What are PANS & PANDAS?

While the physiological processes are the same, PANS and PANDAS are defined by different triggers. It’s important to understand that PANS and PANDAS are medical conditions brought on by a post-infectious trigger. This condition occurs when the body’s immune system mistakenly attacks healthy brain cells, leading to inflammation of the brain. In essence, it’s a misdirected immune response.

AN ESTIMATED 1 IN 200 CHILDREN AND YOUNG ADULTS ARE SUFFERING FROM PANS/PANDAS 

Below is an overview of each illness and treatments.

Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS)

PANS is a clinical diagnosis based on a child/young adult’s medical history and physical examination. Upon a complete evaluation, the symptoms cannot be better explained by another diagnosis. PANS can be triggered by infections, metabolic disturbances, and other inflammatory reactions. Infectious triggers include upper respiratory infections, influenza, sinus infections, mycoplasma pneumonia, Epstein-Barr Virus (Mono), Lyme disease and co-infections and COVID among others. PANS is an umbrella term for many triggers that create inflammation in the brain, leading a child/or young adult to exhibit behavioral, cognitive, and/or emotional changes.

PANS is typically characterized by an acute onset of obsessive-compulsive disorder (OCD) and/or restricted food intake, along with at least two out of seven of the following neuropsychiatric symptoms:

  • Anxiety

  • Depression

  • Emotional lability (rapid or dramatic changes in mood)

  • Irritability

  • Aggression, and/or severe oppositional behaviors

  • Behavioral (developmental) regression

  • Sudden deterioration in school performance (often a decline in math and handwriting abilities)

  • Motor or sensory abnormalities

  • Sleep disturbances

  • Enuresis, or urinary frequency

PANS does not require a known trigger, although it is believed to be triggered by one or more pathogens.

Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS)

PANS/PANDAS symptoms can range from mild to severe. In mild cases, a child might function well enough to continue to attend school. Moderate symptoms might cause a child to miss significant days of school or even become homebound. In severe cases, PANS/PANDAS symptoms can become life-threatening. After the initial onset and treatment, PANS/PANDAS patients can experience a frustrating relapse of symptoms. Initial triggers may differ from secondary triggers. During each recurrence, symptoms can worsen, and new ones may manifest.

PANDAS is a subset of PANS. It is triggered by group A Strep (GAS) infections, which can occur in many parts of the body (e.g., sinuses and anus)—not just the throat. The onset of PANDAS symptoms can occur within days or months of contracting strep. Like PANS, PANDAS is a clinical diagnosis defined by the following criteria:

  • Presence of significant obsessions, compulsions, and/or tics

  • Abrupt onset of symptoms or a relapsing-remitting course of symptom severity

  • Pre-pubertal onset

  • Association with streptococcal infection

  • Association with other neuropsychiatric symptoms, including:

    • Anxiety

    • Restricted food intake 

    • Emotional lability (rapid or dramatic changes in mood)

    • Urinary frequency

    • Sleep disturbances

Treatment for PANS/PANDAS

Treatment for PANS/PANDAS usually involves addressing the underlying infection through antibiotics & antivirals. Other treatments for PANS/PANDAS include nonsteroidal anti-inflammatory drugs (NSAIDs), steroids, and immune modulating therapies such as  intravenous immunoglobulin therapy (IVIg), Rituximab, and plasmapheresis.

Unfortunately, many children and young adults with PANS/PANDAS are misdiagnosed with a psychiatric illness and prescribed psychotropic medications, rather than being evaluated and treated for the root infection. By bringing more education and awareness to communities about PANS/PANDAS, The Look. Foundation aims to erase misconceptions about the illnesses and promote appropriate diagnosis and treatment for more children.

“We can’t thank the Look. Foundation enough. They have literally changed our lives and helped us see that there’s hope. In a lonely world of this illness it’s nice to become part of a family.”

— Look. Grant Recipient