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Everything posted by Buster

  1. 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. 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 St
  5. 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. 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 t
  8. 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 writ
  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 i
  14. 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 wit
  15. 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
  16. There are really two different items raised by Dr Swedo. Daytime urinary frequency and then nightime enurisis. In the last IOCDF conference two of the researchers commented that the dopamine D2 receptor is also on the outer sphincter -- and so if you are having something that interacts with the D2 receptor in the blood, it tends to also affect bladder control and the feeling of needing to pee. Regardless, it is worth getting the urine checked to see if there is another trigger. Buster
  17. I don't. But do wonder if someone on this distribution might. Here's how I see the paper: it is a minority position paper -- the 5 named neurologists apparently agreed with the NIH conference about the creation of a broader category, but disagreed with the criteria of the conference. the paper does not fit the critiera for publication -- It is neither a report of "latest advancements" nor a presentation of "logical conclusions and recommendations" (see www.jpeds.com/authorinfo) the paper has factual inaccuracies -- (such as the statement that GABHS carriers can have protractedly eleva
  18. I just read through the very thoughtful posts here regarding the "PANDAS to CANS" paper. You all are much better at being neutral here and seeing the paper as being a first step by Dr. S towards recognizing a new illness. What probably bothers me the most is the misquoting of papers. In the new paper, the neurologists say "Nevertheless, there is strong evidence suggesting the absence of an important role for GABHS" citing reference 13 (Kurlan2008) and 14(Leckman2011). So I dutifully go off to see if these references support this statement. Nope. The Kurlan2008 article states "T
  19. Yes, it could be quite normal for your DS to have a 224 for the ASO. The fall of antibodies is not well studied. There is a correlation seen in many patients of the rise of ASO within 0-4 weeks of an infection; however, the fall rate is not well studied. In one study, 5% of kids (in the 5-10 age group) with no symptoms or preconditions had an ASO level > 196. You might find this thread interesting: http://www.latitudes.org/forums/index.php?showtopic=3756&st=0&p=25312entry25312 Bottom line if you are not seeing symptoms, I wouldn't worry too much about the ASO rate as it
  20. I keep thinking about all the flaws in the Kurlan and Singer papers and how much damage has been done with abstracts and titles that don't correspond to the findings of the paper. As just one example, in the 2011 CANS paper, Kurlan and Singer make the classic fatal research error of assuming a failure to confirm is equivalent to disproving a hypothesis. Arrgh, did they even take statistics? Their actual quote was "there is strong evidence suggesting the absence of an important role for GABHS [in tic and OCD disorders]" where they self-cite their 2008 longitudinal paper. Contrary to t
  21. I had a chance to read through the Singer's new article about "Moving from PANDAS to CANS". I can't believe he's recommending Lumbar punctures and MRIs and not recommending a throat culture or MycoPlasma test. On the silver lining side, it is apparent that the authors have finally read Dr. Swedo's 2004 paper and are now using a different criteria of "sudden 'explosive' onset of symptoms and course of recurrent sudden exacerbations and remissions". This is quite different from Kurlan's 2008 paper where he used "clinical course characterized by the abrupt onset of symptoms or by a pa
  22. To have an IEP, the child must have either mental retardation, hearing impairments, speech or language impairments, visual impairments, serious emotional disturbance, orthopedic impairments, autism, traumatic brain injury, or other health impairments, or specific learning disabilities (in one of 8 areas); and by reason thereof requires special education and related services. It is this “requirement of special education” that is the difference between the 504 and the IEP. If the child has a disability but doesn’t require special education/instruction, the child isn’t eligible for an IEP.
  23. Hi T.mom, Actually I wasn't dealing with the treatment in this version -- so if you used antibiotics or steroids or ... all of those are fine. I was trying to get a sense of the shape of the curve. Probably what I need to do is have people try to describe their graph pre-treatment and post-treatment and pre-re-treatment (if any) and post-re-treatment (if any). The t1, t2, ... is for something else where these are time indexes that I was going to use to ask about how long it was from t1 to t2 and from t2 to t3 etc. Buster
  24. Hi Folks, If you think of your child's symptoms did they look more like this: Graph 1 or like Graph 2 or something else? Buster
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