Children and adolescents with a PANS/PANDAS flare may be extremely disruptive; they may have symptoms of OCD, mood lability and rage attacks, separation anxiety, life-threatening food and liquid restriction, oppositionality, sleep cycle reversal, fatigue, and pain. They may appear willful, but they are quite ill. At a minimum, symptoms must be managed for safety so that the child can comply with and receive treatments. Families must learn behavioral strategies and crisis management and refrain from accommodating OCD.
The most effective psychopharmacological intervention may be treatment of underlying infection and/or inflammation. Responses to temporary symptom exacerbations amidst treatment with other medical interventions should be confined to those intended to control dangerous or therapy-interfering behavior temporarily. Hospitalization may be required for suicidal and other dangerous behaviors and failure to eat or drink sufficiently.9
New PANS/PANDAS psychiatric symptoms are likely caused by inflammation and may not respond to psychopharmacological interventions in the same way that garden-variety psychiatric diseases respond to these medications. Because symptoms change episodically and with concomitant antibiotic and immunological interventions, distinguishing the effects of other medications is difficult. Simultaneous treatments for infection, inflammation, and emotional symptoms can make it difficult to discern responses to pharmacological therapy from the other interventions.
Interdisciplinary collaboration and challenges to care
Coordination of care between multiple medical subspecialists is necessary in the evaluation and treatment of patients with PANS/PANDAS and presents a significant challenge. There are a handful of established multidisciplinary clinics in which primary care providers, immunologists, rheumatologists, infectious disease specialists, child psychiatrists, and psychotherapists work together.
Consultation with otolaryngology, neurology, sleep medicine, and neuroradiology subspecialists is frequently needed. Patients who require infusions or imaging under sedation or on a monitored floor need the involvement of a hospitalist, an intensive care clinician, and an anesthesiologist. Most practitioners who encounter PANS/PANDAS will face challenges in coordinating care with physicians outside their specialty. When practitioners develop an informal referral network and share patients with regularity, those challenges are lessened.
Most children will miss some school and will require accommodations. Designing accommodations for fluctuating symptoms poses difficulties because most educational plans are written to address relatively tonic symptoms. Educating all personnel who interact with the youth about the nature of PANS/PANDAS is necessary, as ADHD, separation anxiety, OCD, fatigue, reduced cognitive processing speed, memory difficulties, loss of math and reading skills, new-onset handwriting difficulty, and frequent urination can all affect learning.
Finally, when more aggressive immunomodulatory therapies are needed, securing insurance approval may be time-consuming and difficult. In addition, since there are few pediatric medical-psychiatric facilities, finding pediatric hospital wards that can accommodate both the medical interventions (eg, imaging, infusions) and the need to keep patients and staff safe from disruptive behaviors can be challenging. Psychiatric wards that accommodate young children and deliver medical interventions are uncommon.
Families carry most of the burden of managing children during a PANS/PANDAS flare. Regional and national PANS/PANDAS support organizations have developed in the US and abroad. Online resources for physicians (PANDASppn.org) and parents (PANDASnetwork.org) have been developed, supported by charitable donations.
PANS and PANDAS are neuropsychiatric disorders in which we can observe childhood illness with relationships between psychiatric symptoms, infection, and inflammation. Early identification and treatment improve the course of illness and its immediate and, likely, long-term impact. Current treatment derives from standard pediatric infectious disease as well as immunological and psychiatric practice, but research about its underlying mechanisms, characteristics, and treatment is growing rapidly. We are optimistic that learning about PANS/PANDAS will help lead to other discoveries in the causal mechanisms of psychiatric disorders.
Dr. Thienemann is Clinical Professor of Psychiatry, Stanford University School of Medicine, and Co-Director of the PANS Program, Stanford Children’s Health, Palo Alto, CA. Dr. Frankovich is Clinical Associate Professor, in the Department of Pediatric Rheumatology, and Co-Director of the PANS Program, Stanford University School of Medicine, Palo Alto, CA.
Dr. Thienemann reports no conflicts of interest concerning the subject matter of this article.
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