Currently, there is not a 100% definitive test for PANDAS/PANS, so diagnosis is made based on a clinical evaluation of the neurological and mental health symptoms, together with medical history and laboratory findings. If you suspect your patient has PANDAS/PANS, labs including basic blood work, viral/bacterial testing including strep throat cultures and a Cunningham Panel™ can help in making a proper diagnosis.

• Antibiotics, including penicillin, Augmentin, cephalosporins and azithromycin.
• Prophylactic antibiotics to prevent recurrent strep infections.
• IVIG, an intravenous pooled blood product composed of immunoglobulins, used to treat immune deficiencies, encephalitis and other medical conditions.
• Plasmapheresis (apheresis) or plasma exchange (PEX), a process (done in a hospital) during which the harmful auto-antibodies are removed from the blood system.
• Steroids, which likely reduce the inflammation occurring in the child’s brain and have been shown to reduce the severity of symptoms in patients with Sydenham’s chorea. 
• Tonsillectomy, which should lower the chances of a child contracting strep.
• Cognitive behavioral therapy or exposure and response prevention, which may be beneficial for a recovering PANDAS child.

Even though strep is the most cited trigger for PANDAS/PANS, other bacteria, viruses and environmental factors can create the misdirected immune response, including Mycoplasma pneumoniae (also known as walking pneumonia), staph infections, Lyme disease, influenza, coxsackievirus, Epstein-Barr virus and herpes simplex virus. Other possible triggers include exposure to illness, allergies, stress, chlorine, diet and yeast overgrowth.

This is your chance to make a big difference and deeply impact children and families. You can be an important source of hope in what can feel like a desperate situation. It may be difficult to imagine PANDAS/PANS when observing a child for 20 minutes in your office. Ask families to video their child and forward the footage to you. Prepare recommendations for trusted local pediatric immunologists, neurologists, psychologists, psychiatrists and support groups.

Above all else, do not treat parents as unreasonable or overreacting. Most parents need to take time from work or other responsibilities for doctor’s visits and have had to endure screaming and OCD symptoms and sensory symptoms just to get their child to you. Please refer responsibly if your practice cannot accommodate PANDAS/PANS education and treatment.

PANDAS Network recommends the following resources as supplemental references for parents:

PANDAS PHYSICIANS NETWORK

National Institute of Mental Health 

International OCD Foundation

The mission of the International OCD Foundation is to help everyone affected by obsessive-compulsive disorder and related disorders to live full and productive lives. 

RARE Disease Tool Kits

RARE Toolkits provide individuals with usable information on a variety of topics related to living with or advocating for rare disease patients. RARE Toolkits are being created in collaboration with key rare disease stakeholders that have developed a vast array of subject matter expertise and believe in the importance of sharing these best practices.

The Balanced Mind Parent Network

The Balanced Mind Parent Network (BMPN), a program of the Depression and Bipolar Support Alliance (DBSA), guides families raising children with mood disorders to the answers, support and stability they seek.

On Our Sleeves: The Movement to Transform Children’s Mental Health

On Our Sleeves provides free evidence-based resources from the experts at Nationwide Children’s Hospital to educate families and advocates on children’s mental health issues.

My Kid is Not Crazy Documentary

“My Kid is Not Crazy,” a film by Tim Sorel, tracks the journey of six children and their families as they become tangled in the nightmare of a medical system heavily influenced by the pharmaceutical industry.