I recently had a neighbor in the medical field ask if PANDAS was real. It is understandable why this syndrome is confusing… and why it might be distressing for parents. There is uncertainty about the cause and there is variability in the presentation of symptoms. The idea that a child could suddenly develop significant obsessions and compulsions or a serious tic disorder after having strep throat is definitely concerning. The prevalence is not known. The connection to strep is unclear. Best practice in treatment requires both medical and psychological interventions. The diagnosis is not based on a definitive blood or “lab test”, but on the clinical presentation of symptoms. A diagnosis requires a physical exam and assessment of a child’s medical and psychiatric history to understand how and when symptoms started and what else might be going on to contribute to these behaviors or concerns.
What is it? PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is a subtype of PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). PANDAS typically affects children who are 3-12 years of age. There is an acute, or sudden, onset of distressing symptoms and a significant change in a child’s behaviors during or after an episode of strep or scarlet fever (but this might be weeks after). Children suddenly exhibit new or significantly increased obsessive and compulsive behaviors or tics. They also usually have other serious behavioral symptoms. Separation anxiety, restricted eating, aggression, intense mood changes, depression, sleep disturbances, frequent urination, ADHD symptoms (hyperactivity and impulsive behavior) and academic decline are common additional problems that might also co-occur.
OCD typically has a gradual progression, but with PANDAS the behaviors appear suddenly. If symptoms are present before strep, they are significantly and dramatically worse after. The PANDAS Network estimates that one in 200 children may have PANDAS/PANS, but the exact number is not known. It is important to consider that strep is common during childhood (some estimates are that children in elementary school have a strep infection 2-3 times a year), but the actual incidence of PANDAS is rare. Of children who are diagnosed with OCD, it is thought that up to 10% have PANDAS. Accurate diagnosis requires a comprehensive evaluation with an experienced physician. Again, other diseases need to be ruled out after a physical exam, medical tests, and psychiatric history.
What is the Treatment? In July 2017, the PANS Research Consortium published comprehensive treatment guidelines (https://www.liebertpub.com/doi/10.1089/cap.2017.0042).
A child will need medical, psychological, and school based support. If PANDAS is suspected a throat culture is taken and antibiotics are administered. Often this results in a noticeable decrease in OCD symptoms. Treatment recommendations also involve participation in research-supported therapy to help address the immediate distress from obsessions and compulsions, anxiety, or mood changes. Cognitive Behavioral Therapy, including Exposure and Response Prevention (ERP) and parent support are recommended best practice. School support is often needed for both behavioral and academic challenges (such as the frequently observed decline in motor skills / handwriting).
For more information about PANS/PANDAS see the websites and fact sheets in the links below. If your child has OCD or a tic disorder and had a sudden onset of significant and distressing symptoms please talk with your physician or use the links below to find an expert in the field. If you need help navigating this process or want therapeutic support please contact our office.
REFERENCES & RESOURCES:
PANDAS Frequently Asked Questions
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