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Beachykeen

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  1. Hi all, Four of us have PANS in this household (me + my three children). I have noticed a massive uptick in flares beginning mid-October. This happens every year - I can trace it back at least 4 or 5 years. (My oldest is 7). The most severe PANS flare I have had personally (past my teenage years) started precisely at the beginning of December, 7 years ago. I understand that this is when viruses/bacteria become more widespread, school is back in session, allergen levels are up. My kids and I haven't had a single environmental allergy show up on blood tests nor do we have any typical allergy symptoms. (Unlike my husband who has major allergies). And it is hard to believe that, like clockwork, every year, in November, my kids have completely fallen apart. It is a drastic, drastic difference from how they are in Spring and Summer. I have heard that SAD/seasonal appearances can be related to Babesia. Anyone know anything about this? All of us harbor massive viral loads so I suppose it could just be a reactivation, but what, exactly, is causing that to get SO BAD beginning in October/November/December? We are on all the same anti-virals we use the rest of the year. Any insight is most appreciated! thank you!
  2. How many of you/your kids have high EBV titers and/or chronic active EBV infection? If so, how have you treated this? Have you found it helpful in improving the overall PANS symptoms picture? Thank you!
  3. Has anyone used LDN for PANS in their children? If so, did you notice any immediate side effects? What were the long-term results of usage? Thank you!
  4. Two of my children were just diagnosed with PANS/PANDAS (not certain of trigger(s) yet). They were both "slow onset" (although my daughter has had symptoms for as long as we can remember). I have a third child (age 3) who is showing some signs of PANS - anxiety, extreme insomnia, aggression, peeing in his diaper again at night after being dry for a while now. My question is - is there any way to prevent PANS/PANDAS? I am so desperate to do anything I can to prevent this from happening to him as well. We eat VERY clean - always have - he's on some methylation support, etc. Thank you for any advice or thoughts you can offer.
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