What is PANDAS?
PANDAS, an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is a condition diagnosed in children when obsessive-compulsive disorder (OCD), tic disorders, or both suddenly emerge following a strep infection. Strep infections can include common illnesses like strep throat or scarlet fever.
A PANDAS diagnosis is considered when:
- OCD, a tic disorder, or both conditions suddenly appear after a streptococcal (strep) infection, such as strep throat or scarlet fever.
- Existing OCD or tic symptoms abruptly worsen after a strep infection.
The onset of symptoms is typically rapid and dramatic, often described as appearing “overnight and out of the blue.” These symptoms can encompass motor or vocal tics, obsessions, compulsions, or a combination. Beyond these core symptoms, children with PANDAS may also exhibit moodiness, irritability, anxiety attacks, and separation anxiety.
What are the Causes of PANDAS?
Strep bacteria, ancient microorganisms, employ a survival strategy within the human body by evading the immune system. They achieve this through “molecular mimicry,” displaying molecules on their cell walls that closely resemble molecules found in a child’s heart, joints, skin, and brain tissues. This mimicry allows strep to remain undetected for an extended period.
However, the immune system eventually recognizes these strep molecules as foreign. In response, the child’s immune system produces antibodies. Due to molecular mimicry, these antibodies not only target strep molecules but also the similar-looking human host molecules. This results in “cross-reactive” antibodies that mistakenly attack the mimicked molecules in the child’s own tissues. Research at the National Institute of Mental Health (NIMH) and other institutions indicates that in PANDAS, these cross-reactive antibodies can target the brain, leading to OCD, tics, and other neuropsychiatric symptoms associated with the disorder.
PANDAS in Adults: Is it Possible?
PANDAS is primarily recognized as a pediatric condition, typically appearing in children between the ages of 3 and puberty. Reactions to strep infections become less frequent after age 12, but researchers acknowledge that PANDAS, although rare, could still occur in adolescents. It is uncommon for adults to experience these post-strep neuropsychiatric symptoms for the first time, but this area requires further research.
While immune-mediated OCD might be possible in adolescents and adults, it is not yet fully understood or categorized as PANDAS in adults.
Recognizing PANDAS: Signs and Symptoms
How is PANDAS Diagnosed? The Clinical Diagnosis
PANDAS diagnosis is primarily clinical. Currently, there are no definitive lab tests to diagnose PANDAS. Healthcare providers rely on established diagnostic criteria to determine if a child’s symptoms align with PANDAS. The clinical presentation of the illness remains the key factor in diagnosis.
The diagnostic criteria for PANDAS include:
- Presence of OCD, a tic disorder, or both: The child must exhibit symptoms of OCD, a tic disorder, or both.
- Pediatric Onset: Symptom onset must occur between the ages of 3 and puberty.
- Episodic Symptom Severity: Symptoms follow an episodic pattern, with sudden onsets and exacerbations (explained in detail below).
- Association with Strep Infection: A link to a group A Beta-hemolytic strep infection, evidenced by a positive throat culture or a history of scarlet fever, must be present.
- Neurological Abnormalities: Associated neurological signs, such as hyperactivity or involuntary jerky movements, are often observed.
- Abrupt Symptom Onset or Worsening: Symptoms appear or worsen very suddenly.
Blood tests to confirm a recent strep infection may be conducted if symptoms have been present for more than a week. These tests help document a preceding strep infection but are not diagnostic of PANDAS itself.
Additional Symptoms During PANDAS Episodes
Yes, beyond OCD and tics, children experiencing PANDAS episodes often present with a range of additional symptoms, including:
- ADHD-like Symptoms: Symptoms resembling attention-deficit/hyperactivity disorder (ADHD), such as hyperactivity, inattention, and restlessness.
- Separation Anxiety: Excessive clinginess and difficulty separating from caregivers. For instance, a child may become distressed when in a different room from parents.
- Mood Changes: Irritability, sadness, emotional lability (unexplained or inappropriate laughing or crying).
- Sleep Disturbances: Trouble falling asleep or staying asleep.
- Urinary Issues: Nighttime bed-wetting, increased daytime urination, or both.
- Motor Skill Changes: Alterations in fine motor skills, such as changes in handwriting.
- Joint Pain: Complaints of joint pain.
Understanding Episodic Symptom Course in PANDAS
A defining characteristic of PANDAS is the episodic nature of symptoms. Children experience dramatic fluctuations in the severity of their OCD and tics. Unlike typical OCD or tic disorders where symptoms may be consistently present or fluctuate gradually, PANDAS involves sudden and significant symptom exacerbations followed by a slow, gradual improvement. Subsequent strep infections can trigger further abrupt worsenings of symptoms. These periods of increased symptom severity usually last for weeks to months.
Strep Throat, OCD, and Tics: Is it Always PANDAS?
No. It’s important to note that many children experience OCD, tics, or both, and strep throat is a common childhood illness. The average school-aged child may have two to three strep throat infections annually.
A PANDAS diagnosis is considered specifically when a clear and close temporal relationship exists between the abrupt onset or worsening of OCD, tics, or both, and a documented strep infection. If this pattern is observed across two or more episodes of OCD or tics in conjunction with strep, PANDAS may be a likely diagnosis.
Interpreting Elevated Anti-Strep Antibody Titers
An anti-strep antibody titer is a blood test measuring the level of antibodies produced by the body in response to a strep infection. An elevated titer indicates a previous strep infection within the past few months.
Elevated anti-strep titers are a normal immune response, showing the body has fought off a strep infection. The height of the titer elevation doesn’t necessarily correlate with the severity of PANDAS symptoms, and elevated titers are not inherently harmful. Antibodies remain in the body for varying durations after infection, sometimes for many months.
What is Considered an Abnormal Strep Titer?
Normal ranges for strep titers can vary slightly between labs. The National Institutes of Health (NIH) lab considers titers between 0 and 400 as normal. Other labs might set the upper limit at 150 or 200. It’s crucial to understand the specific reference range used by the lab performing the test to accurately interpret results. Always ask your healthcare provider for clarification on the lab’s normal range.
Seeking Expert Advice When Doctors Are Unfamiliar with PANDAS
If your child’s doctor is not knowledgeable about or dismissive of PANDAS, resources are available. Contact organizations like the International OCD Foundation (IOCDF) or the PANDAS Physicians Network (PPN) to find healthcare professionals experienced in PANDAS diagnosis and treatment.
Alt text: A young child sits on an examination table while a healthcare professional gently examines their throat, possibly checking for signs of strep throat as part of a PANDAS disease diagnosis.
Please Note: NIMH does not endorse or evaluate the qualifications of healthcare providers listed by external organizations. These resources are for informational purposes only and should not be considered medical advice. Always consult with a qualified healthcare professional for diagnosis and treatment of any medical condition.
PANDAS Treatment Options
Treating PANDAS: Antibiotics and Strep Infection Management
The primary treatment for acute PANDAS episodes, when a strep infection is still present, is antibiotics to eradicate the bacteria.
- Throat Culture: A throat culture is essential to confirm the presence of strep bacteria in the throat.
- Antibiotics: If the throat culture is positive, a course of antibiotics is typically effective in eliminating the strep infection and allowing PANDAS symptoms to lessen.
If a throat culture is negative, it’s important to consider occult (hidden) strep infections. These can include sinus infections (often strep-related) or strep infections affecting the anus, vagina, or urethral opening of the penis. While less common, these hidden infections can trigger PANDAS symptoms and persist longer, continuing to stimulate the production of cross-reactive antibodies. Treating strep in sinuses and other hidden sites may require longer courses of antibiotics compared to strep throat treatment.
Parent/Caregiver Tips During Antibiotic Treatment:
- Toothbrush Hygiene: Sterilize or replace toothbrushes during and after antibiotic treatment to prevent re-infection.
- Family Strep Screening: Consider asking your healthcare provider about throat cultures for family members to identify potential “strep carriers” who could be a source of re-infection.
Managing Neuropsychiatric Symptoms of PANDAS
Children with PANDAS-related OCD symptoms benefit from standard treatments for OCD, including medications, behavioral therapies like Cognitive Behavioral Therapy (CBT), or a combination of both. OCD is often most effectively treated with CBT and Selective Serotonin Reuptake Inhibitor (SSRI) medications. Tics can be managed with various medications as well.
Children with PANDAS may exhibit heightened sensitivity to medication side effects, particularly from SSRIs and other psychiatric medications. Therefore, a “start low and go slow” approach is crucial. Clinicians should begin with very low starting doses and gradually increase them, carefully monitoring for side effects. If PANDAS symptoms worsen with medication, the SSRI dosage should be promptly reduced. Abruptly stopping SSRIs or other medications is not recommended and could lead to difficulties.
Learn more about mental health medications for managing neuropsychiatric symptoms.
Plasma Exchange and Immunoglobulin (IVIG) for PANDAS
Plasma exchange or intravenous immunoglobulin (IVIG) may be considered for children with acute and severe PANDAS. Research suggests these treatments can improve overall functioning, reduce depression, stabilize emotional fluctuations, and lessen OCD symptoms. However, potential side effects such as nausea, vomiting, headaches, and dizziness exist.
Additionally, any invasive procedure carries a risk of infection. Therefore, plasma exchange and IVIG are generally reserved for severely ill PANDAS patients and should be administered by a qualified team of healthcare professionals experienced in these treatments.
Treating Elevated Strep Titers with Antibiotics: Is it Necessary?
No. Elevated strep titers alone do not warrant antibiotic treatment. They indicate a past strep exposure but don’t pinpoint when the infection occurred. Titers can remain elevated for months after an infection. Antibiotics are only recommended when there is evidence of an active strep infection, such as a positive rapid strep test or throat culture, not solely based on elevated titers.
Penicillin for PANDAS: Treatment and Prevention
Penicillin and other antibiotics primarily target the strep bacteria causing strep throat, not the PANDAS symptoms directly. Current research indicates that PANDAS symptoms are likely triggered by the antibodies produced by the body in response to strep, rather than the bacteria itself.
Researchers at NIMH have investigated prophylactic antibiotic use to prevent future PANDAS symptom exacerbations. However, current evidence is insufficient to recommend long-term antibiotic use for PANDAS prevention.
Tonsillectomy for PANDAS: Is it Recommended?
Current research does not support routine tonsillectomies for children with PANDAS. If tonsillectomy is considered for reasons such as recurrent tonsillitis, it is important to discuss the potential benefits and drawbacks with your child’s healthcare provider, considering the tonsils’ role in immune response and strep infections.
Alt text: A healthcare professional is shown talking to the parents of a child, likely discussing different treatment approaches and management strategies for their child’s PANDAS diagnosis.
Participating in PANDAS Clinical Research
Clinical trials are vital research studies exploring new strategies for preventing, diagnosing, and treating diseases and conditions like PANDAS. These trials aim to determine the effectiveness and safety of novel tests or treatments. While individual participants may benefit, the primary goal is to advance scientific knowledge for the benefit of future patients.
Researchers at NIMH and across the country conduct numerous clinical studies involving patients and healthy volunteers. Clinical trials have been instrumental in developing today’s improved treatment options. Consider contributing to future medical breakthroughs by discussing clinical trial participation with your doctor to understand potential benefits and risks and determine if a trial is suitable for you.
Learn more about clinical research and how to find clinical trials related to PANDAS.
Finding Help and Support for PANDAS
Behavioral Health Treatment Services Locator
The Substance Abuse and Mental Health Services Administration (SAMHSA) offers an online resource to locate mental health treatment facilities and programs. Find a facility in your state or explore additional resources for PANDAS support and treatment.
Questions to Ask Your Doctor About PANDAS
Engaging in open communication with your doctor and asking questions is crucial for optimal care. Building trust through dialogue leads to better healthcare outcomes, safety, and satisfaction. Visit the Agency for Healthcare Research and Quality website for helpful tips on communicating effectively with your healthcare provider.
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For More Information About PANDAS
- NIMH website: www.nimh.nih.gov
- MedlinePlus (National Library of Medicine): https://medlineplus.gov (Spanish: https://medlineplus.gov/spanish)
- ClinicalTrials.gov: www.clinicaltrials.gov (Spanish: https://salud.nih.gov/investigacion-clinica)
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U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
National Institutes of Health
NIH Publication No. 19-MH-8092
Revised 2019
