Evaluation and Treatment Overview

Could my child have PANS/PANDAS?

1. Did you notice a sudden start to OCD or Restrictive Eating Disorder?

2. Does your child also experience 2+ of the following: anxiety, sensory amplification or motor abnormalities, behavioral regression, deterioration in school performance, mood disorder, urinary symptoms and/or sleep disturbances

3. Symptoms are not better explained by a known neurologic or medical disorder

How do you evaluate a child for PANS?

1. The history (i.e. the description of the illness and its development) is primary. We also consider other diagnoses to be thorough.

2. Evaluate for Group A streptococcal infection. Throat, skin, anal swaps and exam. Send to lab.

3. Check for other infections. This can be a simple or extensive work-up and usually involves tests of blood, urine, and sometimes imaging.

4. Consider necessary referrals. Theses can include: Psychologist, Cardiology, Rheumatology, Immunology, Neurology, Sleep, Otolaryngology, and/or Infectious Disease

What are the treatment options?

We can decide together whether to do the workup first then treat, or to try treatment empirically (as a trial) to see if there is improvement. Treatments may include:

• Longer courses of antibiotics (Penicillin/amoxicillin, azithromycin, cefdinir, augmentin, or others). Consider an initial 2-4 week course or even longer-term coverage depending on the case.

• Consider a course (1 - 6 weeks depending on severity) of NSAIDs (ibuprofen etc) or a day steroid burst (prednisone) of 1 week.

• Ensure the family has access to CBT/ERP (Cognitive Behavior Therapy/Exposure and Response Prevention) and parental support.

• Consider initial psychiatric treatment with medication and a referral with a psychiatrist to help with symptom management.

• IVIG or plasmapheresis is sometimes used for more advanced cases.

What to expect with treatment:

1. Unlike traditional OCD, some studies have shown notable improvements in neuropsychiatric symptoms in patients with PANDAS after 2–6 weeks of antibiotic treatment. It is unclear if these improvements are from treatment of a latent infection or from other non-microbial effects.

2. PANS OCD may have a relapsing remitting course. Most children will experience symptoms resolution or notable improvement with at least one recurrence down the line due to a PANS trigger. These can be treated again.

3. Some children have their symptoms resolve completely. In others some residual OCD may persist despite treatment of infection, inflammation, CBT, or medications. Cognitive-behavior therapy (specifically exposure with response prevention - ERP) can be helpful as well as anti-obsessional medications, but we “start low and go slow.”