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Showing results for tags 'PEX IVIG PANDAS PANS'.
Ive been cruising the posts, most are years older, re/PEX recovery. But what I keep seeing (selective reading perhaps?!) are comments about immediate and/or major improvements seen with in days for PANDAS kids. I didn't go into it with set expectations but I sure didn't think it was going to throw DS13 under the bus! DS13 is 19 days post treatment (3 consequtive days at GTU) and he feels worse than ever! He hasn't been jerking and ticing like this for months, even when he's sleeping he's jerking now. He started feeling awful about an hour after day1's treatment....I almost couldn't get him back on board to keep going it was so bad for him. The only thing that hasn't escalated is the super nutty schizophrenic behavior he had when he was raging with Strep. The depression, tics and itching sensation are all sky high now, and obviously he was already in bad shape or we wouldn't have hauled him to GTU (from WA) in the first place! Has anyone else experienced this, a MAJOR backward slide before going forward? His last two steroid bursts were brutal on him, but he eventually returned to 'pre-steroid' levels after stopping them. I never would have given him steroids if i would have understood the potential to exacerbate tics in PANDAS kids was so high. I feel like everytime I sign him up for a 'helpful' therapy I end up kicking him in the head instead. At the very least I want him back to his regular awful, right? I am trying to convince myself that SOMETHINGS happening or he wouldn't feel worse...IVIg didnt do anything (that we can associate with it. Maybe they helped a bit over the long run but its hard to know). And maybe PEX won't do anything for him (please let that NOT be true) and he will go to next therapy (Rituximab) but he's been through so much, it's his turn to have some positive results. I'm trying to get my arms around some type of expectations. He's older, a tic/Anxiety presenter and fully hit puberty at same time as major exacerbation 12/2011 so he's a tough case, I get that. I so want to get him some relief, even just some decrease in the itching sensation would be a huge impact. Thanks for letting me vent and for offering your understanding of how this works, it's very appreciated. ET