A conservative estimate is that 1 in 200 children in the U.S. alone experience PANDAS/PANS. However, the true lifetime prevalence of PANDAS/PANS is not known because the disease is still misunderstood and underdiagnosed.

• PANDAS/PANS patients may display the following:
  • Sudden onset of OCD symptoms
  • 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
  • Urinary symptoms (enuresis) and bedwetting (frequent or occasional)

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

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.

International OCD Foundation

The mission of the International OCD Foundation is to help everyone affected by obsessive-compulsive disorder (OCD) 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 and/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.

Our day to honor our patients, families and practitioners was originally proclaimed in New York state in 2009 in honor of Stefanos Mitsogiorgakis, who at 12 years old, developed a sudden onset of OCD, tics, loss of math skills and hallucinations amongst other typical PANDAS symptoms following a strep infection. His condition tragically resisted treatment. Consider writing a letter to your local newspaper to raise awareness in anticipation of Awareness Day, or discover other ways you can make a difference on October 9. 

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From financial donations to raising awareness to simply reading up on the latest research, the more people learn about PANDAS/PANS, the more families will receive the help they need when they need it. 

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Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep (PANDAS) and Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) are neuropsychiatric syndromes triggered by a misdirected immune system response.

Patients may experience symptoms after a “strong stimulant” to the immune system, such as strep infection, flu, pneumonia or even the common cold. In patients with PANDAS/PANS, the immune system is thought to mistakenly react and cause an autoimmune reaction that causes inflammation in the part of the brain responsible for motor control, executive functions, behaviors and emotions. This reaction may cause neurological, psychological and cognitive symptoms as a result of neurological inflammation.

PANDAS/PANS can produce sudden, uneven and unusual symptoms in children, typically aged 4 to 10 years. But it can also occur in teens, and new research indicates that it can occur into young adulthood as well. Symptoms may include separation anxiety, obsessions and compulsions, inability to tolerate certain activities, tics, involuntary movements or hyperactivity. Caretakers may also observe changes in handwriting and academic performance, reduced attention span, changes in eating and sleep habits, increased sensory sensitivity and other changes in personality or behavior.

The following treatments can help alleviate PANDAS/PANS symptoms:

• Antibiotics, including penicillin, Augmentin, Cephalosporins and Azithromycin to treat a current infection and prevent recurrent infections.
• IVIG, an intravenous pooled blood product composed of immunoglobulins, that is used to treat immune deficiencies, encephalitis and other medical conditions.
• Plasmapheresis (apheresis) or plasma exchange (PEX), a process during which harmful auto-antibodies are removed from the blood system. 
• Steroids, which likely reduce the inflammation occurring in the child’s brain. 
• Tonsillectomy and adenoidectomy, which should both lower the chances of a person contracting strep and, if there is a latent infection in tonsil crypts, this will also be addressed. These are being studied to possibly calm overactive immune cell production. 
• Cognitive behavioral therapy or exposure and response prevention, which may be beneficial for a recovering PANDAS child.

There is limited research on PANDAS/PANS, and the condition is often misdiagnosed. Additionally, PANDAS/PANS may occur with other autoimmune disorders, immune deficiency or other neurological or psychiatric disorders. This can make treatment and management more complex. PANDAS/PANS are sometimes overlooked by clinicians who assume that there is not an underlying medical cause for the patient’s psychiatric symptoms.

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, which is used in treating 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 and/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 (OCD) 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 and/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.

PANDAS/PANS symptoms may cause deficits in performance, particularly in the areas of:

• Attendance (due to lack of sleep, fatigue)
• Cognition (affecting behavior; academics, including reading, writing and math; sensory overload)
• Fine motor skills (handwriting and task completion) 
• Perceptual and physical issues that affect fine/gross motor skills
• Urinary frequency and control
• Ability to eat normally
• Social issues with peers

Depending on the severity, which may change over time, PANDAS/PANS may impact a student’s ability to:

• Attend and travel to school-related activities
• Sustain focused attention and executive functioning
• Adapt to transitions and stresses
• Understand and remember information
• Communicate effectively, both orally and in writing
• Behave in age-appropriate ways and demonstrate self-care and daily living skills
• Maintain their previous level of physical and mental stamina

• School nurses working with PANDAS/PANS students can implement the following steps: 
  • Start with collaboration and recognize the need for the educators, providers, family and when possible, the student, to provide feedback and work together. 
  • Consider interventions that will address symptoms affecting attendance and participation during the school day, including lack of sleep, fatigue/poor stamina, inability to eat normally, urinary frequency, movement issues, tics, fine motor deterioration, separation anxiety, OCD symptoms, poor cognitive stamina and sensory overload. 
  • Consider schedule changes, alternative activities and placements, transportation logistics and attendance flexibility. 
  • Consider occupational therapy, physical therapy and social skills support.

It’s important to develop safe and effective responses to inappropriate behaviors by reducing stimulation and demands on students, redirecting student’s attention and implementing cognitive behavioral techniques and other therapeutic measures. 

It’s also important to consider how your school applies federal safeguards regarding inappropriate disciplinary actions or techniques by staff. Consider aspects of an emergency plan to address behavioral situations at school that includes behavioral interventions and immediate support (by a parent, staff member, therapist, emergency medical support) and use of specific language and phrases. 

In terms of academics, testing, workload accommodations and modifications will likely include provisions for extra time, distraction-free settings, assistive technology, alternate methods of access and completion, prioritization of task completion designed to reflect competence, use of notetakers, reduced academic or homework load, rest periods with a nurse, adapted physical education and home/hospital instruction.