MamaV

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.

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 son has responded quite well to antibiotics! Pretty much tic and OCD free, though sensory issues, mood and hyperactivity will flare with illness - a work in progress. Good luck to you. Amy Smith is great

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 after biocidin protocol. All of these decisions are so hard, and it sometimes seems impossible to tell what is causing or helping what! Good luck to both of us! Sounds like we're both in Canada - great you have found a doctor who will diagnose and treat PANS

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 heterozygous MTHFR mutation but also MAO-A and COMT mutations. The write up on this second combo is very alarming and says he is prone to 'severe' neurotransmitter imbalances which can create neuropsych symptoms like OCD, mood swings, aggression and depression? Ugh. I don't understand this testing and will meet with the doctor next week but meanwhile if anyone has insight on how this may relate to PANDAS and more importantly if these crummy genetics can be mitigated i would love to hear it. I hold to hope we can beat pandas with ongoing treatment (we are using antibiotics but haven't tried anything else) but this genetic test is a blow to my optimism tonight.

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...

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

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 probably your best and fastest bet in terms of an opinion on whether your daughter may have PANDAS. Hope you find some answers soon.

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...

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 day care etc. He had an EEG and a sleep study. Both normal. Only discovered low ferritin. No one suggested PANDAS. He would always appear just fine in the doctor's office. After about 4-5 months everything pretty much disappeared, except the sleep twitching persisted at a low level. He was great for 1.5 years, though chewed and picked at his fingernails and a bit fidgety, but otherwise his lovely happy self. Then in October of last year (2015) the school started to notice some anxiety in him. And suddenly on Nov 01/15 he had a lot of OCD symptoms, along with a bunch of the stuff we saw two years prior (sensory stuff, rage, separation anxiety, general anxiety, short term memory issues, etc - but no tics). Things improved somewhat in December (and we had 3 sessions of CBT), then he got a cold in January and his intense sniffing tic of two years ago was back. We had a naturopathic doctor who agreed likely PANDAS or PANS, though blood tests in late December showed no strep or mycoplasma. We started antibiotics in mid January, and saw a flare in symptoms that lasted a little over two weeks. He has been doing ok since, but not great. The tic is much reduced, but he has occasional weird OCD symptoms, still twitching a lot in his sleep, and currently thinks he doesn't get enough air when he breathes (though his breathing is in fact fine) and I hear a fair bit of exaggerated breathing. He is managing it and still functional, but I can tell it's hard for him. It's awful to see my six year old dealing with this. I'm sure many of you can relate. I have appointments with a specialist this week, who may be able to give us more support in terms of diagnosis, meanwhile I torture myself wondering if this is indeed PANS or PANDAS, or am I looking at some kind of 'garden variety' (though early onset and complicated?) OCD/tic combo with few treatment options and a poor prognosis? I should mention I have an autoimmune disorder. We have no TS or OCD in the family. Does this sound as much like PANS or PANDAS as I think it does, despite the negative strep and mycoplasma tests? I am feeling discouraged that we haven't seen bigger improvement after 5 weeks of abx, especially since his case might have been considered 'mild' (as he was still fairly functional even at peak of both flares). Is it possible that the abx just need more time to work? Just trying to get as much info as I can, from doctors and other families. Thanks for any feedback.

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.