Books
I recommend the first two books, in particular, for PANS parents and schools. See more books at ASPIRE.
Recommended for Schools.
PANDAS and PANS in School Settings. A Handbook for Educators. Edited by Patricia Rice Doran.
"This practical handbook explains how educators can distinguish between these symptoms and pre-existing conditions, and offers strategies for supporting students with PANDAS and PANS in school settings."
Recommended for Everyone!
The Explosive Child [Sixth Edition]: A New Approach for Understanding and Parenting Easily Frustrated,Chronically Inflexible Children. By Ross Greene.
"Throughout this compassionate, insightful, and practical book, Dr. Greene provides a new conceptual framework for understanding their difficulties... Dr. Greene’s Collaborative Problem Solving model promotes working with explosive children to solve the problems that precipitate explosive episodes, and teaching these kids the skills they lack."
The Autoimmune Brain. A five-step plan for treating chronic pain, depression, anxiety, fatigue and attention disorders. By David S. Younger, MD.
"His diagnostic techniques and treatment protocols will help readers identify the true cause of their symptoms and put them on a clear path to healing so they no longer feel unbalanced, out of control, forgetful, and exhausted."
A Parent's Guide to PANDAS, PANS and Related Neuroimmune Disorders. Information, Support and Advice. Patricia Rice Doran.
"This clear guide explains the symptoms and diagnosis of PANDAS and PANS, with treatment options and recommended strategies for supporting children at home, at school, and in community settings."
My Story About PANS/PANDAS by Owen Ross.
Includes referenceto IVIg.
"Owen helps the reader understand sometimes the path is straight and easy, but sometimes you must zig-zag or find another way to the top."
Childhood Interrupted:
The Complete Guide to PANDAS and PANS.
Beth Alison Maloney
"...what is it, how it makes your child sick, available treatment options, finding and working with the right doctors, dietary interventions, finding personal support, arranging the correct therapy, hospitalization, your child’s legal rights to obtaining an education, and how your child will recover. Top medical experts in the field offer their insights and share their approaches to treating the disorder..."
Demystifying PANS/PANDAS: A Functional Medicine Desktop Reference on Basal Ganglia Encephalitis. Nancy O'Hara, MD
"...this book provides a roadmap for practitioners and families feeling confused and isolated by this condition, empowering them to make better decisions and sparking a greater conversation about this devastating illness."
Peer-Reviewed Journal Articles
Selected articles. I will continue updating. Most recently published articles at the top.Leonardi L, Perna C, Bernabei I, Fiore M, Ma M, Frankovich J, Tarani L, Spalice A. (2024). Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS): Immunological Features Underpinning Controversial Entities. Children. 11(9):1043. https://doi.org/10.3390/children11091043
Ma, M., Masterson, E. E., Gao, J., Karpel, H., Chan, A., Pooni, R., Sandberg, J., Rubesova, E., Farhadian, B., Willet, T., Xie, Y., Tran, P., Silverman, M., Thienemann, M., Mellins, E., & Frankovich, J. (2024). Development of Autoimmune Diseases Among Children With Pediatric Acute-Onset Neuropsychiatric Syndrome. JAMA Network Open, 7(7), e2421688-. https://doi.org/10.1001/jamanetworkopen.2024.21688
Newby, M. J., Lane, S. J., Haracz, K., Tona, J., Palazzi, K., & Lambkin, D. (2024). Occupational performance patterns in children with paediatric acute-onset neuropsychiatric syndrome. Australian Occupational Therapy Journal, 1–12. https://doi.org/10.1111/1440-1630.12995
Bleibach, A., Sørensena, C. B., Skova, L., Christensenc, K. B. & Debes, N. M. (2024). Reliability and validity of a newly developed PANDAS/PANS questionnaire. European Journal of Paediatric Neurology, Volume 52, 109-130. https://doi.org/10.1016/j.ejpn.2024.07.008
Whelan JP. Strep Throat and the Backstory for PANS and PANDAS. JAMA Netw Open. 2024;7(7):e2421636. doi:10.1001/jamanetworkopen.2024.21636
Calaprice-Whitty, D., Tang, A., & Tona, J. (2023). Factors Associated with Symptom Persistence in PANS: Part I—Access to Care. Journal of Child and Adolescent Psychopharmacology, 33(9), 356–364. https://doi.org/10.1089/cap.2023.0022.
Calaprice-Whitty, D., Tang, A., & Tona, J. (2023). Factors Associated with Symptom Persistence in PANS: Part II—Presenting Features, Medical Comorbidities, and IVIG Treatment History. Journal of Child and Adolescent Psychopharmacology, 33(9), 365–377. https://doi.org/10.1089/cap.2023.0023.
Ringer, N., Benjaminson, C., & Bejnö, H. (2023). Living with Paediatric acute-onset neuropsychiatric syndrome (PANS) – a qualitative study of Children’s experiences in Sweden. Cogent Psychology, 10(1). https://doi.org/10.1080/23311908.2023.2259745.
Dolce, J. L., LaRusso, M. D., & Abadia-Barrero, C. (2022). Disruptions and Adaptations in Family Functioning: A Study of Families’ Experiences with PANS/PANDAS. Journal of Child and Family Studies, 31(3), 790–806. https://doi.org/10.1007/s10826-021-02101-3
Ringer, N., & Roll-Pettersson, L. (2022). Understanding parental stress among parents of children with Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) in Sweden. International Journal of Qualitative Studies on Health and Well-Being, 17(1), 2080906–2080906. https://doi.org/10.1080/17482631.2022.2080906
O’Dor, S. L., Homayoun, S., Downer, O. M., Hamel, M. A., Zagaroli, J. S., & Williams, K. A. (2022). A Survey of Demographics, Symptom Course, Family History, and Barriers to Treatment in Children with Pediatric Acute-Onset Neuropsychiatric Disorders and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. Journal of Child and Adolescent Psychopharmacology, 32(9), 476–487. https://doi.org/10.1089/cap.2022.0063
Wald, Ellen R. MD. A Pediatric Infectious Disease Perspective on Pediatric Autoimmune Neuropsychiatric Disorder Associated With Streptococcal Infection and Pediatric Acute-onset Neuropsychiatric Syndrome. The Pediatric Infectious Disease Journal 38(7):p 706-709, July 2019. | DOI: 10.1097/INF.0000000000002295.
Silverman M, Frankovich J, Nguyen E, Leibold C, Yoon J, Mark Freeman G Jr, Karpel H, Thienemann M. Psychotic symptoms in youth with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) may reflect syndrome severity and heterogeneity. J Psychiatr Res. 2019 Mar;110:93-102. doi: 10.1016/j.jpsychires.2018.11.013. Epub 2018 Nov 14. Erratum in: J Psychiatr Res. 2019 Jun;113:45. PMID: 30605785.
Frankovich J, Leibold CM, Farmer C, Sainani K, Kamalani G, Farhadian B, Willett T, Park JM, Sidell D, Ahmed S, Thienemann M. The Burden of Caring for a Child or Adolescent With Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): An Observational Longitudinal Study. J Clin Psychiatry. 2018 Dec 11;80(1):17m12091. doi: 10.4088/JCP.17m12091. PMID: 30549499.
Sigra S, Hesselmark E, Bejerot S. (2018). Treatment of PANDAS and PANS: a systematic review. Neurosci Biobehav Rev. Mar;86:51-65. doi: 10.1016/j.neubiorev.2018.01.001. Epub 2018 Jan 6. PMID: 29309797.
Calaprice, D., Tona, J., Parker-Athill, E. C. & Murphy, T. K. (2017). A Survey of Pediatric Acute-Onset Neuropsychiatric Syndrome Characteristics and Course. J Child Adolesc Psychopharmacol. Sep;27(7):607-618. doi: 10.1089/cap.2016.0105. Epub 2017 Jan 31. PMID: 28140619.
Spartz, E. J., Freeman, J., Brown, K., Farhadian, B., Thienemann, M., & Frankovich, J. (2017). Course of Neuropsychiatric Symptoms After Introduction and Removal of Nonsteroidal Anti-Inflammatory Drugs: A Pediatric Observational Study. Journal of Child and Adolescent Psychopharmacology, 27(7), 652–659. https://doi.org/10.1089/cap.2016.0179
Frankovich, J., Thienemann, M., Pearlstein, J., Crable, A., Brown, K. & Chang, K. (2015). Multidisciplinary clinic dedicated to treating youth with pediatric acute-onset neuropsychiatric syndrome: presenting characteristics of the first 47 consecutive patients. J Child Adolesc Psychopharmacol. Feb;25(1):38-47. doi: 10.1089/cap.2014.0081. PMID: 25695943; PMCID: PMC4340335.
Brown KD, Farmer C, Freeman GM Jr, Spartz EJ, Farhadian B, Thienemann M, Frankovich J. (2017). Effect of Early and Prophylactic Nonsteroidal Anti-Inflammatory Drugs on Flare Duration in Pediatric Acute-Onset Neuropsychiatric Syndrome: An Observational Study of Patients Followed by an Academic Community-Based Pediatric Acute-Onset Neuropsychiatric Syndrome Clinic. J Child Adolesc Psychopharmacol. Sep;27(7):619-628. doi: 10.1089/cap.2016.0193. Epub 2017 Jul 11. PMID: 28696786; PMCID: PMC5749580.
Murphy TK, Patel PD, McGuire JF, Kennel A, Mutch PJ, Parker-Athill EC, Hanks CE, Lewin AB, Storch EA, Toufexis MD, Dadlani GH, Rodriguez CA. (2015). Characterization of the pediatric acute-onset neuropsychiatric syndrome phenotype. J Child Adolesc Psychopharmacol. Feb;25(1):14-25. doi: 10.1089/cap.2014.0062. Epub 2014 Oct 14. PMID: 25314221; PMCID: PMC4340632.
Many more articles here:
Websites
ASPIRE has an extensive amount of information in many different formats. The Alliance to Solve PANS and Immune Related Encephalopathies (ASPIRE, US).
NIMH National Institute of Mental Health (NIMH, US). PANDAS Questions and Answers.
Neuroimmune Foundation (US). A not-for-profit organisation with physician and clinician education, family support and research.
PANDAS Network (US). Information, resources and research.
PPN PANDAS Physicians Network (PPN, US). Flowcharts for diagnosis and treatment planning, seeing your first patient' information and research.
More websites are found on my Connect page.