infection and the infection is still active. I am looking to find where it says in the literature to treat with antibiotics before during and after PEX (having a little trouble finding the source). If there is a high Cam Kinas II indicating an active infection, It is my impression that Dr. Cunningham believes you still need to continue to treat the infection before during and after PEX to prevent a relapse. I am unclear if Dr. Swedo agrees with this, but if your children are having relapses it might be something to look into. Hope this helps!
