PandaEverdeen

Dr. Roy Steinbock at Mindful Family Medicine (Boulder, CO). Treats PANDAS/PANS/BGE. This man saved my life. I ended up having viral encephalitis, not PANDAS, but this man will dig into your case and do the research to make sure you get the care you need. The best doctor I've ever worked with. Caring, takes the time to listen, and extremely knowledgeable.

No, not at all. I took the Cunningham Panel at the very start of an exacerbation, when I was taking antibiotics, and my levels on four antibodies were comparatively low. Since your PANS was being treated and your symptoms were abating, that is likely why you didn't have high levels of antibodies.

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 became stronger later in my childhood (8-9 years old), this does not sound like Asperger's/autism spectrum disorders. While some of the symptoms become more apparent in the teenage years, I've never heard of them being abrupt-onset or becoming more apparent this drastically, as you said. I would suggest you seek out someone who treats PANS/PANDAS/basal ganglia encephalitis. They can run tests that would have a better chance of finding infections-PANS kids are notorious for not showing "normal" signs of infection, e.g. a sore throat for strep infections. There's also the gold standard test for PANS/PANDAS kids, the Cunningham Panel, that could be run.

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/

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 conclusive for diagnostics in most circles is the Cunningham Panel. It is well over $900. Most PANS doctors diagnose based on symptoms alone and proof of a recent illness that triggered it. For some people that might be a throat swab positive for strep, for you it might be the history of the stomach bug going through the family. Does the specialist treat PANS/PANDAS/immune-mediated encephalitis? I would suggest finding someone who either treats immune-mediated encephalitis, or lists PANS specifically as a condition they treat. They would be able to tell you what tests they suggest running, what they are looking for, and then target treatments based on those tests much better than just a neurologist who probably has a surface-level knowledge of the disorder. Was the Lyme test a Western blot test? It's received a somewhat lukewarm reception in PANDAS circles, on the grounds that it's not very reliable, especially for someone whose immune system is possibly already compromised. Igenex Lyme testing is considered more reliable by PANDAS Network in their diagnostic tests section. About the strep test: it's a possibility that your daughter maybe had strep during one of the first onsets, and the stomach bug triggered the mechanism again. Here's a really good article from PANDAS Network that explains the strep testing, and how it isn't always accurate (and how strep can show up in places besides the throat): https://pandasnetwork.org/understanding-pandas/diagnosis/ (There's also a good list of bloodwork for other PANS triggers and overall blood testing that is sometimes suggested by doctors.) I would hesitate to rule that out based on just one strep test alone.

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.

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, if you want to take a look at it. https://www.moleculeralabs.com/ There's a neat video on their site that shows exactly what's going on with your immune system and brain in PANS, too, if you are interested in that. To get treated-I saw above you said there is no PANS doctor where you live. Not all doctors that treat PANS list it on their site-one of the doctors that has treated me specializes in autoimmune diseases, but still had experience with PANS. You might call around to integrative medicine doctors or naturopaths in your area-there seems to be a higher amount of doctors willing to treat PANS in the integrative and holistic community. If that fails to yield results, there are some PANS doctors that will allow you to do Zoom or Skype visits. Usually they want the first visit to be in-person, but if you called and told them about your situation with the state borders, they may make an exception. As for your actual treatment options, here's a really good overview from both the PANDAS Physicians Network and PANDAS Network that outlines what most doctors will go by. Some doctors don't follow these guidelines exactly, but these are the general options most of them suggest to their patients. (There are a lot of alternative treatments out there, too, in the holistic or integrative communities. Google search turns up a lot of these options if you're interested in looking into them.) https://www.pandasppn.org/treatment/ https://pandasnetwork.org/understanding-pandas/treatment/ Also, I saw your question about getting tested for the trigger posted above. It's extremely likely that if you're still having symptoms, whatever bacteria or infection caused them is still present in your body, even if you have no symptoms that would traditionally be associated with that infection. (E.g. as far as I'm aware, very few PANS/PANDAS patients get fevers, and some of them do not present with a sore throat or rash with strep and scarlet fever. They just have a flare in their PANS/PANDAS symptoms). Here's a page from PANDAS Network that explains some common infections associated with PANS, and the tests that might be run: https://pandasnetwork.org/understanding-pandas/diagnosis/ Some PANS/PANDAS patients request strep titers tested, even if they have no traditional strep symptoms. Not everyone with PANS has high strep titers though, so it isn't a foolproof test. It can be a starting point, though, especially if the patient improves after antibiotics are given for high strep titers. As Cmac said, it's very worth looking for environmental triggers as well-mold, for instance. However, the way you describe your 3 symptom flares makes me think that your main PANS triggers right now are probably infectious/bacterial.

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 extract, allicin, etc), 1000 mg/2x day Augmentin, and 250 mg/1x day Zithromax (Zithromax appeared to work the best. For 24 hours.) The symptoms respond the same way to everything (unless they don't respond at all): I start getting better for 2 days, have a really good day or two, see a decline the day afterwards, and the flare is back. It all happens within 3-4 days on every single antibiotic I've tried, and makes no sense. The flare symptoms get worse every time an antibiotic stops working. Complicating factors include that my doctor and I suspect I have Lyme and/or babesia, my thyroid swells when I have a PANS flare (not sure if it's related, but I thought I'd mention it), and I have a recurring sinus infection that comes back when the flare does. I strongly suspect the sinus infection is strep, but nothing seems to kick it out. I am on a Lyme protocol that includes a biofilm remover and a cyst buster, so that is not going untreated. (I had a terrible herx the first time I introduced each Lyme protocol component, but as it stands now I'm at maximum dose for each component with no herxing and no improvement in PANS symptoms. However, if I quit the components of the Lyme protocol, PANS will worsen, so it's doing something at least.) Any help would be greatly appreciated.