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PANDAS_Denmark

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About PANDAS_Denmark

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  1. Hej :-) Jeg er dansk mor til en 11årig dreng med PANDAS. Jeg så en af dine posts ved et tilfælde og kunne ikke undgå at bemærke, at du er fra Sverige. Er du opmærksom på dette nordiske forum for PANDASforældre : http://www.facebook.com/groups/248942168516221/ ?? Så vidt jeg kan læse ud af dine posts, er din søn meget hurtigt blevet diagnosticeret OG behandlet - og med godt resultat ?? Charlotte

  2. Thank you SO very, very much ! (and all the way from Denmark :-) )
  3. http://www.andersoncooper.com/2012/02/10/could-the-illness-in-le-roy-be-pandas/
  4. In THIS article Swedo is - quite interesting - quoted for saying : "If this many girls had gotten PANDAS in the school, then that meant there was a very virulent form of strep in the school"; that is : PANDASclusters are a possibility given the right (or wrong !) circumstances -
  5. Hm - it seems as if Mechtler did consult Dr. Swedo ? : - If that is in fact correct, I find it highly problematic, given that NIMH just yesterday stated, that Swedo hadn´t seen or examined the Le Roy kids and because of that wasn´t able to make a statement about them or their diagnosis -
  6. When asked the Batavian reporter seems to point at Swedo ! : http://www.facebook.com/thebatavian#!/thebatavian/posts/10150767545159972 IF that is in fact correct, I find it highly problematic, given that NIMH just yesterday stated, that Swedo hadn´t seen or examined the Le Roy kids and because of that wasn´t able to make a statement about them or their diagnosis -
  7. Mechtler & Vige : "Although we have not evaluated all the patients affected, we have considered many other diagnoses, such as PANDAS and neuro-toxicity due to environmental factors. With the cooperation of the New York State Department of Health and nationally recognized PANDAS specialists, we have ruled out these diagnoses ..."
  8. According to The Batavian Q and A with Susan Swedo (http://thebatavian.com/howard-owens/q-dr-susan-swedo-regarding-pandas/30364) if that is considered a reliable source of information, she now states that : "The updated clinical criteria for PANDAS are as follows: 1) Presence of obsessive-compulsive disorder and/or tic disorder; 2) Unusually abrupt onset of symptoms ("overnight," "0 to 60 in one to two days," "possessed by the illness"); 3) Prepubertal onset (NOTE: This criterion was an arbitrary one chosen because post-streptococcal reactions are rare after age 12, but could occur in individuals who do not have protective immunity.); 4) Association with other neuropsychiatric symptoms, including various combinations of the following (NOTE: All would start suddenly and in combination in a previously healthy child): a. Severe separation anxiety (can't leave parent's side, needs to sleep on floor next to their bed etc); b. Generalized anxiety which may progress to episodes of panic and "terror-stricken look"; c. Motoric hyperactivity, abnormal movements and sense of restlessness; d. Sensory abnormalities, including hypersensitivity to light or sounds, distortions of visual perceptions and, occasionally, visual or auditory hallucinations; e. Concentration difficulties, loss of academic abilities, particularly in math and visuo-spatial skills; f. Urinary frequency and new onset of bed-wetting; g. Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with suicidal ideation; h. Developmental regression, including temper tantrums, "baby talk" and handwriting deterioration (also related to motor symptoms). 5) Association with streptococcal infection. At initial onset, the symptoms may have followed an (asymptomatic and therefore untreated) streptococcal infection by several months or longer, so you might not find the inciting strep infection. However, on subsequent recurrences, the worsening of the neuropsychiatric symptoms may be the first sign of an occult strep infection (and prompt treatment may reduce the OCD and other symptoms). FOR PANS – Criterion #1 is limited to OCD only (no tic disorders as primary diagnosis) and the last criterion is eliminated because PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and does not include an etiologic component." I´m a bit confused by this : - Now we have BOTH PANDAS AND PANS ? - with two different sets of criteria ? Have I got it all wrong ? Wasn´t the intention to work and agree on a new and better defintion of PANDAS (and PANDASlike diseases/PITAND) ? and as a part of that process to rename the disease - to PANS ? - What SEEMS to happen as far as I can see, is that we will now have PANS that doesn´t include an etiologic component and as such cannot and will not be able to pinpoint adequate treatments but only those that merely adress the symptoms ? - AND we will still have PANDAS, that includes the etiological component, and/but there will still be disagreement as to the question of possible etiological factors - and as a consequence of that : What are the treatment options that should be considered ? - AND the kids with PANDAS(like illness) due to myco, lyme etc. will still be left in the middle of nowhere (or with a PANS diagnosis, that leaves them without treatment options others than those that merely adresses the symptoms ?) What is the gain from all of this ????
  9. "Dr:LeRoy girls have PANDAS-like illness Updated: Tuesday, 07 Feb 2012, 6:25 PM EST Published : Tuesday, 07 Feb 2012, 11:59 AM EST Ed Drantch LEROY, N.Y. (WIVB) - A New Jersey doctor is offering another possible explanation for the illness affecting over a dozen students in LeRoy. Dr. Rosario Trifiletti rebukes the diagnosis of conversion disorder. He says his test results show an infection is behind the girls' unusual symptoms. The uncontrollable shakes and outbursts could be connected to something other than conversion disorder. News 4 has confirmed eight girls from LeRoy High School have now also been diagnosed with a "PANDAS-like" illness. Dr. Trifiletti says infectious triggers could be causing the teens' shakes. Last night on HLN, Dr. Drew Pinsky asked the doctor, "Dr. Trifiletti has believed this entire thing might be an infectious outbreak. And as I hear you talk, doctor, that would be your provisional impression?" "That's right; I think that's one of the main factors and one of the most easily reversed factors here," argued Dr. Trifiletti. In a statement, the doctor said his diagnosis leads to rational medical treatment, which is of immediate importance. He states treatment has already started and notes their response will be helpful in supporting his diagnosis. But there may be disagreement. Dr. Sue Swedo from the National Institutes of Health discovered the syndrome called "PANDAS." She says, "If it's only tics, it's not PANDAS. PANDAS and PANS are both clinical diagnoses. They do not depend on lab tests to make the diagnosis." Dr. Trifiletti says he used lab tests to make the diagnosis, but Dr. Swedo says high levels of strep antibodies are incredibly common in grade school children. You can learn more about PANDAS from the National Institutes of Health here. "You're obligated to prove that strep tider that is elevated actually had anything to do with the onset of symptoms and that's been a major issue with PANDAS all along," Dr. Swedo said. Dr. Trifiletti has not shared his diagnosis with doctors from the Dent Institute, who determined this was a case of conversion disorder. The Dent Institute had no comment on Dr. Trifiletti's report, but did tell News 4 another student in LeRoy has been diagnosed with conversion disorder, bringing the total number of cases to 16" http://www.wivb.com/dpp/news/local/dr-confirms-pandas-in-some-leroy-girls
  10. Wauw ! Thank you for posting this ! This is huge ! Mr. Conversion Disorder caught in a(nother) lie !
  11. Thought someone might be interested in this "conversation" with the Batavian guy about Mechtler and the question of whether Swedo is involved somehow :
  12. Markowski, a biological psychologist and a professor at SUNY Geneseo : He's been closely following the mystery illness in Le Roy in the media. He says the culprit may be a common bacterial infection : "It seems to fit all the symptoms. "The facial tics, uncontrolled movements in the face." http://rochester.ynn.com/content/top_stories/572334/healthy-living--can-pandas-be-ruled-out-/
  13. The interview is now online : http://drdrew.blogs.cnn.com/2012/01/27/erin-brockovich-investigating-teen-mystery-illness/?hpt=dr_mid Erin Brockovich states : “I think the first thing that hit me in my gut was, ‘well, you haven't necessarily ruled anything and everything in or out,’” she said. “It just seemed to be a very quick diagnosis.”
  14. Hi, My 10years old PANDASson suffers from skin peeling as you describe it, every time he has been exposed to strep. The doctors have told me that the skin peeling and PANDAS is "somehow related ... but I am not to worry". Haha :-(
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