PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) / PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders)

What is PANS?

PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) is a more recently recognized disease process which has also been known by other names—PITANDS and PANDAS. Unfortunately, despite clear evidence of the pathogenesis of PANS/PANDAS and furthermore the quick response to appropriate treatment, there remains a large number of mental health professionals who don’t or won’t recognize PANS/PANDAS as an actual illness.  This is unfortunate because purely behavioral or pharmaceutical management is not particularly effective management.  It requires knowledge and treatment of the infectious and immune factors of PANS/PANDAS that result in effective treatment, remission and ultimately the resolution of the illness.

PANS/PANDAS is very similar to Rheumatic Fever, as both begin with an infection, yet it is the antibody made by the patient’s immune system meant to bind the infection that ultimately is the problem. Due to a phenomenon called molecular mimicry, the antibody doesn’t just bind the desired infectious agent,  it also binds to tissue in the body causing inflammation, damage and dysfunction. In Rheumatic Fever, the antibody binds primarily the heart where in PANS/PANDAS it binds primarily to the basal ganglia in the brain.  Like Rheumatic Fever, PANS/PANDAS is primarily a clinical diagnosis with sometimes supportive diagnostic testing.   In Rheumatic Fever, heart damage can easily be found by echocardiography; however, in the case of PANS/PANDAS there currently isn’t adequate testing that can easily confirm the presence of PANS/PANDAS.   Therefore, the key in seeking help for PANS/PANDAS is finding a provider with experience in evaluating and treating patients with PANS/PANDAS.

Although PANS starts as an infection, the key factor to recognize is that this is an immune illness (molecular mimicry) and it is the immune attack of the brain causing the symptoms. It is not an infection of the brain.  Symptoms may remit with time; however, they recur with re-exposure to the triggering infection which may be re-infection or constant exposure to a carrier.  Exposure to the triggering microbe results in production of more antibody which increases the immune attack of the brain and thereby symptoms.  This is a very important concept to grasp because it explains why children with PANS will flare even when testing negative for triggering infection.  They can be exposed to their triggering infection (the triggering “antigen” for their immune system) by a family member at home, a classmate at school, or a colleague at work.

What are the symptoms of PANS?

For a pediatric patient to be diagnosed with PANS/PANDAS (for an Adult patient to have PANS/PANDAS their onset of illness must have occurred when they were a child) the criteria below need to met and cannot be described better by another medical or neurologic disorder:

• An acute and abrupt onset of obsessive and compulsive symptoms, often diagnosed as OCD – Obsessive Compulsive Disorder, and/or severe restriction in food intake. Germaphobia (fear of germs/ contamination), repeated hand washing, trouble swallowing and fear of vomiting are examples of these symptoms.
• Concomitantly, the acute and abrupt onset of additional neurospychiatric symptoms occur, usually with two or more being present:
  • Tics or involuntary movements
  • Anxiety, especially separation anxiety, and/or Depression
  • Irritability, Aggression and/or Oppositional behaviors
  • Emotional Lability
  • Behavioral or Developmental Regression
  • Somatic Symptoms – sleep disturbance, urinary frequency and/or enuresis
  • Abrupt Decline in Academic/ School Performance – inattention. poor focus, poor memory, and/or loss of math skills
  • Neuromuscular Symptoms – deterioration of handwriting
  • Sensory Sensitivies

It is important to know that pediatric patients with symptoms very similar to the criteria above, though potentially of more gradual onset, may also have a PANS-like illness and may respond to similar treatment.

For more detailed descriptions of symptoms please see the resources below.

How is PANS/PANDAS diagnosed?

PANS/PANDAS is diagnosed by the patient’s characteristic clinical history and can be aided with laboratory testing, a throat culture and/or testing for anti-neuronal antibodies.  The most supportive evidence is the remission/resolution with treatment.

PANDAS describes the illness caused by the triggering infection called Group A Beta-hemoytic Streptococcus (GABHS).   PANS was adopted as the new designation because it is clear that other  infections, in addition to GABHS, can trigger the characteristic illness –  Mycoplasma pneumoniae, Ebstein Barr Virus (EBV), Herpes Simplex Virus (HSV) and Borellia Burgdorferi (Lyme).  Certain infections cause significant inflammation and may also trigger a flare – Human Herpes 6 (HHV6), Influenza, Parvovirus B19 and intestinal dysbiosis. Other factors may also exacerbate symptoms – Stress, Allergies, Chlorine and dietary factors.

How is PANS treated?

Treatment is targeted to eliminate the exposure to the triggering infection and to “calm down” the immune attack of the brain usually with the use of antibiotics, herbs, non-steroidal anti-inflammatory drugs (NSAID) and targeted nutrient therapy. Screening for household carriers is needed for refractory symptoms.  Medication to help with symptoms and cognitive behavioral therapy for OCD may also be needed.   Proper treatment for each individual is determined by response to treatment.

At Sancta Familia Center for Integrative Medicine, LLC we take an integrative approach to diagnosis and management because PANS/PANDAS may not be the only issue affecting the illness and behavior. A comprehensive medical evaluation and laboratory assessment are focused on finding the triggering infection(s), including GABHS, Mycoplasma, EBV, other viruses, and Lyme, if indicated. Stool testing is a key component of this work-up to be sure step species in the colon are addressed; otherwise, remission is more difficult.   Furthermore, healthy bowel function is key for health.   Treatment typically requires antibiotic treatment of the triggering infection(s), Enhansa or other curcumminoids for inflammation, GI support/treatment and Targeted Nutrient Therapy.   Steroids may be used when indicated and when Lyme isn’t present.   We do not currently offer IVIG treatment.  Most importantly, our medical and office staffs are very familiar with PANS/PANDAS and provide comprehensive support to our patients during treatment.

Resources:

PANDAS Network – Pediatric Autoimmune Neuropsychiatric Disorders

PANDAS Physician Network