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Vickie

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  1. Thought I'd post an update on which states have submitted applications for an Awareness Day and who has been approved. If anyone is interested in still applying, you may be cutting it close for a STATE proclamation, but CITIES do them as well. The city proclamations get processed much quicker, sometimes as fast as 24 hours. In case my photo doesn't come up... New York – Approved Illinois – Approved Texas – Approved Missouri – Approved Nevada – Approved North Carolina – Approved Kentucky: Louisville, KY - Approved , Lexington – Approved Wisconsin – Approved Maryland – Approved Tennessee – Approved Arkansas - Approved Washington DC Arizona Michigan Rhode Island Virginia Washington UK Minnesota Georgia Louisiana Florida Pennsylvania Ohio Connecticut Maine Indiana
  2. For those who may be interested... http://myemail.constantcontact.com/Count-Yourself-In--Be-Part-of-the-PANDAS-PANS-Movement-.html?soid=1103470649803&aid=7V3cVvGYVeA
  3. The price is per person. In order to register, once you pull up the page https://squareup.com/market/ne-pans-slash-pandas-parents-association hover over what you want, click, and an "add to cart" button should open in a new page. If this is not happening for you, I would contact the NE PANS/PANS Parents Association at info@nepandasparents.com.
  4. Kleine Levin Syndrome

    Maybe your physician can get you a copy of this? A case of PANDAS with Kleine-Levin type periodic hypersomnia http://www.sleep-journal.com/article/S1389-9457%2811%2900386-8/abstract Abstract We report on an 11-year-old girl, presenting with clinical features suggesting both pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) and Kleine–Levin syndrome (KLS), who was successfully treated with penicillin prophylaxis. KLS is a sleep disorder characterized by recurrent episodes of hypersomnia and at least one of the following symptoms: (1) cognitive or mood disturbances, (2) megaphagia with compulsive eating; (3) hypersexuality with inappropriate behaviors; and (4) abnormal behavior. The etiopathogenesis is still unclear and there is no effective treatment other than symptomatic therapies. This intriguing case report suggests novel insight into the pathogenesis of this rare and enigmatic syndrome.
  5. Today's PANDAS Network.org newsletter provides information on the NE PANS/PANDAS Conference, including speaker list, cost, and how to register! http://myemail.constantcontact.com/Registration-Now-Open-for-NE-PANS-PANDAS-Conference-.html?soid=1103470649803&aid=Qvh9RP1aZkA
  6. For those that may be interested, here's the latest PANDAS Network.org Newsletter. It includes the Story Behind the NY Awareness Day, IVIG study closing, how to donate to Dr. Agalliu's research, etc. Newsletter link: http://myemail.constantcontact.com/NY-Proclaims-Oct-9th-PANDAS-AWARENESS-DAY--IVIG-Study-Closed----More.html?soid=1103470649803&aid=8PEPnRKbVoQ
  7. The length of the survey depends on your child's experience. One of your answers may take you to another question that another person doesn't have to answer since it doesn't apply to their child. The "average" time is about 30-40 minutes.
  8. The need for more

    Thank you, Hayley, for your kind words about PANDAS Network .org. I’ve been volunteering for the organization for years now. It’s nice to see our efforts are not going unnoticed. We are at a turning point. The need is there to take things a step further and establish our place in the “big leagues“ of non-profits and get things done on larger levels, but currently there are limitations with limited funds and the balancing act of volunteering multiple hours a day along with juggling outside jobs and family. To be blunt, we need backing. I don't know if families are aware of this, but PANDAS Network .org currently does not have ongoing, reliable donations. We appreciate every penny we get, but there is no big donor committed to funding us every year. It feels like we are the starting line, ready to race, but no one sets off the starter pistol.
  9. Do you have the Tel Aviv study mentioned anywhere? That may have some information to add, back up statements. Behavioral, Pharmacological, and Immunological Abnormalities after Streptococcal Exposure: A Novel Rat Model of Sydenham Chorea and Related Neuropsychiatric Disorders http://www.ncbi.nlm.nih.gov/pubmed/22534626
  10. Updated FAQ

    Thank you for updating! In regards to this question... My doctor has said that my daughter is a strep carrier and that the positive strep culture is meaningless. Is this true? I like to make this suggestion.. Swedo states that carriers do not have an immune reaction to strep. Therefore, since PANDAS kids HAVE an immune reaction (PANDAS), they technically cannot be categorized as carriers, even if they are asymptomatic and test positive after a typical round of antibiotics. I think this is very important tool for parents to know as there are still doctors out there that will not treat “carriers”. By explaining why their child isn’t a carrier by definition, they may be more apt to get treatment for the infection.
  11. Was your child on a prophylactic prior to reinfection? Some kids seem to have a milder onset or slower progression of symptoms if they are on a prophylactic at time of reinfection. Also, if your child is taking amoxicillin, that could be part of the problem. Even if amox cleared strep before, it may not do it again. It has a high failure rate in eradicating strep. Consider contacting your doctor and asking if they can switch to something else. If they say to bring your child back in for a re-swab, "remind" them that he can now get a false negative since he is on antibiotic.
  12. Do you have a link to where you found the speakers listed?
  13. Please represent PANDAS on Rare Disease Day 2013! Information for how you can get involved in "Handprints Across America" can be found here. Simply print off the Rare Disease Day logo and take a picture of yourself holding it up. Be sure to mention PANDAS in the caption you will be asked to provide! Hand Across America link: http://rarediseaseda...merica-gallery/
  14. PANDAS in the News

    This is the same Tel Aviv study that first cropped up a couple years ago. After being off radar for a long time, it was finally released in 2012. Only the abstract to the study is available, if interested... Behavioral, Pharmacological, and Immunological Abnormalities after Streptococcal Exposure: A Novel Rat Model of Sydenham Chorea and Related Neuropsychiatric Disorders http://www.ncbi.nlm.nih.gov/pubmed/22534626 Abstract Group A streptococcal (GAS) infections and autoimmunity are associated with the onset of a spectrum of neuropsychiatric disorders in children, with the prototypical disorder being Sydenham chorea (SC). Our aim was to develop an animal model that resembled the behavioral, pharmacological, and immunological abnormalities of SC and other streptococcal-related neuropsychiatric disorders. Male Lewis rats exposed to GAS antigen exhibited motor symptoms (impaired food manipulation and beam walking) and compulsive behavior (increased induced-grooming). These symptoms were alleviated by the D2 blocker haloperidol and the selective serotonin reuptake inhibitor paroxetine, respectively, drugs that are used to treat motor symptoms and compulsions in streptococcal-related neuropsychiatric disorders. Streptococcal exposure resulted in antibody deposition in the striatum, thalamus, and frontal cortex, and concomitant alterations in dopamine and glutamate levels in cortex and basal ganglia, consistent with the known pathophysiology of SC and related neuropsychiatric disorders. Autoantibodies (IgG) of GAS rats reacted with tubulin and caused elevated calcium/calmodulin-dependent protein kinase II signaling in SK-N-SH neuronal cells, as previously found with sera from SC and related neuropsychiatric disorders. Our new animal model translates directly to human disease and led us to discover autoantibodies targeted against dopamine D1 and D2 receptors in the rat model as well as in SC and other streptococcal-related neuropsychiatric disorders. PMID: 22534626 [PubMed - in process] PMCID: PMC3398718 [Available on 2013/8/1]
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