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MamaV last won the day on January 7 2017

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  1. Oh, and the very knowledgeable doc who finally diagnosed PANDAS in my son explained that strep tests (even blood tests) have significant error rates (i.e. false negatives), as do others, and our kids may react to such small exposures that tests can't detect. It is a clinical diagnosis. This seems to call for some trial and error with antibiotics.
  2. Oh wow - sounds similar to my son's second flare at age 6 (first flare at age 4 not recognized as pandas). Overnight symptoms so familiar - the hoarding, having to do things symmetrically, worried everything was poison, fits of rage, extreme separation anxiety, wouldn't go to school, extreme sniffing tic... It's amazing to me that PANDAS is still being dismissed or overlooked with this classic presentation. My son didn't have any illness that we knew of prior to second flare - he tested negative for everything. Still, looking back I can't believe I didn't see PANDAS or PANS more clearly. My
  3. What a roller coaster. I just want to commiserate on the finger licking - has been one of my son's main symptoms too, and just the same whereby he touches something and thinks he has to lick his fingers. He explains this is to check and see if what he touched is poison. Ugh. We are just about to start with Biocidin, though because my son tested positive for clostridia he is supposed to take 8 drops 3x/day, and he is about the same weight as your son. Hmmm... My son's symptoms seem pretty well controlled by antibiotics (currently Azithromycin) and we will try weaning off either during or
  4. Hi to anyone familiar with 23 and me testing! My son, age 7, has a pandas diagnosis. First flare at age 4 lasted about 5 months, better for 1.5 years then flared again at age 6. Since then I think we've had a few weeks of back to baseline but when he gets sick we're flaring again. On functional doc's advice I went ahead with 23 and me test to look for underlying methylation issues. I just put the results into 'genetic genie'. I was avoiding any other health info for now as I don't need additional worries, but thought methylation results would be ok. Well, it's telling me he has one heterozy
  5. Dr Wilson has been a wonderful help to us and to many other pandas/pans families I am in touch with in BC and Praries online groups. I mentioned this a few weeks back (Canadianmom) and you thought perhaps she couldn't help because she's in BC, but she does indeed work with families around the country. i am so grateful for her...
  6. Oh and she can order some tests (at least in BC) though you will have to pay. Kids may have strep infections that don't manifest as sore throats, and other infections can trigger PANS, so Dr. Wilson orders tests if she suspects PANDAS/PANS
  7. Hi there, I am also a Canadian mom. It is difficult to find doctors who are familiar with PANDAS/PANS. Fortunately there is a naturopathic doctor in BC who specializes in these issues - Dr. Ayla Wilson. She is very well regarded and many families across Canada (including mine) are working with her. I'm aware that she attended a conference last year in Saskatchewan where the expert American doctors were also present (Dr. Swedo and Dr. Murphy). She has a facebook page called 'PANDAS treatment Canada', and also a website (just google her name). She does phone consultations and is proba
  8. Thanks - I actually got myself tested for lyme last year (by igenix) and results were negative. I guess I should pursue this for my son too. Ugh, I wish it were all more straightforward. I wish there was better guidance and help. Exhausted...
  9. Hello, Writing about my six year old son. We are trying to rule PANDAS/PANS in or out. Any thoughts from experienced families appreciated. I recall a day or two of a blinking tic when my son was maybe two, perhaps a bit of throat clearing too, but nothing very intense, he has tended to be a bit phlegmy. Otherwise a very happy, healthy and typical kid! On Dec 01/2013 (at age 4) he was suddenly different! He had sensory issues, anxiety, tics, mood changes, un-focussed energy and started twitching and jerking in his sleep. Yet somehow he was still mostly functional and continued at da
  10. Hi, I have a severe form of an autoimmune disorder called alopecia areata (universalis) and my C-reactive protein always tests normal, so clearly a normal test doesn't rule out all types of auto-immunity.
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