PANS treatment utilizes three complementary interventions to treat the patient completely.
The PANS/PANDAS Research Consortium (PRC) published PANS PANDAS Treatment Guidelines in a special issue of the Journal of Child and Adolescent Psychopharmacology (JCAP Vol. 27 #7, 2017). These Treatment Guidelines represent ‘‘best practices’’ from across the country. Below is a summary of these guidelines; please read the published guidelines for specifics on treatment plans, medications, dosages, side effects, pertinent studies, and complete citations.
“At A Glance”
80% of PANS patients present with neuroinflammation and/or postinfectious autoimmunity. Consequently, PANS treatment utilizes three complementary interventions to treat the patient completely. Doctors must individualize treatment protocols according to the patient’s severity of symptomology, course of illness, lab testing, and physical exam. Primary care providers can treat most PANS patients with the direction of the Treatment Guidelines. However, clinically complex patients may require a team of PANS clinicians.
“At A Glance”
“At A Glance”
Guidelines for Treating PANS
Three-Pronged Approach Treatment Strategies
Three-pronged treatment protocols are dependent on disease trajectory, symptoms, and severity as well as lab work and patient history.
Provide Symptomatic Relief
As PANS treatment is a three-pronged strategy; treat PANS symptomatically while treating inflammation, immune system, and infections. Prioritize the behavioral, and psychiatric treatments based on which symptoms are the most immediately concerning, and creating the most interference. Treatments must be individualized and will require adjustment; symptomology and severity differ per child. Psychiatric medications, generally, should be implemented with a ‘‘start low & go slow’’ approach; beginning dosages for PANS are typically ¼ or less typical doses. Patients with mild to moderate symptoms may not require any pharmacological intervention while those with more severe symptoms may require behavioral therapy, further education, and pharmacologic treatments. Treatments should be reviewed periodically and adjusted as per symptom severity; symptoms can change during a flare and from flare to flare. The disease trajectory and the efficacy of other treatments such as antibiotics, anti-inflammatories, and immunomodulators vary from patient to patient. Some patients react positively and quickly to medical interventions, while others experience less positive outcomes. Thus, mental health providers are advised to not always make quick changes with every symptom change.
General Guidelines of Immunomodulatory Therapy
1. New Onset/Acute Flare
- Mild: ‘‘tincture of time’’ along with CBT. If symptoms persist, add nonsteroidal anti-inflammatory drugs and/or short oral corticosteroid bursts
- Moderate-to-Severe: oral or intravenous corticosteroids may be sufficient.
- Extremely Severe: Long, tapered corticosteroid courses or repeated high-dose corticosteroids. TPE is the first-line therapy given with or without IVIG, high-dose intravenous corticosteroids, and/or rituximab.
- As above
- Look for recurrent or new triggers; treat accordingly
- If immunodeficient, IVIG may be warranted.
3. Chronic-Static or Chronic-Progressive
- Mild-to-moderate and moderate-to-severe symptoms: Prescribe immunomodulatory therapies appropriate to severity
- Severe-to-extreme symptoms: Consider appropriate immunomodulatory therapies. Seek further evaluation.
- Refractory disease course: Seek further evaluation. Consider appropriate immunomodulatory therapies. Consider shifting to primary rehabilitation in cases with possible injured neurocircuitry.
Treat Postinfectious Autoimmunity and/or Neuroinflammation
Immune treatments are only used in PANS patients demonstrating signs of postinfectious autoimmunity and/or neuroinflammation, which are seen in at least 80% of patients. Evidence to prescribe these treatments may be obtained from paraclinical assessments, lab work, and physical examination. Immunomodulatory treatment plans are based on disease trajectory and symptom severity; treatment plans must be individualized. The Treatment Guidelines are organized by severity: mild, moderate-to-severe, and extreme/life-threatening clinical presentations. For more information on Symptom Severity, please see (See website section on Symptom Severity.) There are supplementary guidelines based on disease trajectory because single disease and relapsing-remitting disease episodes are treated differently than those with a chronic-progressive and chronic-static course.
Treat Source of Infection
Current data shows that an infection is typically the inciting factor for PANS. As part of the three-pronged treatment approach for PANS, treat the underlying infections thoroughly for all PANS flares triggered by an infection. As indicated by emerging data, the PRC suggests a course of anti-streptococcal antibiotics at the time of diagnosis even without a documented GAS infection. Some patients have reported full recovery due to antibiotic treatment. All PANS patients should be closely examined for intercurrent infections. If positive for an infection, then treat according to standard guidelines.
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