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Feel like being a detective? Quick recap: PANDAS morphed to PANS. Did well on antibiotics. Remission X 18 months, Managed well for years until in seventh grade - we began with monthly flares with monthly sinus infections. Found to have elevated tissue transglutaminase. Removing gluten and dairy was a huge help to us and helped us back into remission. Now with the start of high school, we are flaring every 6 weeks again - clock work. 1-2 days before flare: flushed cheeks (he is fair skinned and always pink) but during a flare his cheeks are bright red (we try to avoid food dye and as said we are gluten and dairy free). Have not been able to find direct link to anything else causing the flush (i.e salicylates...) unusual body odor (one or two days prior to the flare he smells more pungent - moreso than a normal 14 year old boy!) increased kinetic energy increased water consumption and increased urination Flare: (7 days - day 4-6 are the worst!) Insomnia - horrific headache OCD primarily obsessive thinking severe constipation and thus obsessive thoughts about weight and BM's food refusal dramatic energy decline horrible brain fog mental and speech processing dramatically slows 1-2 days Post Flare: Spacey and a little goofy for a few days as he searches to get his brain back. Motrin helps some. Azith used to help alot but now seems to make his mental fog worse if we give it during the flare. Western Blot in 2011 showed one band IgM 23. BUT subsequent years of testing has been negative for lyme and all coinfections. Titers for mycoplasma and strep are low as well. He does have chronically swollen nasal turbinates -- but has not had an infection in quite a while (as opposed to 7th grade when it was every month). We are dealing. We are managing. He is growing and maturing. But why the cyclical nature?
