MOMOFTWINS_2

Has anyone experienced worsening of OCD and rage symptoms after plasmapheresis? We had to cut our plasma exchange treatment short after my son reacted badly to sedative and pulled his IVs. His symptoms worsened the next week and he is now hospitalized for a change in meds. His OCD symptoms are debilitating - worse than they were pre-plasmapheresis.

Hi, I am new to this board. I have an 18 year old son who was diagnosed with PANDAS after things got really bad....he was having rages and OCD and his worst OCD issue is that he needs to scratch his dad and me on the face...needs to see the scratch marks. We got in to do 3 rounds of plasmapheresis under sedation, but a doctor who was not completely briefed on our situation decided to remove the sedation because he talked to my son and he was "cooperative"....Long story short they put the sedation back in but he is extremely sensitive and he woke up and pulled out his ivs, so we had to leave the hospital after only one plasmapheresis treatment. I have a few questions: 1) Has anyone ever had success with only 1 treatment? We called NIH and spoke to Paul Grant and he said it is possible...If so how long until you saw benefits? 2) Is there anything we can do to maximize the benefit of one treatment? Supplements, low dose naltrexone? 3) I know I have read that SSRIs can be counterproductive with PANDAS. Since his OCD symptoms are so bad, does anyone have experience with any med that helps the OCD symptoms without adversely affecting the plasmapheresis or worsening the PANDAS situation? Thank you very much.