PANS Clinic

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 check for other things to be thorough.

2. Rule out acute rheumatic fever. Examine for a murmur. If the child has a history of joint complaints, involuntary muscle movements/swallow/headaches, rashes, also refer to a pediatric cardiologist to exclude valve damage rheumatic carditis.

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

4. Check for other infections. Optional: Blood test - mycoplasma IgM for active infection. If urinary symptoms are present, obtain a urinalysis. In PANS, this is likely to be negative and suggest that the urinary urgency, frequency or secondary enuresis are manifestations of PANS, rather than a urinary tract infection.

5. Consider necessary referrals: 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 a dramatic change. Treatments may include:

• Prescribe 14 days of antibiotics (Penicillin/amoxicillin,¹ azithromycin, cefdinir, Augmentin, or others). Consider an initial 3-4 week course or long-term coverage depending on the case.

• Consider a 5-7 day course (up to 6 weeks depending on severity) of NSAIDs (ibuprofen) and/or prescribe a 5-7 (up to 30) day steroid burst³ or 6 weeks of a NSAID at immunomodulatory dose.

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

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

• IVIG is sometimes used for more advanced cases, but this is something I am not able to administer yet.

 

What to expect with treatment:

1. Unlike traditional OCD, some studies have shown improvement 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 some other non-microbial effects.

2. PANS OCD has a relapsing remitting course. Most children will experience at least one recurrence of symptom onset due to a PANS trigger. Parents need to understand there is no “quick fix”. Traditional OCD is characterized by a waxing and waning course with modest changes in severity. However, with PANS OCD, the course is relapsing-remitting, with dramatic, abrupt exacerbations of OCD and other PANS symptoms.

3. Residual OCD may persist despite any 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.”

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Cost and Payment:

I am committed to keeping care as affordable and accessible as possible, and therefore use a "Direct Care" model which means that I believe in you having unbroken access to your doctor. This is critical for staying on top of your child's help and eliminating the barriers and red tape which is so frustrating. 

• Email, text, easy access to appointments and refills (no long waits), and flexibility without having to pay per interaction. 

• ​No insurance necessary

• The cost is $250/month, transparent