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PANDAS/PANS and Children with Autism

Introduction

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) is associated with or initiated by streptococcal infections.  Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) is a bigger subset which can include Lyme, Lyme co-infections, chemicals and other possible viruses such as Epstein Barr Virus (EBV), Herpes Simplex, Staph, and Mycoplasma.  See the PANDAS Network for more information.

Both disorders are usually characterized by the sudden on-set of symptoms such as OCD (Obsessive Compulsive Disorder), motor tics, abnormal eating behaviors (anorexia), anxiety, mood swings, aggression, cognitive deterioration, sensory and motor abnormalities, irritability and oppositional behaviors.  Elevated antibodies and infections signal neuronal cells in the brain which trigger the above symptoms.

Many parents report that their child's sudden aggressive behaviors are unexplainable to medical physicians who are generally not familiar with these disorders.  However, what is most important is to make the connection between the neurological behaviors and issues going on with the immune system.  Antibodies can be elevated and testing for triggers is essential to determine how to down regulate the immune reactions in order to turn off the activated antibodies to reduce symptoms.  Medical treatment protocols for PANDAS and PANS may include: Intravenous Immunoglobulin (IVIG), antibiotics, plasmaphereisis or plasma exchange, steroids, Low Dose Naltrexone, Transfer Factor, or antivirals.  The following medical conditions may also contribute to the sudden onset of the manic and psychotic behaviors: Kryptopyrroluria (Pyrrole Disorder), low cholesterol, low lithium levels, low vitamin B12, and low Vitamin D, low Ferritin, hypothyroid, and possible elevated testosterone and other androgens.  Talk to your doctor about symptoms, testing, and treatment protocols for the above conditions to gain a better understanding of your child's particular case.

Related Sites

PANDAS, PANS, Penguins and Autism
Description:  One family’s story.

Dear Autism and PANDAS/PANS Researchers - Listen To The Parents
Description:  This article contains a small group of parental reports. They are though, a picture of a much bigger issue, an issue that keep research, treatments and causation blocked from very sick children. Parents need true research and studies that can help stop these immune system diseases and in doing so, it must be recognized that autism and PANDAS/PANS are related.

The PANDAS Network
Description:  Provides parents with the latest information on PANDAS and PANS including research and resources.

International OCD Foundation
Description:  This site gives a very comprehensive understanding of PANDAS and PANS.

Books

Your Child has Changed Should You Consider PANDAS? by the Association for Comprehensive Neuro Therapy
Description:  This e-book discusses what PANDAS is, dealing with the symptoms, prevention, treatments and finding support.

PANDAS and PANS in School Settings: A Handbook for Educators by Patricia Rice Doran
Description:  This useful handbook provides insight to educators on the recognition of PANS/PANDAS and how to deal with these conditions.

Joshua’s Missing Peace by Lori Suthar
Description:  This book is a very personal account of the author Lori Suthar’s son and his journey with PANDAS. She writes about the frustrations, trials and tribulations they experienced before Joshua was diagnosed. Lori helps other families on their journey to avoid all of the difficulties by sharing her unique and uplifting story.

Childhood Interrupted: The Complete Guide to PANDAS and PANS by Beth Alison Maloney
Description:  Childhood Interrupted is a very candid account of the symptoms of PANDAS and PANS including a treatment and dietary protocol. The author addresses the need to work with the right doctors on an appropriate plan for children with this condition. The book also provides lots of tips and tools for families.

Tools

PANDAS Network
Description:  Link to possible symptoms list for a PANDAS exacerbation.

Moleculera Labs
Description:  Cunningham Panel to determine PANDAS and PANS.

The Cunningham Panel: Testing for PANDAS and PANS
Description:  Learn about a special test called the Cunningham Panel used to test for PANS and PANDAS.

Addressing Anxiety and OCD in ASD by S. Chandra MD
Description:  Video on how to address anxiety and OCD in ASD.

Parent Forums/Blogs

Some forums require you to sign in to Yahoo or Facebook to locate forum names.

Forum/Blog Name:  PANDAS/PANS/Lyme/Tick-Borne Diseases
Description:  Welcome to PANDAS/PANS/LYME/TICK-BORNE DISEASES, a safe place for parents to come for support & information for their children afflicted with PANDAS/PANS and/or Lyme & Tick-Borne Diseases.

Forum/Blog Name:  PANDAS Parents
Description:  This group is open to all PANDAS/PANS parents, however, we differ from other PANDAS/PANS groups by narrowing the focus and limiting the discussion of posts to topics specifically related to traditional PANDAS (triggered by Strep).

Forum/Blog Name:  PANDAS
Description:  Welcome to a place where parents and those affected with PANDAS can share information, hope and resources. Anyone affected by or interested in the disease can join.

Forum/Blog Name:  Strep Infection Associated with ADHD and Autism
Description:  PANDAS leads to autoimmune-mediated inflammation of the brain, and usually occurs after several bouts of Strep throat, but may manifest even if the parent cannot recall history of Streptoccal infection in their child.