Management of Relapsing PANS/PANDAS with Anti-Inflammatory Response
For a 7-year-old with PANS/PANDAS whose tics and OCD symptoms improve with anti-inflammatory therapy but relapse when stopped or during URIs, continue maintenance anti-inflammatory treatment (NSAIDs or corticosteroids) combined with antibiotic prophylaxis to prevent infection-triggered exacerbations, while simultaneously treating psychiatric symptoms with evidence-based behavioral and psychopharmacologic interventions.
Treatment Framework
Immediate Management During Acute Exacerbations
Treat any active streptococcal or other bacterial infection aggressively with appropriate antibiotics (penicillin V 500mg four times daily for 10 days, or amoxicillin 50 mg/kg once daily [maximum 1000 mg] for 10 days) 1, 2.
Resume or intensify anti-inflammatory therapy during URI-triggered flares, as the pattern of symptom improvement with anti-inflammatories followed by relapse suggests ongoing inflammatory pathophysiology 3.
For penicillin-allergic patients, use erythromycin, clindamycin (300 mg four times daily for 10 days), or azithromycin (maximum 500 mg once daily for 3-5 days) 1, 2.
Long-Term Maintenance Strategy
Antibiotic Prophylaxis:
Implement long-term antibiotic prophylaxis to prevent streptococcal-triggered exacerbations, as this approach has shown continued symptom improvement in 2-5 year follow-up studies, particularly when effective in preventing recurrent infections 4.
This recommendation differs from the American Heart Association's position against routine prophylaxis, but is supported by prospective studies showing that children treated with antibiotics at sentinel episodes had prompt symptom resolution, and recurrences were consistently associated with new GAS infections 5, 4.
Anti-Inflammatory Maintenance:
Continue maintenance anti-inflammatory therapy (NSAIDs or low-dose corticosteroids) given the clear pattern of symptom response and relapse 6, 3.
Taper glucocorticoids to the lowest effective dose to minimize toxicity, which is particularly significant in pediatric populations 7.
Monitor for glucocorticoid-related side effects and consider steroid-sparing strategies if prolonged use is needed 7.
Psychiatric Symptom Management
Behavioral Interventions:
Implement evidence-based cognitive behavioral therapy (CBT) tailored to the child's OCD and tic symptoms during both acute and chronic illness stages 3.
Psychological and behavioral interventions should occur simultaneously with treatment of underlying infectious and inflammatory processes 3.
Psychopharmacologic Treatment:
Start psychotropic medications at markedly reduced initial doses compared to typical pediatric dosing, as PANS/PANDAS patients show individual differences in expected response 3.
Use standard evidence-based psychopharmacologic interventions appropriate for OCD and tic disorders, but anticipate atypical responses 3.
Only prescribe after diagnosis of a DSM-5 psychiatric disorder as part of a comprehensive treatment plan 2.
Monitoring and Follow-Up
Obtain throat cultures during any symptom recurrence to document new streptococcal infections, distinguishing true reinfection from carrier state 2, 5.
Post-treatment throat cultures are indicated only in patients who remain symptomatic or experience symptom recurrence 2.
Document anti-streptolysin O (ASO) and anti-DNase B titers during flares, with ASO peaking 3-6 weeks and anti-DNase B peaking 6-8 weeks post-infection 8.
Important Caveats
Evidence Limitations:
The American Heart Association explicitly states that PANDAS "should be considered only as a yet-unproven hypothesis" and recommends against routine immunoregulatory therapy (IVIG, plasma exchange) as first-line treatment 8, 1, 2.
However, rigorously conducted research on PANS/PANDAS treatments remains scarce with high risk of bias 6.
The episodic nature with clear anti-inflammatory response in this specific case provides stronger justification for continued immunomodulatory treatment than in typical presentations 4.
Immunomodulatory Therapy Consideration:
If symptoms remain severe despite the above measures, consider IVIG or plasma exchange for refractory cases, as long-term follow-up (2-5 years) revealed continued symptom improvement for the majority of patients receiving these treatments 4.
This should be reserved for severe, treatment-refractory cases given the controversial evidence base and lack of strong guideline support 8, 1, 9.