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  4. My daughters pediatrician suggested the use of Zoloft (at a low dose ) for a temporary time frame. She is 14 and dealing with a lot of anxiety and intrusive and racing thoughts. She isn’t diagnosed with pans but is being evaluated in January by a specialist. Would it be helpful or harmful (if she does have pans) to use Zoloft. I am thinking through it with my spouse and her (since she is old enough) but am windiest specifically about any implications - good or bad - that it can have on someone specifically with pans/pandas.
  5. Thanks for all of your input! Very helpful I found and decided to take her to an immunologist instead who diagnoses and treats pans and pandas and immune mediated encephalitis . Hoping to get more clarity then (January). As for the lymes test I’m not sure which one was done. Results on quest just say “lymes blot” and list off results for different numbers. Unsure how to tell.
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  7. 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
  8. 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.
  9. Reviving a dead post, anyone with any experience seeing Dr. Legito?
  10. Thank you so much. I have recently gotten the Cunningham Panel which was ordered by my new Neurologist and are awaiting the results. He said that if it comes back with anything, he will treat it, but if it comes back clear, which he believes it will, then he won't treat it as he doesn't seem to think that there are any scientifically proven treatments where the benefits outweigh the risks (I have had serious side effects for treatments for Tourette's and my NES previously). He said that there has been no conclusive evidence that there are treatments which are effective, and so unless the testi
  11. Hey I’m new here. Have a 14 year old who is waiting on an evaluation for PANS/PANDAS. Back in august we had some type of virus. Most of us just had diarrhea and nasal congestion for a day or two. She ended up wiped out (slept 14 hours a days for a few days) slight fever, fatigue, vomiting, diarrhea, swollen glands and nasal congestion. The stomach symptoms lasted over 3 weeks and got better after a bland diet. The first week she was sick she started having pretty bad anxiety, intrusive thoughts, and kept feeling the need to say everything under the sun (in an ocd type of way) due to fear (whic
  12. Im not sure when or why I identify letters with their placement in the alphabet. I do it when i read signs and sometimes while someone is talking to me. For example the name charlie.. i hear or read the name and instantly in my head 3,8,1,18,12,9,5..... Any feedback please!!!! Thank you!!
  13. 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
  14. 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
  15. Hi ThreeAngels, You could always make an appointment with a PANS/PANDAS literate Naturopath and discuss with them. They may be able to help navigate things for you.
  16. Hello There Three Angels, Welcome! I know that it can sometimes take a long time to get a response on here - since the relative privacy that this forum offers means that it is not as immediate as social media and peopIe tend to check into it less often. I have a young teen with relatively new tics and ocd, so we suspect PANDAS. I can certainly agree that tiredness, caffeine, stress and going too many hours without food/water all seem to make it worse. We also find that gluten and dairy have a detrimental effect (this is not the same for everyone) and indeed all the usual "nasties" th
  17. The post of this thread was edited for an important revision. Also, my co-author Sam Keating and I recently completed another genetic study about P/P, that is unusual in that it is quite different than a typical genetic association study. The work is done, and with exciting results, but it is not yet formally or informally published - we need some more time for some additional checking. So we can't show results, but you can read what the study is about via its registration plan, here: https://osf.io/ck5un .
  18. It doesn’t have to be pandas, I.e. born from strep, symptoms can come from any illness where your immune system overreacts. Look up cytokine storm on YouTube to get a understanding of how the immune system responds to an infection or virus and then you’ll get an idea of why there are so many different symptoms and responses. With our kiddo, the underlying problem is dysfunctional mitochondrial cells. When ever she gets an infection or virus her symptoms are elevated and she gets inflammation markers in her blood test. This means her immune system is building antibodies that are inflammatory. S
  19. Hi Carolyn, My daughter and I have been reading some of your posts from when Daniel was young. My grandson, Benji, age 8, has been struggling with tics for over a year now. We think "histamine intolerance" might be what he is dealing with too. We had already been following the Feingold diet because his mother was as a child and still is very affected by artificial colors, sweeteners and preservatives. The Tics do seem to be worse during high pollen seasons. This summer he also became much worse during swimming lessons but responded wonderfully from epsome salt baths and lotions as you sug
  20. Hi, Our Pandas doc never recommended IVIG or Plasmapheresis. The reason was, with our kiddo's illness, we would just be treating the symptoms and not the underlying cause. This of course could be very different in your child's case and could offer a period of much needed relief. At the time these treatments were available, we came across at least one of the underlying causes for our kiddo's Immune system disfunction be mitochondrial cell decency. Had her doctor not found the mitochondrial decency, her symptoms would be unmanageable and IVIG or Plasmapheresis would have been a consideratio
  21. I wanted to bump this thread. Enough time has passed where someone could share successes or failures using this treatment. I am specifically interested in managing pandas systems. We get a number of warnings over the years, that turn out to be misdiagnoses. Over the years, One of the most common reoccurring markers is inflammation. But inflammation never shows up on tests except for a kidney stone. I.e. I think her immune system is jacked up with an inflammation response rather than responding to a specific illness or injury. We know that her mitochondrial cells are deficient and she has had t
  22. Doc. say the vaccine is not a consideration for our kiddo. Her immune system is just too sensitive. We can't even give her supplements without going low and slow. (Update) We just went over our strategy, and kiddo is already on the recommended vitamin D, C and zink, we’re going to add some melatonin. DD’s pandas doctor won’t prescribe ivermectin because she’s been threatened by the AMA for previous prescriptions and will get in trouble if she does it again. I’ve been reviewing how the covid virus and the immune system works. I’m wondering if DD’s macrophage response is the one that
  23. This is very interesting to me. I can't wait to try Ivermectin. I've watched a video of Dr. MoBeen explaining how the immune system macrophages respond and he was explaining cytokine storm. His description sounded so familiar with regard to "inflammation" that I can't help but wonder if this is what is happening in our pans/pandas kids. When my kido's pandas symptoms get exasperated, her inflammation markers are elevated. More often than not, we test her for an infection and she ends up being positive for bacteria and then she get a treatment and her symptoms subside.
  24. My 15yo PANS daughter had both doses of Pfizer in June. She had a very slight increase in anxiety for a few weeks. I am very glad we all got vaccinated, because a member of our household had a breakthrough case and the rest of us did not catch covid. I do think it would have been worse for my DD to get covid rather than the vaccine.
  25. Kiddo was on acyclovir or famvir for years. Her titers did not improve and her symptoms did not improve enough to actually point to the antivirals as a positive. Her Rubella did go down with amantadine (169 to 14), but her coxsackie, and epstein-barr did not improve that I could tell. Her epstein barr was over 600 when we started and over 600 when we stopped, so if it went down it was not discernable on that test. It is possible her EBV titers were say 1200 in the beginning and 700 in the end, but that would not register on the test as both are over 600. Her symptoms have always been
  26. Would love to hear any follow up on your journey with coxsackie and antivirals. this thread came up for me in recent research. maybe someone can guide me to newer threads addressing this topic?
  27. Hi ThreeAngels, I just wanted to welcome you to the forum. I am not clued up on PANDAS beyond the basics, so hopefully someone with more knowledge will be along soon. However what you describe of your strep history, would make me definitely look more into a possible PANS connection to your tics, anxiety etc. Hope you find answers and effective treatment.
  28. Hi everyone. I've had an undiagnosed facial tic for at least 20 years. (I'm 41 now). I've been to a neurologist, had an MRI, been on a few meds (Klonopin is the only one I can remember). I even saw an acupuncturist. They just call it "tic disorder". Yesterday they got pretty bad, to the point where they I was grinding/tensing my teeth. It's mostly blinking/winking, neck tensing, nose clearing, etc.. and more dominant on my right side. Tiredness, caffeine, stress, going too many hours without food/water all seem to make it worse. I started looking up some ways to get relief, and saw PAN
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