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Thank you so much for your reply. May I ask, what led you down the path to his Crohn's diagnosis?

Hi gingermom Hopefully someone with more PANS knowledge stops by- but I just wanted to welcome you, and say that I am thankful there was that relief from the ibuprofen. fyi CVS has their own brand 200mg dye-free ibuprofen (we have always avoided food dyes) My son dealt with Tourette along with intense OCD, and we do suspect a PANS component, but this was many years ago-but we also used a natural anti-inflammatory by NOW called Boswellia extract that has Boswellia + Curcumin. Our Integrative MD also suggested Olive Leaf Extract as a natural antibiotic, and you will find other posts about it -sometimes abbreviated OLE - I do hope you find the info you need to help your daughter.

Hi KSandy It certainly sounds like you are following a good track! I don't have enough personal knowledge to comment on specifics for you, but I do know my son (dx TS with likely PANS component) showed tremendous improvement with cleaning out Candida albicans! We used capsules by NOW called Candida Support (used to be called Candida Clear) and had good results. As Candida is fungal (also sometimes called "Yeast overgrowth") I know some of the prescribed antifungal liquids have had mixed reviews. My son's OCD always ramped up when his GIT wasn't happy. He still uses plain natural organic kefir as his probiotic, as he did not respond well to those probiotic supplements. He was subsequently diagnoses with Crohn's disease, which explained some of the inflammatory gut issues. The Integrative doctor started him on NOW Boswellia + Curcumin which he still takes and finds beneficial to both GIT as well as neurological impacts. We know the brain-gut connection all too well, so always advocate for the treatments that aim toward healing both. We found regular medicine just doesn't address that, and frequently prescribed treatments just upset the balance and result in new issues - at least that was our experience. So kudos to you for following a holistic approach. I do hope your daughter will heal well.

The progression of her treatment was as follows. Amoxicillin (failed), Azythromycin (failed), Cefdinir (failed), Prednisone (failed), IVIG Monthly with Cellcept (some improvement), IVIG Cellcept solumedrol (improved then failed), IVIG Cellcept rituximab (improved then failed), IVIG Cellcept cytoxan (improved then failed).... then... IVIG (monthly) Cellcept (daily) tociluzimab (monthly) almost immediate, steady, staying improvement.