What is PANDAS? | The OT Toolbox

What is PANDAS?

I've had a few questions and comments recently about PANDAS. I wanted to put together a collection of resources for PANDAS and PANS so that families, teachers, therapists, grandparents, and caregivers can easily find everything they need to know about this disorder.  The links below are sites that describe more about PANDAS and PANS, including diagnostic information, signs and symptoms of PANDAS, information on clinical trials, and places to find more help.  PANDAS/PANS can be a confusing diagnosis, happening overnight and with dramatic and substantial outcomes.  Use the information below as a starting point when looking for information on PANDAS.

This information is not meant to be a diagnostic tool or means for intervention. It is essential that concerned individuals seek consult from the child's pediatrician. This information is strictly a collection of information and a starting point when seeking out resources.


What is PANDAS and PANS and how are kids impacted by behavioral changes


What is PANDAS?



PANDAS is an acronym standing for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. The disorder appears suddenly following a strep infection like strep throat or scarlet fever and results in obsessive compulsive disorder, behaviors, tics, and similar symptoms.  


PANS, or pediatric acute-onset neuropsychiatric syndrome, refers to children with sudden onset of obsessive–compulsive and other neurobehavioral symptoms, including children with PITAND (pediatric infection-triggered autoimmune neuropsychiatric disorder), children with PANDAS, and children with exacerbations that are due to environmental or metabolic triggers.



Symptoms of PANDAS and PANS


There is not a predictable sequence of symptoms, but a child with a diagnosis of PANDAS/PANS may present with the following symptoms:
  • ADHD symptoms (hyperactivity, inattention, fidgety)
  • Sensory defensiveness
  • Attention difficulties
  • Hyperactivity
  • Impulsivity
  • Age-inappropriate behaviors
  • Obsessions
  • Choreiform movements
  • Separation anxiety (child is "clingy" and has difficulty separating from his/her caregivers; for example, the child may not want to be in a different room in the house from his or her parents)
  • Restricted eating or changes to eating patterns
  • Mood changes, such as irritability, sadness, emotional lability 
  • Trouble sleeping, night-time bed-wetting, day-time frequent urination or both
  • Changes in motor skills (e.g. changes in handwriting)
  • Personality changes
  • Joint pains
  • Changes in occupational performance and performance skill deficits
  • Separation anxiety
  • Oppositional behaviors
  • Marked deterioration in handwriting or math skills
  • Urinary frequency/enuresis
  • Joint pain or stiffness
  • Sleep problems
  • Slow processing speed

How to Help a child with PANDAS/PANS:

Occupational Therapy can help with these symptoms and the difficulties as a result of PANDAS/PANS, as outlined here.

More information about PANDAS and PANS
This fact sheet breaks down diagnosis and treatment strategies.

This research library has a comprehensive collection of references and published works related to PANDAS.  This is a great source for recent research and work related to PANDAS/PANS.


An overnight transition from a typical child to high emotional temperament changes can be overwhelming and scary! The NIHM website has information that answers the question 'What is PANDAS?".  


This site has local support groups available and can direct you to local practitioners.

Find hands-on and creative ways to address attention and executive functioning skills.


Try these sensory-based tricks and tips to help with meltdowns.


Books on PANDAS and PANS for kids, parents, teachers, and therapists

Books about PANDAS and PANS:

These books may help kids with PANDAS or PANS to better understand the disorder and symptoms.  Children with siblings or friends who are experiencing symptoms of PANDAS or PANS would benefit from information relayed in easy-to-understand children's books with pictures.  Also included in this list of books about PANDAS are books that can be referred to parents and teachers of children who are experiencing PANDAS or PANS. 

Affiliate links are included in this post. 

In a Pickle Over PANDAS is a book for kids with PANDAS or PANS

In a Pickle Over PANDAS is a children's book about a young boy who wakes up one morning with new and strange things happening in his body.  They symptoms of PANDAS are described in a way that kids will understand and relate to.  This book is a great resource for kids who are struggling to understand what PANDAS is and that they are not alone. 


Saving Sammy is a book written by a mother of a boy with a sudden onset of PANDAS and describes her fight against the medical establishment to prove the link between infection-triggered PANDAS and her son’s sudden-onset OCD and Tourette syndrome.


PANDAS and PANS in School Settings is a handbook for teachers, administrators, school professionals, school based Occupational Therapists, and anyone who works with a child who is struggling with PANDAS or PANS.  This handbook can help identify challenges and offers strategies to incorporate into the learning environment. 


Childhood Interrupted: The Complete Guide to PANDAS and PANS is a guide for parents of children who are experiencing PANDAS/PANS and are seeking information related to behaviors, treatment interventions, therapy, support, and interventions. 



A Child's Introduction to Understanding PANDAS  is a book that parents can work through with their kids as they struggle to explain what exactly PANDAS is and how it's affecting the child. This workbook is a resource for identifying a individualized strategy plan using the book's journal sheets and strategy plans. 




How to take the Grrr out of Anger is a book that can address one of the common symptoms of PANDAS and PANS.  For kids that are experiencing behavior and emotional challenges as a result of PANDAS/PANS, the new feeling changes can be confusing and overwhelming.  This book is a guide to helping kids understand anger-management tips strategies that can be used in healthy ways.  This book can help kids understand and deal with the anger and emotions they feel.


What to Do When Your Brain Gets Stuck is a book that addresses the obsessive compulsive tendencies that are common with PANDAS and PANS.  This book helps kids understand the obsessions or compulsions they may feel and act on and guides kids and parents through strategies that can help.  The book has a lot of activities, tools, and guided instructions that can help kids take control of their OCD actions or thoughts. 

Books on PANDAS for parents, teachers, kids, and therapists impacted by Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus

Information on PANDAS for parents, teachers, kids, and therapists impacted by Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus







References:
Janice Trigilio Tona, Sutanuka Bhattacharjya, Denise Calaprice; Impact of PANS and PANDAS Exacerbations on Occupational Performance: A Mixed-Methods Study. Am J Occup Ther 2017;71(3):7103220020P1-7103220020P9. doi: 10.5014/ajot.2017.022285.

Tona, J., & Posner, T. (2011, November). Pediatric Autoimmune Neuropsychiatric Disorders: A New Frontier for Occupational Therapy InterventionOT Practice, 14-19. 

PANDAS—Questions and Answers. (2016, Sept) Retrieved from: https://www.nimh.nih.gov/health/publications/pandas/index.shtml



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