What is PANS/PANDAS?
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS) and Pediatric Acute-Onset Neuropsychiatric syndromes (PANS) are estimated to impact 1 in 200 children. It presents with an acute and dramatic onset of symptoms following an infection. The hallmark infection is strep, causing PANDAS. However, often children whose initial onset was due to a strep infection end up becoming susceptible and flaring from other infections leading to PANS.
Infections leading to PANS/PANDAS:
- Strep
- Mycoplasma
- Viruses
- Lyme Disease
- Bartonella
- Babesia
- Candida
Environmental factors contributing to PANS:
- Mold
- Immunizations
- Anesthesia
- Pesticides
Additional Triggers:
- Metabolic abnormalities
- Endocrine abnormalities
- Thyroid issues
- Stress
- Dental work
- Food allergies/sensitivities
DIAGNOSTIC CRITERIA
A diagnosis of PANS/PANDAS is based on the diagnostic criteria of the following:
ACUTE ONSET of DRAMATIC OCD (or anorexia and/or severe, restrictive eating disorder) in addition to TWO of the following neuropsychiatric symptoms (with severe and acute onset):
- Separation Anxiety
- Emotional lability
- Behavioral/developmental regression
- Sensory/motor abnormalities – handwriting deterioration
- Deterioration of school performance
- Urinary symptoms (urgency, frequency, enuresis)
-
Sleep disturbance (difficulty falling asleep, REM disinhibition/restless sleep)
There are additional clinical observations:
- Hallucinations
- Fight or flight appearance
- Urinary frequency, urgency, accidents
- Handwriting deterioration
- Tics
- Sensory sensitivities
- Aggression
- Learning challenges, especially in math
I cannot stress enough the importance of recognizing that PANS/PANDAS is a clinical diagnosis, relying on a thorough history and physical examination. During the patient's history, clinicians should seek recent illnesses preceding symptom onset or exposure to illnesses from family members or friends around that time. There is no single test that definitively confirms or rules out PANS/PANDAS. However, testing can aid in identifying underlying infections to guide treatment.
It is a serious misconception to believe that the absence of strep antibodies in a child's blood negates the possibility of PANDAS. It typically takes 6-8 weeks for antibody titers to rise after infection. Nevertheless, the presence of antibodies alone does not signify the presence of PANDAS; it merely indicates a prior strep infection. This underscores the importance of consulting with a specialist who comprehends that PANS/PANDAS is diagnosed clinically, and laboratory assessments assist in identifying additional infections to address, as well as nutritional deficiencies, inflammation, and detoxification status.
TREATMENT
The treatment approach for PANS/PANDAS must encompass three key components:
- Addressing Symptoms: This involves employing supportive interventions aimed at alleviating the presenting symptoms.
- Targeting Underlying Infection: Utilizing antimicrobials to eliminate the underlying infection contributing to the condition.
- Managing Immune Disturbances: Implementing immunomodulatory and/or anti-inflammatory interventions to regulate the immune system.
A common oversight I often encounter is the absence of prophylactic antimicrobial treatment in children with PANS/PANDAS. Neglecting this aspect can render them susceptible to more severe flares with each subsequent infection.
I firmly believe that the primary objective of treatment is to mitigate the severity, frequency, and duration of flares. If your child's current treatment plan aligns with this goal and you're observing progress, then it's crucial to acknowledge that you're on the right path. Stay committed and continue with the treatment plan to achieve sustained improvement.