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Buster last won the day on February 23 2016

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  1. Where to donate for PANDAS research?

    There are several great places to donate depending what your focus is. I donate to two groups: pandasppn.org and pandasnetwork.org. Pandasppn.org focuses on sponsoring clinical research and research grants associated with pans/pandas - it's more focused on medical professionals. Pandasnetwork.org sponsors research, research symposiums, and provides parent support services and outreach. Buster
  2. According to dr Swedo, The cell line that had the d8/17 marker died out. It appeared promising but no longer practical.
  3. Updated FAQ

    That's a good point. The current FAQ is very PANDAS specific rather than being PANS/PANDAS and PITANDS partitioned. I'll try a version partitioned and see.
  4. Hi folks, I've been going through the various papers and trying to tease out what questions the researchers are actually answering. If you've been reading papers you think are signfiicant can you add to this list or send me a message regarding other questions/papers? I'm not looking for "review" articles, but rather people running experiments that are testing certain hypothesies. Whether sudden onset OCD is correlated with untreated strep infections? [swedo1997] S Swedo et al, "Identification of Children With Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections by a Marker Associated With Rheumatic Fever", Am J Psychiatry 154:1, January 1997 http://ajp.psychiatryonline.org/cgi/reprint/154/1/110.pdf [swedo1998] Swedo SE et al., "Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections: Clinical Description of the First 50 Cases", Am J Psychiatry 155:2, February 1998. http://ajp.psychiatryonline.org/cgi/reprint/155/2/264 Whether established OCD and/or tic disorders have exacerbations associated with treated strep infections? [Kurlan 2008] Kurlan R, et al. Streptococcal infection and exacerbations of childhood tics and obsessive-compulsive symptoms: a prospective blinded cohort study. Pediatrics. 2008 Jun;121(6):1188-97. [Leckman 2011] Leckman JF, et al. Streptococcal upper respiratory tract infections and exacerbations of tic and obsessive-compulsive symptoms: a prospective longitudinal study. J Am Acad Child Adolesc Psychiatry. 2011 Feb;50(2):108-118 Whether symptoms remit when treated with antibiotics? [Garvey 1999] Garvey, MA et al. A pilot study of penicillin prophylaxis for neuropsychiatric exacerbations triggered by streptococcal infections. Biol Psychiatry. 1999 Jun 15;45(12):1564-71. [snider 2005]. Snider2005, et al, Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders. Biol Psychiatry. 2005 Apr 1;57(7):788-92. [Murphy2004] Murphy TK, Muhammad S, Soto O, et al. "Detecting pediatric autoimmune neuropsychiatric disorders associated with streptococcus in children with obsessive-compulsive disorder and tics", Biological Psychiatry, Volume 55, Issue 1, Pages 61-68, January 2004 http://www.journals.elsevierhealth.com/per...0704-2/abstract Whether symptoms remit when treated with IVIG/PEX? [Perlmutter1999]Perlmutter SJ, Leitman SF, Garvey MA, "Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood", Lancet 1999; 354 : 1153 58 http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf Whether strep colonization alone is sufficient to trigger exacerbations? [Dileepan 2011] Dileepan T, et al. Robust antigen specific th17 T cell response to group A Streptococcus is dependent on IL-6 and intranasal route of infection. PLoS Pathog. 2011 Sep;7(9) [Wang 2010] Wang B, et al. Induction of TGF-beta1 and TGF-beta1-dependent predominant Th17 differentiation by group A streptococcal infection. Proc Natl Acad Sci U S A. 2010 Mar 30;107(13):5937-42. [ Hyland 2009] Hyland KA , et al. The early interferon response of nasal-associated lymphoid tissue to Streptococcus pyogenes infection. FEMS Immunol Med Microbiol. 2009 Apr;55(3):422-31. [Constalonga 2009] Costalonga M, et al. Intranasal bacteria induce Th1 but not Treg or Th2. Mucosal Immunol. 2009 Jan;2(1):85-95. Whether anti-neuronal antibodies are diagnostic for PANDAS? [singer 2008] Singer, et al. “Serial immune markers do not correlate with clinical exacerbations in pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.”, Pediatrics. 2008 Jun;121(6):1198-205. [Kirvan2003] Kirvan CA, Swedo SE, Heuser JS, Cunningham MW, "Mimicry and Auto-antibody mediated neuronal Signaling Cells in Sydenham Chorea", Nature Medicine 9, 914 - 920 (2003) http://www.pandasnetwork.org/Cunningham.NMpaper[1].pdf [Kirvan2006] Kirvan CA, Swedo SE, Kurahara D, Cunningham MW, "Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea". 2006 Autoimmunity 39 (1): 219. http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf [Dale 2012] Dale RC, et al. Antibodies to surface dopamine-2 receptor in autoimmune movement and psychiatric disorders. Brain. 2012 Nov;135 (Pt 11):3453-68. doi: 10.1093/brain/aws256. Epub 2012 Oct 11. [brilot 2011] Brilot F, et al. Antibody binding to neuronal surface in Sydenham chorea, but not in PANDAS or Tourette syndrome. Neurology. 2011 Apr 26;76(17):1508-13. Whether antibodies to GABHS trigger behavioral changes (in mice)? [Yaddenapudi 2010] Yaddanapudi K, et al. Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection. Mol Psychiatry. 2010 Jul;15(7):712-26. [Hoffman 2004] Hoffman KL et al, A murine model for neuropsychiatric disorders associated with group A beta-hemolytic streptococcal infection. J Neurosci. 2004 Feb 18;24(7):1780-91. Whether exacerbations are correlated with otherwise asymptomatic carriage? ??? Kurlan? Any others? Buster
  5. Updated FAQ

    Will do. I'll update that section.
  6. Just a note that I updated the Frequently Asked Questions (FAQ) at http://www.latitudes.org/forums/index.php?showtopic=6266 I'll make another pass at it tomorrow to bring in more of the research of the last 2 years. Buster
  7. Dr. Leckman?

    Hi, Leckman is an extremely reasonable doctor and has seen now first hand the PANDAS kids. He didn't retract his prior papers (which is a shame, but has said publically that he didn't think he had PANDAS kids in his prior trials and instead had kids with Tourettes who met most (if not all) the PANDAS criteria as interpreted at the time). He frankly thought sudden onset or episodic course was a throw away line as it applied to any tic because they all have sudden onset and wax/wane. It took him seeing a PANDAS kid before, during, and after an exacerbation to understand how different the sawtooth pattern of exacerbation was from the more wave like transitions associated with tics/traditional OCD. Buster
  8. Lancet Article 2/28/13

    Here's a reference to the original work. Heard about it today on NPR: Lancet article
  9. It's hard to tell if mitral valve preceded other symptoms, however, if you have ocd, movement disorder and mitral valve involvement, it sure sounds like underlying acute rheumatic fever . About 30% with arf get monoPhasic Sydenham chorea. About 20% with arf develop OCD (typically those who have sc) thinkIng of you, Buster
  10. My understanding is that the auto-antibodies in PANDAS bind with D1 and D2 receptors. One of the sphincters in the bladder/urinary tract is also controlled by D2 receptors. Apparently, the auto-antibodies accidentally relax the sphincter. Buster
  11. Well there's a current clinical study looking at the relationship between Vitamin D and hypercholesterolemia. My gut is she's likely vitamin D deficient and pretty stressed out. I'll be interested in the test results. http://clinicaltrials.gov/ct2/show/NCT00723385 Buster
  12. Hi folks, I've seen a bunch of traffic about whether PANS replaces PANDAS. It does not. I checked with Dr. Swedo and with Dr. Leckman. PANDAS remains a research criteria and there is considerable scientific support for the association with streptococcal infections as well as support for the broader PITAND criteria due to H1N1, mycoplasma pneumonia, etc. You might be asking "why if there is good scientific evidence do we have three criteria rather than one". Well.... The reason for creating PANS as a new set of criteria was to enable epidemiology studies. Dr Swedo writes in PANS that the lack of uniformity in applying the PANDAS criteria led to significant differences in the outcome of studies. This is research speak for "if you don't have any ducks in your sample, don't make claims about ducks". Dr. Swedo comments that "establishing an etiologic role for GAS in the onset of PANDAS is often as difficult as it is for SC". In fact it is probably worse because several researchers failed to understand what a PANDAS case even looks like. Neurologists seem to think PANDAS is a horse and pediatric psychiatrists/clinicians see PANDAS as a zebra with very distinctive markers. But until neurologists see a zebra -- it's sort of hard to describe the difference. I'm writing this to ask your help in reminding folks why we have three distinct criteria: PANS is to help neurologists actually recognize a zebra so we can have multi-site research PANDAS is to help researchers understand the pathogenesis in one specific infection PITAND is to be a broader category to remind folks it isn't just GABHS I know we as parents are very focused on diagnosis and treatment, but please don't lose sight of the big picture. We must get uniformity of subjects in multi-site research -- i.e., so experiments can be replicated. Otherwise we'll continue having neurologists testing horses and psychiatrists testing zebras with controversy on whether the tail is the same (hope the analogy works). Buster
  13. LOL, we all know if its in Wikipedia it must be true! I should mention that I spent months trying to move the Wikipedia article (basically because of a single "editor"). On controversial topics, there are apparently some "rules" for the editors: You need to cite review articles and not original research -- apparently to prevent incorrect interpretation You need to cite review articles that have been out for a while -- otherwise it's too recent You can't connect material from different articles -- this is considered original research You can imagine with PANDAS that this is a bit tough since the editorials are largely written by John Hopkins authors.
  14. Positive strep normal ASO?

    There was a paper Feb 2010 by Leckman and Kaplan titled "The Human Immune Response to Streptococcal Extracellular Antigens: Clinical, Diagnostic, and Potential Pathogenetic Implications." (see http://cid.oxfordjournals.org/content/50/4/481.full) that also found a considerable failure of ASO to rise in documented and controlled experiments. The big statement is: "Of the previously mentioned 58 new GAS acquisitions, 36 (62.1%) were associated with a significant increase in ASO and/or ADB titer. However, only 28 of these acquisitions were associated with an increase in ASO and 28 with an increase in ADB." This means ASO rose in only 48% of cases. So a rise in ASO is confirmatory of a prior strep infection. A failure to rise doesn't seem to be meaningful (i.e., it doesn't happen in 52% of the time in the above cases of confirmed infections). Is that recent enough? This is remarkably similar to Shet's numbers -- so really a rediscovery but very recent. Buster
  15. Positive strep normal ASO?

    Yes. Take a look at this thread: http://www.latitudes.org/forums/index.php?showtopic=3756&st=0#entry29305 In 2003 by Shet and Kaplan found that ASO rises in 53% of patients with culturable strep (i.e., about the same as a coin flip). Buster