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100

What does PANDAS stand for?

Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep

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What are the neurological symptoms and signs of PANDAS?

Neurological symptoms that have been reported to be associated with PANDAS include:

  • Changes in motor skills (muscle movements), such as problems with handwriting.
  • Difficulty concentrating or learning.
  • Poor performance in school.
  • Reduced coordination.
  • Sensitivity to light and sound.
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What are the most common PANDAS symptoms?

The most common symptoms reported are tics and obsessive-compulsive disorder-like behavior.

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What if my doctor doesn't know what PANDAS is, or doesn't want to treat or diagnose it? What other resources are out there for PANDAS?

Contact the International OCD Foundation  or the PANDAS Physicians Network  to find a doctor who may be knowledgeable about PANDAS. 

National Institutes of Mental Health (NIMH)Provides basic information, diagnostic and treatment information, and a list of research papers


PANDAS Physicians Network (PPN)Helps medical professionals understand the diseases and offers an archive of published studies


International OCD Foundation (IOCDF)Offers detailed information about PANDAS/PANS from diagnosis to treatment, and can help you find a doctor who may be knowledgeable about PANDAS


Substance Abuse and Mental Health Services Administration Provides an online resource for locating mental health treatment facilities and programs


RareShare: The Global Platform for Connecting Rare Disease PatientsAllows you to request that PANS/PANDAS information be sent directly to a clinician


PANDAS PANS Support GroupsHelps you find U.S. and international support groups


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How can you prevent PANDAS?

The likelihood of PANDAS is reduced by limiting the spread of Group A Strep. The spread of Group A Strep can be reduced by following these tips:

  • Wash your hands often with soap and water for 20 seconds, and help young children do the same. If soap and water are not available, use an alcohol-based hand sanitizer. Wash your hands especially after coughing and sneezing, before and after caring for an ill person and before preparing foods and before eating.
  • Cover your nose and mouth with a tissue or shirt sleeve (not your hands) when you cough or sneeze and then throw the tissue in the trash.
  • Avoid touching your eyes, nose, and mouth with unwashed hands.
  • Avoid close contact (such as kissing, hugging, sharing cups, or sharing eating utensils) with people who are sick, and when you are sick.
  • Clean and disinfect frequently touched surfaces, such as toys and doorknobs, especially if someone is sick.
  • Persons with Group A Strep infections should stay home from work, school, or daycare until they have taken antibiotics for at least 24 hours.

A vaccine for Group A Strep is not available.

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What is PANDAS?

It describes a group of conditions thought to affect select children who’ve strep infections, such as strep throat or scarlet fever. There have been some reports of the development of tics, obsessive-compulsive behavior and other mental and neurological symptoms after PANDAS, although a clear link hasn’t yet been established.

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What causes PANDAS?

Some believe that PANDAS occurs when your child’s immune system produces antibodies to fight the bacteria that caused a strep infection. But the antibodies may also mistakenly attack healthy cells in other tissues because the cells mimic those of the strep infection. Some believe that antibodies affect tissues in your child’s brain, leading to the psychological and neurological symptoms sometimes reported.

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Can adults get PANDAS?

PANDAS is considered a pediatric disorder and typically first appears in childhood from age 3 to puberty. Reactions to strep infections are rare after age 12, but researchers recognize that PANDAS could occur, though rarely, among adolescents. It is unlikely that someone would experience these post-strep neuropsychiatric symptoms for the first time as an adult, but it has not been fully studied.

It is possible that adolescents and adults may have immune-mediated OCD, but this is not known.

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What are the main 3 treatments for PANDAS?

Antimicrobials, immunomodulatory therapy, and psychotherapeutic/behavioral therapy

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Can PANDAS be cured?

Individuals with PANS and PANDAS often have relapsing and remitting symptoms. Some are symptom free for months or years or may even have only one PANS/PANDAS episode. There is currently no cure for PANS/PANDAS and no treatment that helps all patients.

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Who gets PANDAS?

Of those who’ve reported symptoms after PANDAS, most are between the ages of 3 and 12. Some healthcare providers think it’s more common in children assigned male at birth than those assigned female at birth. They also think that a child may be at a higher risk of PANDAS if they have:

  • Frequent group A streptococcal infections, such as strep throat or scarlet fever.
  • Family history of autoimmune diseases or rheumatic fever.
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What is the difference between PANS and PANDAS?

PANS stands for “pediatric acute-onset neuropsychiatric syndrome.” Some providers think PANDAS is a type of PANS. Both are thought by those individuals to cause similar symptoms that come on suddenly. But PANDAS is thought to be related to a strep infection, whereas PANS is thought to result from other infections such as Lyme disease or influenza.

PANDAS is a subgroup of PANS.

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How are people diagnosed with PANDAS? What's the criteria?

The diagnostic criteria are:

  • Presence of OCD, a tic disorder, or both
  • Pediatric onset of symptoms (i.e., age 3 to puberty)
  • Episodic course of symptom severity (see information below)
  • Association with group A Beta-hemolytic strep infection, such as a positive throat culture for strep or history of scarlet fever
  • Association with neurological abnormalities, such as physical hyperactivity or unusual, jerky movements that are not in the child’s control
  • Very abrupt onset or worsening of symptoms

If the symptoms have been present for more than a week, blood tests may be done to document a preceding strep infection.

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What is immunomodulatory therapy?

Immunomodulatory therapy, also known as immune system modulation, is a type of drug treatment that changes the body's immune response. Immunomodulatory agents, or substances, can either stimulate or suppress the immune system, which can help the body fight infection, cancer, and other diseases.

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Is it possible to have PANDAS and not know it?

Unfortunately, many children go untreated, sometimes experiencing debilitating symptoms for years until finding the cause and visiting a PANDAS specialist.

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How common is PANDAS?

It's relatively rare. It affects 1 in 200 children in the United States.

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How is PANDAS diagnosed?

There isn’t a test to diagnose PANDAS. A healthcare provider will perform a physical exam and evaluate your child’s symptoms.

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What other symptoms are associated with PANDAS?

Children with PANDAS often experience one or more of the following symptoms in conjunction with their OCD or tic disorder:

  • Symptoms of attention-deficit/hyperactivity disorder (ADHD), such as hyperactivity, inattention, or fidgeting
  • Separation anxiety (e.g., child is "clingy" and has difficulty separating from his or her caregivers; for example, the child may not want to be in a different room in the house from his or her parents)
  • Mood changes, such as irritability, sadness, or emotional lability (i.e., tendency to laugh or cry unexpectedly at what might seem the wrong moment)
  • Trouble sleeping
  • Nighttime bed-wetting, frequent daytime urination, or both
  • Changes in motor skills, such as changes in handwriting
  • Joint pains
400

If I have PANDAS, does that mean I need my tonsils removed?

Current research does not suggest that tonsillectomies for children with PANDAS are helpful. If a tonsillectomy is recommended because of frequent episodes of tonsillitis, it would be useful to discuss the pros and cons of the procedure with your child's health care provider because of the role that the tonsils play in fighting strep infections.

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What part of the body does PANDAS affect the most?

The brain.

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What are the psychological symptoms and signs of PANDAS?

Symptoms and signs of PANDAS have been reported to vary widely from child to child and can involve a combination of psychological and neurological conditions. The symptoms are thought to start suddenly and occur in episodes. They seem to last for a few days or weeks, then go away and return. Psychological symptoms that have been reported to occur with PANDAS have included: 

  • Anxiety or depression.
  • Bedwetting.
  • Changes in mood or personality, especially sudden rage or irritability.
  • Difficulty sleeping.
  • Disinterest in food.
  • Fidgeting and symptoms similar to attention-deficit/hyperactivity disorder (ADHD).
  • Obsessive-compulsive disorder-like behavior.
  • Separation anxiety.
  • Tics similar to those of Tourette syndrome.
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How is PANDAS treated?

Treatment for PANDAS may include:

  • Antibiotics: Children with an active strep infection, including symptoms characteristic of the infection (such as fever, sore throat, pain with swallowing), need antibiotics.
  • Cognitive behavioral therapy (CBT): CBT is a form of psychotherapy. It can help your child better manage mental and emotional difficulties.


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Does everyone with OCD, step throat, and ticks have PANDAS?

No. Many children have OCD, tics, or both, and almost all school-aged children get strep throat at some point. In fact, the average grade-school student will have two or three strep throat infections each year.

PANDAS is considered as a diagnosis when there is a very close relationship between the abrupt onset or worsening of OCD, tics, or both, and a strep infection. If strep is found in conjunction with two or three episodes of OCD, tics, or both, then the child may have PANDAS.

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How soon do PANDAS symptoms appear?

Children who develop PANDAS usually have a sudden onset of symptoms. The symptoms usually become more intense within 24–48 hours after the onset of their Group A Strep infection.

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Is PANDAS genetic? Can I inherit it from my parents?

Yes, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS) is thought to have a genetic predisposition. However, there is no single gene that causes PANDAS, and the genes involved are highly varied. Some family factors that may be associated with PANDAS include:

  • A history of autoimmune diseases
  • Immune deficiency
  • Mental health conditions
  • Certain medical conditions in family members, especially mothers and siblings