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PandaEverdeen

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  1. The short answer is yes, this sounds exactly like PANS/PANDAS. There is a great deal of anecdotal evidence of kids with this disorder that had issues before, but had a period in their life where the symptoms just blew up. (I was personally one of those kids.) I wouldn't rule it out based on the negative strep test. Here's a really good explanation from PANDAS Network about diagnosing PANS/PANDAS, and how negative strep tests don't necessarily mean the absence of strep. https://pandasnetwork.org/understanding-pandas/diagnosis/ I have Asperger's, and can tell you that while the signs of it
  2. Certainly! Glad I could help. I looked around online, and as far as I can tell, any kind of Lyme blot test is considered the Western blot. I guess different labs just refer to it differently? Here's a good link that explains the different tests, and which bands on the Western blot carry more significance. https://www.lymedisease.org/lyme-disease-test/
  3. I've heard of several other PANS patients (including me) have small flares that no one recognized in childhood, much like how you mentioned your daughter's behavior at 6 and 8. That, and the onset after illness, are the primary things that makes me very suspicious your daughter does indeed have PANS. Most pediatrician/family doctors are not very familiar with PANS, its many triggers, and the complex way strep hides in the body, and will take a negative anti-streptolysin O test as a sign of "no strep, no PANS". ASO can be a helpful test in diagnosing PANS, but the only test that is considered c
  4. Good to hear you've found a doctor who is willing to run tests. It is entirely normal as far as I know for ibuprofen to not reduce symptoms entirely, except in very mild PANS/PANDAS cases. I recall reading about a doctor who diagnosed based on reduction of symptoms after a course of NSAIDs, so it seems to me there's a high likelihood the test will come back with some type of a result.
  5. Butterfly-that sounds like classic PANS to me. I think you're exactly right. No, you do not need another sudden onset of symptoms to be diagnosed or treated. (Some PANS patients don't even have sudden onset.) Many doctors will diagnose based on medical history alone, as you said, or if you are interested in being tested, the Cunningham Panel by Moleculera Labs is considered standard for PANS. They do run tests for those living outside of the US, but the test is costly, usually around $900 (and that was for patients in the States, I have no idea what it would be in Australia). Here's their site
  6. Hello there, I was diagnosed with PANS through the Cunningham Panel in January of this year, and at that time had gone into remission after starting a course of natural antibiotics a naturopath prescribed. I was instructed to increase the dose of the antibiotic by 5 drops every 5 days, and it worked fantastic. (I'm still on that antibiotic, although I've reached the maximum dose I can be on for it.) The flare returned in March for no apparent reason, and has continued for almost seven months. I have tried numerous natural antibiotics of varying doses (grapefruit seed extract, wormwood ext
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