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  1. My DS might be considered shy during a flare, however it’s more like, withdrawn, than shy
  2. How old is your daughter? Is she on antibiotics or or nsaids? I don’t know if the pain is a physical manifestation of her anxiety.... I know some other kids have stomach pain. Did the pain start after the fear of throwing up? Sorry you’re going through this
  3. Hi patty. We did and do find it helpful. It definitely doesn’t take away full flare anxiety but works like psychotherapy/CBT. It has definitely been helpful giving us language and supporting my son between flares. How old is your daughter? What else have you tried?
  4. My son only had leg pain when he also had Lyme & bartonella. I think it was a symptom of his infection rather than the PANS. Also, for us, stomach issues were just a symptom of anxiety. Not sure how prevalent these physical symptoms are....
  5. Hi bws1565, we used homeopathy several times. The first time was at the end of a flare and it was extremely successful in helping my DS with anxiety and sleep. However, we were never able to repeat the original results.
  6. Hi lyentzer, So sorry to hear that your son's headaches have returned. My son (also 8.5) had headaches and stomach aches in the evening, but they were due to extreme anxiety. Could his headaches be anxiety? He couldn't really tell the difference. At that time he was also having panic attacks. Is he having other symptoms?
  7. We just completed IEP process for my DS8. My rather basic understanding is that an IEP is preferable for long term situations. It’s the accommodations that were more important to me m- that they be in place permanently so that they are there when he needs them. Much of the accommodations above plus typing, speech to text and/or a scribe. Is your granddaughter taking Aleve? It’s not a cute, but helps us. Also epsom salt baths.
  8. What your specialist said makes sense to me in light that my DS’s PANS symptoms got worse each year after onset. If we’d caught it earlier and begun prophylactic antibiotics, perhaps he wouldn’t have continued to get worse to the point where it doesn’t seem to respond seem to respond to antibiotics at all. It’s so hard because it seems like each kid is different, but if I could go back and begin antibiotics during his first flare- of course knowing what I know now- I would. And I’d keep him on them for a long time.
  9. I do low sugar and no gluten. I'm not seeing these things helping. I'm so at a loss!
  10. This is very interesting! Thanks for sharing. Curious how they stimulated the nerve in human subjects....
  11. WorriedMom, Did your daughter have an issue with strep? My son doesn’t seem to.... are they doing this for kids without Strep related flares? I will talk to his doctor about that. Glad your daughter is doing better!
  12. Dasu, I’ve thought about homeschooling- but I can feasibly make it work financially. Wish I could. I also can’t fugure out why his flares last so long. thanks for your response.
  13. My son (8yrs old) is beginning his fifth year with PANS (Lyme, etc). However, it took us four years to diagnose and he’s been treated with antibiotics for the past year. Each year he began flaring in December/January- until mid summer. Each year by August he’s like a different child- until the next flare begins. This past year, with antibiotics, things were no better. There were new symptoms- fears of contamination and poisoning, and more. Just before school started this year he had a cold and he began “evening” for the first time since last winter. His fears have begun to return. He also has says that he gets invisible arrows in his body and has to pull them out and “throw” them away. I often see him doing invisible things. I’m terrified of what we have in store this winter. Why doesn’t he get better with all the supports he has in place- antibiotics, etc? What do we do next? What are we missing? Does this ever end?? I feel like I get one month a year with my child and it breaks my heart. Thank you for your thoughts,
  14. My son has absence seizures during flares. He just sort of "disappears" for 30 seconds or a minute, many times a day. During those "absences" he can't respond. Sometimes when he "returns" he will shake his head as if to clear it.
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