Dr. Kumar’s Take:
This large community-based survey gives us one of the clearest pictures yet of what works, and what doesn’t, for treating PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) or PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus). The key insight? Aggressive early treatment of infections and inflammation works better than just psych meds. Long courses of broad-spectrum antibiotics, IVIG in immune-deficient patients, and even common NSAIDs like ibuprofen made a measurable impact. SSRIs and psych meds were hit-or-miss, often poorly tolerated. If your child is struggling with sudden-onset OCD or tics, make sure infections and inflammation are fully addressed. Don’t stop at psychiatric meds alone.
Key Takeaways:
✔ Broad-spectrum antibiotics for more than 30 days worked best, especially in immune-deficient kids
✔ IVIG was most effective when given regularly to kids with IgG deficiency at 0.8–1.1 g/kg
✔ Anti-inflammatories like ibuprofen helped most kids, especially in high doses
✔ SSRIs were often not well tolerated—many saw worsening of symptoms
✔ CBT and ERP were helpful, but only once medical symptoms were under control
Actionable tip:
If your child has PANS or PANDAS, ask your doctor about starting with infection control and inflammation management first. For example, a longer course of azithromycin or Augmentin and high-dose ibuprofen may improve symptoms enough to make CBT more successful later.
Brief Summary:
This 2018 study surveyed 698 caregivers or adult patients with a PANS or PANDAS diagnosis. Researchers looked at a wide range of treatments—medical, psychiatric, and alternative—and asked participants to rate effectiveness. Antibiotics were used in nearly every case, with long courses of broad-spectrum antibiotics providing the most relief. IVIG worked best in patients with IgG deficiencies. Anti-inflammatory treatments like ibuprofen and steroids were widely used and generally well tolerated. Psychotropic medications, especially SSRIs, were often not effective and poorly tolerated. CBT and ERP offered moderate benefit, especially when used after infections and inflammation were under control. Alternative therapies were widely used and perceived as helpful, particularly probiotics and fish oil, but rarely worked alone.
Study Design:
- Survey-based with 698 participants (caregivers or adult patients)
- Data collected via online questionnaire promoted by PANDAS Network and IOCDF
- Survey included 146 questions on treatment type, dosage, duration, effectiveness, and tolerability
- Immune status (e.g., IgG deficiency) was self-reported from lab results
Results:
Antibiotics:
- 97% used antibiotics
- Long courses (>30 days) of amoxicillin-clavulanate and azithromycin were most effective
- Narrow-spectrum antibiotics like penicillin were less effective
- Immune-deficient patients benefited more from broad-spectrum antibiotics
IVIG:
- Used by 28% of participants
- 89% found it at least somewhat effective
- Best sustained benefit was seen in those with IgG deficiency on regular dosing (0.8–1.1 g/kg)
Anti-inflammatories:
- Ibuprofen helped 80% of patients, especially at higher doses
- Steroids (both short and long tapers) showed benefit in over 70%
- Allergy meds and NSAIDs like naproxen had mild benefit
Psychotropic meds:
- SSRIs were often poorly tolerated
- Only 17% found them very effective; 20% discontinued due to side effects like aggression or mania
- ADHD meds, antipsychotics, and mood stabilizers showed mixed results
Psychotherapy:
- CBT with ERP had the highest reported benefit
- Therapy worked better once medical symptoms were treated
Complementary/Alternative Therapies:
- 50%+ used alternative therapies
- Most helpful: probiotics, omega-3s, vitamin D, magnesium
- Diet changes like gluten-free also helped some families
- Alternative therapies alone were not effective for most
How to Treat PANS Effectively
This study supports a multi-layered approach to PANS that prioritizes:
- Early and aggressive infection treatment
- Immune support in kids with deficiencies
- Anti-inflammatory strategies
- Slow, cautious use of psychiatric medications
- Behavioral therapy once the child is medically stable
Related Studies and Research
PANDAS OCD Treatment Overview – Summarizes current treatment strategies for PANDAS-related OCD.
NSAIDs and PANDAS Flare Duration – Investigates whether NSAIDs shorten symptom flare duration.
Azithromycin for PANS-Related OCD – Evaluates the role of azithromycin in treating obsessive-compulsive symptoms.
Podcast: Could Your Child’s Behavior Changes Be Cured with an Antibiotic? – A deep dive into the link between strep infections and dramatic neuropsychiatric symptoms.
Frequently Asked Questions
What is the best antibiotic for PANS or PANDAS?
Broad-spectrum antibiotics like amoxicillin–clavulanate or azithromycin, used for more than 30 days, showed the best results.
Does IVIG help every child with PANS or PANDAS?
Not always. IVIG worked best for children with confirmed IgG deficiencies, especially when given regularly at moderate doses.
Can you treat PANS or PANDAS without antibiotics or IVIG?
Some kids improve with anti-inflammatory therapies alone, but full remission is rare without addressing the infection.
Should we start CBT right away?
CBT and ERP are most helpful after medical symptoms have been treated. Trying too early can overwhelm the child.
Conclusion
Treating PANS or PANDAS requires more than just SSRIs or counseling. This large study shows that early, sustained efforts to eliminate infection and reduce inflammation make the biggest difference. Medical and behavioral therapies are complementary, not interchangeable. Families and providers should work together to build a treatment plan that starts with immune and infection support and transitions into cognitive and behavioral strategies when the child is ready.