Understanding PANDAS | PANDAS Network (2024)

What is PANDAS/PANS?

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) occur after an infection, most commonly a strep infection. Brain inflammation occurs when the body’s immune system mistakenly attacks healthy brain cells, leading to autoimmune processes that affect central nervous system function. An affected child generally has a sudden, dramatic change in personality, displayed as obsessive-compulsive disorder (OCD), anxiety, tics or other abnormal movements, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating and more.

The Impact

PANDAS/PANS is being increasingly recognized as a form of autoimmune encephalitis (AE)—more specifically post-infectious basal ganglia encephalitis (BGE). There are a variety of forms of AE, and they should be considered in a differential diagnosis to PANDAS/PANS. Symptoms can cause serious debilitation and extreme neurological changes in AE, including seizures and/or problems with balance, speech or vision. Psychiatric symptoms also occur and can include aggression, inappropriate or compulsive behaviors or fear. In general, testing for clinical features of AE includes testing for autoantibody markers in the cerebral spinal fluid (CSF)—but because this is a new field of treatment, CSF can be negative for aberrant, disease-inducing illness. This is why research is developing rapidly for PANDAS/PANS or BGE and all other forms of AE in major medical centers around the world.

To better understand the spectrum of PANDAS / PANS and autoimmune encephalitis (AE), watch this brief video from psychiatrist Dr. Barbara Hale-Richlen.

The severity of symptoms and the onset of PANDAS/PANS can vary from patient to patient, but the symptoms usually present suddenly and intensely. Symptoms can get better and then get worse again, presenting in what’s known as an episodic manner.

Possible PANDAS/PANS symptoms can include:

• Sudden, acute onset of OCD.
• Restrictive eating habits.
• Irritability or aggressive behavior.
• Extreme moodiness or depression.
• Deterioration of motor skills.
• Tics and unusual movements.
• Visual or auditory hallucinations.
• Sensitivity to light, sound and touch.
• Sleep disturbance or fatigue.

PANDAS/PANS is a rare and lesser-known disorder, and doctors often mistake it for other conditions. The best way to get a diagnosis is to meet with a specialist. A doctor will make a clinical diagnosis based on testing for infectious triggers, together with signs, symptoms, medical history and laboratory findings that rule out other known neurological or medical disorders. Providing a thorough medical history and description of symptoms can help aid the diagnosis.

PANS criteria include sudden onset of obsessive-compulsive disorder (OCD) or severely restricted food intake. Two of the following seven criteria are also required to make a diagnosis:

• Anxiety.
• Emotional lability (mood swings) or depression.
• Irritability, aggression or oppositional behavior.
• Behavioral (developmental) regression.
• Sudden deterioration in school performance.
• Motor or sensory abnormalities including tics or involuntary movements.
• Somatic signs and symptoms, like sleep disturbances or bedwetting (enuresis).

PANDAS is a subcategory of PANS. This was an earlier research definition used to explain a Group A strep-related infectious onset. PANDAS has five distinct criteria for diagnosis:

1. Abrupt onset of OCD, or dramatic, disabling tics.
2. An episodic symptom course, or relapsing-remitting course of severity.
3. Pre-pubertal onset.
4. Presence of neurologic and neuropsychiatric abnormalities.
5. Occurrence of a strep infection before symptom onset.

When treated in a timely fashion, PANDAS/PANS appears to be stopped and potentially cured with prompt immune modulation interventions. Some children continue to relapse and require additional testing. Research following children over the years into adulthood is underway to ascertain this evidence. It is known that early treatment of PANDAS is important to reduce the duration and intensity of a patient’s symptoms. Untreated, PANDAS/PANS can cause permanent psychological and neurological issues.

When treating PANDAS/PANS, it is important to get rid of strep infection or other infections completely. Exposure to illnesses from family and friends needs to be avoided while the child is healing. Antibiotic treatment can cure a current strep infection, and used as prophylaxis can prevent new infections while simultaneously calming the autoimmune processes affecting the brain. Strep or other infections can reoccur while healing, and PANDAS/PANS episodes tend to get longer and worse after each infectious recurrence. Therefore, diligence to prevent infections while healing is important. Once healed and infections eradicated, the child usually develops a normal autoimmune response and no longer has symptom flares.

Methods of treating PANDAS/PANS may include:

• Antibiotics to treat and prevent strep or other bacterial infections
• Antiviral if viral infections are persistent
• Intravenous immunoglobulin treatments
• Plasmapheresis (Apheresis) or Plasma Exchange (PEX), a process during which the harmful autoantibodies are removed from the blood system
• Steroids, which can reduce the inflammation occurring in the child’s brain
• Tonsillectomy and adenoidectomy where the chronic infection is reoccurring
• Cognitive behavioral therapy and/or exposure and response prevention

Support
Our Mission

Help us continue to support the children and adults living with PANDAS/PANS.