Plasmapheresis

[Cleopatra]

My daughter has had a PANDAS dx for 3.5 years since age 7.5. Had all treatments everywhere these past 3.5 years. After asking for PEX from every MD we have seen I finally found one who is ordering it. Dd got her 1st PEX txtmnt over Thanksgiving. I say tremendous improvements in her personality and anxiety, but, OCD (while diminished a bit) and tics remain so she is getting txtmnt #2 on Saturday. It's been 3 months. Her status is same. Looking for additional progress. Anyone here seen it after 2nd Plasmapheresis?

[LNN]

We did pex and within 6 weeks, DS was worse off. IVIG made him a lot worse. We eventually found lyme and mold were issues in addition to strep.

 

I hope the second time's a charm for you! But if not, you might consider other infections/triggers. My doctor's mantra is when the patient doesn't respond the way s/he should, you're missing a piece of the puzzle.

[Cleopatra]

My dd does' t have Lyme and we live in S. FL so mold is, literally, everywhere and there's no escaping it, but, I don't believe that is her trigger. Actually, after a point, the immune system doesn't need an actual trigger. It goes on autopilot and T and B cells just keep getting produced. We are trying to reduce those. My dd has been getting HD IVIg monthly for 3 years and does great with it. My doctor's all said the same as yours until we tested everything multiple times. It;s not always about a current infection or even a past exposure. Sometimes autoimmunity just happens...