Aspire: “ We aspire to improve the lives of children and adults affected by PANS/PANDAS and other immune-related encephalopathies by closing the gap between symptom onset and access to treatment and support.
“There is clinical urgency to learn about PANS/PANDAS to help close the gap between the onset of symptoms and the start of appropriate treatment to reduce suffering and achieve remission.” From ASPIRE – the advocacy group of PANS and PANDAS.
#LightUp4PANS raises awareness of PANS and PANDAS and the need for early recognition, knowledgeable healthcare providers, access to appropriate treatment, and continued research.” Is there a green light in your town ?
What is PANS, what is PANDA?
PANS – Pediatric Acute-Onset Neuropsychiatric Syndrome
PANDAS – Pediatric Autoimmune Neuropsychiatric Syndrome Associated with Streptococcus
PANS is an acronym for Pediatric Acute-Onset Neuropsychiatric Syndrome. PANS is a clinical syndrome defined by the sudden encephalitic-like onset of obsessive-compulsive symptoms and/or severe eating restrictions and at least two concurrent cognitive, behavioral, or neurological symptoms. PANS has multiple etiologies and disease mechanisms with no age restriction for diagnosis.
- Anxiety, Separation Anxiety
- Emotional Lability and/or Depression
- Irritability, Aggression, and/or Severe Oppositional Behaviors
- Behavioral (Developmental) Regression
- Sudden Deterioration in School Performance
- Motor or Sensory Abnormalities, including Tics
- Somatic Signs and Symptoms, including Sleep Disturbances, Enuresis, or Urinary Frequency/Urgency
PANS can be triggered by infections, metabolic disturbances, psychosocial stress, and other inflammatory reactions. Infectious triggers include upper respiratory infections, influenza, recalcitrant sinus infections, mycoplasma pneumonia, and Lyme borreliosis, among others.
PANDAS, a subset of PANS, stands for Pediatric Autoimmune Neuropsychiatric Syndrome Associated with Streptococcus infections. Group A Strep (GAS) is the incitatory trigger. Sydenham’s Chorea/Acute Rheumatic Fever is the prototype disorder. Please note GAS infections can occur in many parts of the body – not just the throat. The onset of symptoms can occur within days of exposure to or contracting strep or within several months of the inciting infection.
- Presence of OCD and/or tics, particularly multiple, complex or unusual tics
- Age Requirement (Symptoms of the disorder first become evident between 3 years of age and puberty)
- Acute onset and episodic (relapsing-remitting) course
- Association with Neurological Abnormalities
Comorbid neuropsychiatric symptoms are universally present in PANDAS, similar to the diagnostic criteria for PANS with similarly abrupt onset/exacerbation as the primary symptoms of PANDAS. In particular, the somatic symptoms such as urinary frequency, mydriasis, and insomnia, help differentiate PANDAS from Tourette syndrome or non-PANDAS OCD.
