What Really Works for PANS or PANDAS?
In this survey of 698 families, caregivers most often rated long courses of broad-spectrum antibiotics, regular IVIG for children with low antibody levels, and anti-inflammatories like ibuprofen as helpful. SSRIs were often poorly tolerated. These are caregiver ratings, not results from a controlled trial, so they show what families experienced rather than what has been proven.
Dr. Kumar’s Take:
This large community-based survey gives 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). In this survey, caregivers rated treatments aimed at infection and inflammation as helpful more often than psychiatric drugs. Long courses of broad-spectrum antibiotics, IVIG in immune-deficient patients, and common NSAIDs like ibuprofen were often rated effective. These are caregiver reports from a self-selected group, so they point to what families found helpful, not what has been proven. 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:
✔ Caregivers often rated long courses of antibiotics as very effective, more often for children with healthy immunity than for immune-deficient ones. For immune-deficient children, broad-spectrum antibiotics appeared particularly useful.
✔ IVIG was most effective when given regularly to kids with IgG deficiency at 0.8 to 1.1 g/kg
✔ Anti-inflammatories like ibuprofen helped most kids, especially in high doses
✔ SSRIs were often not well tolerated, and some families reported worsening of symptoms
✔ CBT with ERP was at least somewhat effective for about two-thirds of those who tried it; a few families said it only helped 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) worked better than short ones for most antibiotics; amoxicillin-clavulanate was rated “very effective” by 52%
- 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 to 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 medicines used for more than 30 days were at least somewhat effective for most (78%), similar to ibuprofen, and naproxen was described as more effective than ibuprofen
Psychotropic meds:
- SSRIs were often poorly tolerated
- Only 17% found them very effective; 25% stopped them because of side effects, and a few families described worsening such as aggression or mania
- ADHD meds, antipsychotics, and mood stabilizers showed mixed results
Psychotherapy:
- CBT with ERP had the highest reported benefit
- A few families said therapy only helped once medical symptoms were treated
Complementary/Alternative Therapies:
- More than half of families (352) found some alternative therapy helpful
- Most often reported helpful: probiotics, vitamin D, omega-3s, B vitamins or inositol
- 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?
Long courses (more than 30 days) of broad-spectrum antibiotics did best. Amoxicillin-clavulanate had the highest rating: 52% of those on a long course called it very effective.
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?
The survey did not track whether treatments were used alone or together, so it cannot answer this. Anti-inflammatories like ibuprofen were at least somewhat effective for most patients who used them.
Should we start CBT right away?
CBT with ERP was at least somewhat effective for about two-thirds of those who tried it. A few families said it only worked once medical treatment had brought symptoms under enough control for the child to take part.
Conclusion
Treating PANS or PANDAS requires more than just SSRIs or counseling. In this survey, families most often reported benefit from sustained treatment of infection and inflammation. The survey could not show which order of treatments works best. 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.
