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a blog about what PANDAS is really like. (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus)

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9 Research Articles: 12 Days of PANDAS Sucks

2016-01-02 by Sarah Leave a Comment

Welcome to Day 9 of the “12 Days of PANDAS Sucks”!

Every day from December 25 – January 5, you can expect to see a blog post from yours truly. You probably won’t be able to sing the days as a song, but I think you’ll still like it. LOL! However, I will be posting a different version of the song “The 12 Days of Christmas” on each blog. To listen to Day 9’s version, click here .

On this ninth day of PANDAS Sucks, I give to you NINE RESEARCH ARTICLES.

These papers are some of the best ones to have bookmarked, saved, printed, and ready to go for whoever needs them. Might be for a doctor. Might be for a school counselor or teacher. Might be for your mother-in-law. Might be for that nosy Facebook friend that who likes to negatively pipe in on all of your PANDAS/PANS posts. Ha ha. You have maybe read these papers as they were released, but it’s nice to have them all together for easy reference. Here are links to NINE RESEARCH ARTICLES:

 1. Group A Streptococcus intranasal infection promotes CNS infiltration by streptococcal-specific Th17 cells
by Thamotharampillai Dileepan, Erica D. Smith, Daniel Knowland, Martin Hsu, Maryann Platt, Peter Bittner-Eddy,Brenda Cohen, Peter Southern, Elizabeth Latimer, Earl Harley, Dritan Agalliu, and P. Patrick Cleary [NOTE: This is the latest research on PANDAS that showed how immune cells/auto-antibodies triggered by recurrent Strep A infections enter the brain  by traveling along odor-sensing neurons in the nasal cavity versus directly breaching the blood-brain-barrier (BBB). These findings could bring improved ways to diagnose, monitor, and treat PANDAS. Here is a video explaining the findings in the paper.]

2. Clinical Evaluation of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference
Kiki Chang, MD;Jennifer Frankovich, MD; Michael Cooperstock, MD, MPH; Madeleine W. Cunningham, PhD; M. Elizabeth Latimer, MD; Tanya K. Murphy, MD; Mark Pasternack, MD,; Margo Thienemann, MD; Kyle Williams, MD; Jolan Walter, MD; and Susan E. Swedo, MD (From the PANS Collaborative Consortium)
[NOTE: This article appeared in the JOURNAL OF CHILD AND ADOLESCENT PSYCHOPHARMACOLOGY in a special PANS/PANS edition. You can link to the rest of those JCAP articles on the Moleculera Labs web site. It’s so awesome that they are available that way! Thank You Moleculera Labs!!!]

3. Post-infectious autoimmune disorders: Sydenham’s chorea, PANDAS and beyond
by Kyle A. Williams and Susan E. Swedo [NOTE: This article appeared in a special issue of Brain Research that had an editorial commentary by Dr James Leckman and Flora M. Vaccarino :  “What does immunology have to do with brain development and neuropsychiatric disorders?“. Interesting stuff!]

4. From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) 
by Susan E. Swedo, James F. Leckman and Noel R. Rose.

5. Comparison of Clinical Characteristics of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections and Childhood Obsessive-Compulsive Disorder 
by Gail A. Bernstein, M.D.,Andrea M. Victor, Ph.D., Allison J. Pipal, M.A., and Kyle A. Williams, M.D.

6. Clinical Factors Associated with PANDAS
by Tanya K. Murphy, MD; Eric A. Storch, PhD; Adam B. Lewin, PhD.; Paula J. Edge, BS.; and Wayne K. Goodman, MD

7. Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections: Clinical Description of the First 50 Cases
by Susan E. Swedo, M.D., Henrietta L. Leonard, M.D., Marjorie Garvey, M.D., Barbara Mittleman, M.D., Albert J. Allen, M.D., Ph.D., Susan Perlmutter, M.D., Lorraine Lougee, L.C.S.W., Sara Dow, B.A., Jason Zamkoff, B.A., and Billinda K. Dubbert, M.S.N. (The article that introduced PANDAS and appeared in The American Journal of Psychiatry in February 1998.)

8. PANDAS and PANS: Essential Facts for Teachers
by Patricia Rice Doran, Ed.D. (From the PANDAS Network site and easy to understand.)

9. Considerations Regarding Academic Accommodations/Compensatory Strategies, and Services for Students with PANDAS/PANS
by Jamie Candelaria-Greene PhD, BCET (From the PANDAS Network site with great strategies and accommodations for schools to use with PANDAS/PANS students.)

BONUS Article: Neurocognitive Functioning in Youth With Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcus
by Adam B. Lewin, Ph.D., A.B.P.P;  Eric A. Storch, Ph.D.;  P. Jane Mutch, Ph.D; and Tanya K. Murphy, M.D. [NOTE: This is a good article to show schools how PANDAS/PANS can affect neurocognitive functioning. Nice tables.]

I want to say THANK YOU to PANDAS Network for always keeping the PANDAS/PANS Community informed on the latest research. You can also find Articles on the PANDAS Sucks site. And always watch your Facebook News Feed for new research. Last year was such a great year for PANDAS/PANS Research! Here’s hoping that more research is published in 2016 and that they will bring wider recognition of PANDAS/PANS to the medical community and beyond.

Have any other “go to” articles? Link them in the comments or send a message to me here. I will get them added to the PANDAS Sucks web site.

Until tomorrow, which will be the 10th Day of PANDAS Sucks. 🙂

Love,

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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!).  PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Instagram, Twitter, and Pinterest.

Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor. 

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Filed Under: Advocacy/Awareness, Blog Tagged With: 12 days of PANDAS Sucks, Advocacy, articles, Awareness, blog, Christmas, PANDAS Parents and Caregivers, PANDAS Sucks, PANDAS/PANS, PANDAS/PANS Meme, PANS, streptococcus

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