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DS is 17 1/2. His worst exacerbation was at ages 12/13. Two IVIGs at NIH got him back very briefly, after which he immediately got strep and had another exacerbation that was actually worse. Finally got him back, for the most part, after middle school. He functions at a fairly high level, but there is a continuous need to monitor symptoms and mess about with antibiotics and steroids every 8-10 weeks each time he is exposed to someone with strep and PANDAS symptoms start to re-emerge (OCD/paranoia/lying/refusal to eat/social challenges). Biggest challenge is that he barely eats even when things are at their best. At 6'1" tall but weighing only 125, he struggles with sensory issues and never feels hunger. We strongly believe the eating issues are brain inflammation related since he can eat a full meal fairly comfortably half an hour after taking a couple of ibuprofen. So here's the thing - he hopes to head off to college in the fall. But he gets strep every couple of months even on prophylactic antibiotics, and he frequently fails to eat even with alarms to remind him. We're thinking of pursuing plasmapheresis in hopes of getting him some sort of systemic reset. That being said, with multiple daily symptom checks and eating reminders, he is mostly in a good holding pattern at the moment. Since starting high school he has been an excellent student. And even though his social cognition waxes and wanes, he has been able to maintain friendships and participate in clubs & activities. Are we crazy to mess with the 87% positive that we have and risk jeopardizing it? We believe that without some sort of major intervention DS will end up losing the freshman 15 instead of gaining it, and end up in the hospital and out of college in fairly short order. Anyone with BTDT experience with plasmapheresis, I would appreciate your thoughts. Thanks.
