This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Monday, January 12, 2015

PANDAS/PANS

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep, and refers to a syndrome of neuropsychiatric symptoms that results from a disordered immune response triggered by Group A Strep infection.  It is essentially "rheumatic fever" of the brain. Since it's discovery, it has been found that actually pretty much any pathogen can trigger this syndrome, so the broader term for this disorder- PANS- is now often used instead (although the two tend to be used interchangeably).  PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. From the PANDAS network site "PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is when an infectious trigger, environmental factors, and other possible triggers create a misdirected immune response (which) results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, severe restrictive eating, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and more."

I have another post that gives a lot more information about the basics of PANDAS/PANS here.

General sources for information and support:

Q and A from the Stanford PANS/PANDAS Clinic site

FAQs about PANDAS from the NIH site

A word about PANDAS from Tom Insel, MD, the director of NIMH

This page from The International OCD Foundation
has more in depth information about PANDAS, including testing for it as well as treating it.

PANDAS Network

Saving Sammy

PANDAS in adults

What does PANDAS "look like"?

When we hear behavioral changes described as above, sometimes it can be hard to visualize what this would really look like, how these behavioral and thought changes would impact a person's daily life.  Some people don't understand that this is not just a case of a child having a "tantrum", that this behavior is not something the child is in control of so punishment is especially cruel.  These children are not "bad", they are sick, and they need help.  I've collected some videos of various examples of how PANDAS can manifest on a daily basis-  this is especially helpful  given that PANDAS symptoms and intensity can vary so much from one person to another, and in the same person over time.  This educational video about Tourette's presents a wide range of tics including motor tics and vocal tics.  Here are some additional videos:  Head jerk/tic,

Symptoms of PANDAS, diagnosis, and evaluation:

List of symptoms on the PANDAS network site

The PANDAS Controversy: Why (and How) Is It Still Unsettled?
this paper about the ongoing controversy in the medical field about the legitimacy of PANDAS provides an excellent overview of the science behind the testing and treatment of PANDAS, as well as the history of the diagnosis.

The Consensus Statement from the 2013 Consensus Conference held at Stanford with guidelines for
evaluation and diagnosis is now online.  The abstract can be viewed here:
Clinical Evaluation of Youth with Pediatric Acute Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference
This press release about the paper gives a little more information.

Characterization of the Pediatric Acute-Onset Neuropsychiatric Syndrome Phenotype

Disordered Eating and Food Restrictions in Children with PANDAS/PANS

From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) (this is a white paper by Dr Susan Swedo)

I am including this page from the Harvard Medical School site because it includes a series of drawings that show just how much fine motor skills can be affected during an episode of PANDAS.

Causes:

Non-strep infections and non-infectious causes

Lyme Disease is a possible cause of PANDAS

This is a video of one of the authors of this paper expanding on the ideas found in the paper.

Lyme disease and pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS): an overview




Testing:
What you need to know about testing for strep

This study looked at the details of the human immune response to GAS
(group A strep) and found some interesting things that can help guide effective testing.

The Cunningham Panel

More information about The Cunningham Panel

Additional immunology workup
(may find underlying immune function problems that have contributed to the PANDAS infection)

Treatment:

Antibiotic treatment

Antibiotic Treatment Attenuates Behavioral and Neurochemical Changes Induced by Exposure of Rats to Group A Streptococcal Antigen
"Our results reinforce the link between exposure to GAS (group A strep) antigen, dysfunction of central dopaminergic pathways and motor and behavioral alterations. Our data further show that some of these deleterious effects can be attenuated by antibiotic treatment, and supports the latter’s possible efficacy as a prophylactic treatment in GAS-related neuropsychiatric disorders."

IVIG (intravenous immunoglobulin)

Plasmapheresis

An Integrative Medicine Approach to PANS/PITAND/PANDAS

SSRIs can be problematic in PANDAS

Zinc Starves Deadly Streptococcus Bacteria
"In the study published in the journal Nature Chemical Biology, the researchers describe how zinc 'jams shut' a protein transporter in the bacteria so that it cannot take up manganese, an essential metal that Streptococcus pneumoniae needs to invade and cause disease in their human hosts."

Case stories:

Resurrecting Noah

The case of Tessa Gallo, who was misdiagnosed with Bipolar Disorder

This episode of the t.v. show Mystery Diagnosis documents the case of Sammy (his mother's site about PANDAS is listed above), whose case of PANDAS was very severe.

Charlie's story

Sera's PANDAS story

More information and resources:

Informational videos and conference presentations from PANDAS Network

Treating the brain and the immune system in tandem

Sydenham's Chorea:

Dopamine Receptor Autoantibodies Correlate with Symptoms in Sydenham's Chorea

Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea.