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 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. Here are some videos that show what specific symptoms such as tics can look like, how the disorder can develop, and also how the entire disorder can manifest in a child:
What Does PANDAS/PANS really look like? Watch Our PANS Story
Caroline's Journey to Recovery Part II: PANDAS
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
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
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)
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)
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."
PANDAS, Our True Story Of Recovery
(This family used essential oils in addition to antibiotics and steroids to bring about recovery)
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.
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
Dopamine Receptor Autoantibodies Correlate with Symptoms in Sydenham's Chorea
Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea.