PANDAS

Title

Other Names:

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections; Pediatric autoimmune neuropsychiatric disorders associated with Streptococcus infections; Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus; Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections; Pediatric autoimmune neuropsychiatric disorders associated with Streptococcus infections; Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus; Pediatric autoimmune disorders associated with Streptococcus infections See More

Categories:

Nervous System Diseases

Summary Summary

PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. It is used to describe a condition in children whose symptoms of obsessive-compulsive disorder (OCD) or a tic disorder (i.e. Tourette syndrome) are worsened by group A streptococcal (GAS) infections. The underlying cause of PANDAS is unclear, but studies suggest that a strep infection causes an abnormal immune response resulting in neuropsychiatric symptoms. The association between PANDAS and GAS is controversial because the cause has not been proven. Management is centered on providing antibiotics for GAS infection, and medication or behavioral therapy for neuropsychiatric symptoms.^[1]^[2]

Last updated: 7/5/2016

Symptoms Symptoms

PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. It describes the abrupt onset or worsening of symptoms in children who have obsessive-compulsive disorder or a tic disorder (i.e. Tourette syndrome), following a group A streptococcal infection (strep infection). Following a strep infection, children affected by PANDAS typically experience a sudden onset of motor or vocal tics; obsessions; and/or compulsions. These severe symptoms typically last from several weeks to several months. After a gradual improvement, children may not experience any additional problems until they contract another strep infection.^[3]^[4]^[5]

Children may also experience the following signs and symptoms during a PANDAS episode:^[3]^[5]

Moodiness and irritability
Separation anxiety
ADHD symptoms
Sleep disturbances
Night-time bed wetting and/or day-time urinary frequency
Fine motor changes (handwriting)
Joint pain
Concentration difficulties and loss of academic abilities
Developmental regression (i.e. temper tantrums, "baby talk")

Last updated: 3/30/2015

Cause Cause

Although the exact underlying cause of PANDAS has not been proven, studies suggest that it may be an autoimmune disorder. Normally, when a person is exposed to bacteria, the immune system makes proteins called antibodies to fight off the infection. In autoimmune disorders, the body's immune system mistakenly attacks and destroys its own, healthy body tissue.^[6] PANDAS may occur when a group A streptococcal infection (strep infection) triggers an abnormal immune response, causing the body to mistakenly attack the tissues of the central nervous system (brain and spinal cord).^[6] However, the role of autoimmunity in PANDAS is controversial.^[1]

Last updated: 7/5/2016

Diagnosis Diagnosis

A diagnosis of PANDAS is based on the presence of the following:^[4]^[6]

Obsessive-compulsive disorder or a tic disorder (i.e. Tourette syndrome)
Symptoms develop before age 12
Abrupt onset of symptoms and "episodic" course (relapses are separated by periods of time in which children have less severe or no symptoms)
Association with group A streptococcal infection (in some cases, the affected person has no obvious symptoms of a strep infection; however, a throat culture and/or blood tests may show evidence of a current or recent infection)
Association with other neuropsychiatric symptoms (i.e. separation anxiety, ADHD, developmental regression, etc)

There are currently no tests available to confirm a diagnosis of PANDAS.

Last updated: 3/31/2015

Treatment Treatment

The treatment of PANDAS is symptomatic. Children who are diagnosed with a group A streptococcal infection are typically treated with antibiotics whether or not they develop symptoms of PANDAS. Obsessive-compulsive disorders are usually managed with medications (i.e. SSRI medications such as fluoxetine, fluvoxamine, sertaline, or paroxetine) and cognitive behavioral therapy. Tic disorders are often treated with a variety of medications, as well.^[4]^[5]

Some researchers suspect that therapies such as plasmapheresis and/or intravenous immunoglobulin (IVIG), which are often used to treat autoimmune disorders, may be a treatment option for children with PANDAS. Plasmapheresis is a procedure that removes antibodies from the blood. IVIG can sometimes be used to alter the function or production of abnormal antibodies. Although some studies have demonstrated that both of these therapies are effective for the treatment of severe, strep triggered OCD and tics, a number of the children in these studies experienced severe side-effects. Thus, these treatments are often reserved for severely affected children who do not respond to other therapies.^[4]^[5]

Last updated: 3/31/2015

Find a Specialist Find a Specialist

If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.

If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.

You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.

Healthcare Resources

The PANDAS Network maintains a list of healthcare professionals in the United States that cover PANS/PANDAS. They also have a list of International Providers.

Statistics Statistics

The incidence and prevalence of PANDAS are not known, although it is rare. In one prospective study, only 10 cases were identified among 30,000 throat cultures (1 in 3000) positive for group A streptococci (GAS). Since then, the annual incidence has ranged between 0 per 10,000 cultures to 10 per 30,000 cultures, depending upon the strain of GAS and other factors. Despite its rarity, some researchers suggest that it may account for ≥10% of childhood-onset obsessive-compulsive disorder (OCD) and tic disorders.^[1]

Last updated: 7/5/2016

Do you have updated information on this disease? We want to hear from you.

Research Research

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

ClinicalTrials.gov lists trials that are related to PANDAS. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Organizations Organizations

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

Child Mind Institute
445 Park Avenue
New York, NY 10022
Telephone: (212) 308-3118
Website: http://childmind.org/
International OCD Foundation
18 Tremont Street, Suite 308
Boston, MA 02108
Telephone: (617) 973-5801
Fax: (617) 973-5803
E-mail: info@iocdf.org
Website: https://iocdf.org/
PANDAS Network
655 Oak Grove Avenue #1373
Menlo Park, CA 94026
E-mail: pandasnetwork@gmail.com
Website: http://pandasnetwork.org
PANDAS/PANS Advocacy & Support
212 Tupelo Avenue
Naperville, IL 60540
Telephone: 630-479-7143
E-mail: service@pas.care
Website: http://www.pas.care/
Contact form: http://www.pas.care/contact.html

Organizations Providing General Support

American Autoimmune Related Diseases Association (AARDA)
22100 Gratiot Avenue
Eastpointe, MI 48021
Toll-free: 800-598-4668
Telephone: 586-776-3900
Fax: 586-776-3903
E-mail: aarda@aarda.org
Website: https://www.aarda.org/

Do you know of an organization? We want to hear from you.

Learn More Learn More

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

The International OCD Foundation website provides advice for practitioners and parents as well as a fact sheet about PANDAS.
The National Institute of Mental Health (NIMH) has information on this topic. NIMH is part of the National Institutes of Health and is dedicated to understanding, treating, and preventing mental illnesses.
The PANDAS Network offers an information page on PANDAS. Please click on the link to access this resource.

In-Depth Information

The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
PubMed is a searchable database of medical literature and lists journal articles that discuss PANDAS. Click on the link to view a sample search on this topic.

News & Events News & Events

NCATS Co-Sponsored Conferences

Autoinflammation 2013: The Seventh International Congress of FMF and Autoinflammatory Diseases Wednesday, May 22, 2013 - Sunday, May 26, 2013
Location: Lausanne, Switzerland
Description: The goals of this meeting include the exchange of clinical and scientific information regarding the autoinflammatory diseases. This is likely to result in improvements in the diagnosis and treatment of these diseases. Past Congresses have resulted in new scientific collaborations, development of registries for patients with specific autoinflammatory disorders, and the initiation of multicenter clinical trials.

Contact: Daniel Kastner, M.D., Ph.D., 301-496-8364kastnerd@nih.gov

Co-funding Institute(s): National Human Genome Research Institute, Office of Rare Diseases Research

Related Diseases Related Diseases

The following diseases are related to PANDAS. If you have a question about any of these diseases, you can contact GARD.

Pediatric acute-onset neuropsychiatric syndrome

GARD Answers GARD Answers

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

I have three children who have been treated for PANDAS and PANS successfully, on several occasions. I am a nursing student and for my research paper, I chose to write about PANDAS because I am passionate about the subject, having faced tremendous difficulty in getting help for my children. I am wondering if you know about the prevalence and incidence of PANDAS, as I am not able to find much information about how many children are affected. I appreciate any help you can give me. See answer

Have a question? Contact a GARD Information Specialist.

References References

Michael E Pichichero. PANDAS: Pediatric autoimmune neuropsychiatric disorder associated with group A streptococci. UpToDate. Waltham, MA: UpToDate; June, 2016;
PANDAS: Fact Sheet about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. NIMH. August, 2015; http://www.nimh.nih.gov/health/publications/pandas/index.shtml.
PANDAS: Frequently Asked Questions about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. National Institute of Mental Health. Accessed 3/30/2015.
Michael E Pichichero, MD. PANDAS: Pediatric autoimmune neuropsychiatric disorder associated with group A streptococci. UptoDate. July 2013; Accessed 3/30/2015.
Information About PANDAS. National Institute of Mental Health. Accessed 3/30/2015.
Williams KA, Swedo SE. Post-infectious autoimmune disorders: Sydenham's chorea, PANDAS and beyond. Brain Res. October 2014; [epub ahead of print]:Accessed 3/31/2015.