The following information is based on the 2017 consensus by experts on PANS/PANDAS. It also includes my professional insights and commentary. The goal of this summary is to provide an overview of conventional medical recommendations alongside holistic approaches to care. Every child’s journey is unique, and treatment must be individualized to their evolving needs.
What is PANDAS?
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection. It involves the sudden onset of obsessive-compulsive disorder (OCD) and/or tics in children following a Group A Streptococcal infection.
Note: Not every child will display classic signs of a strep infection.
Symptoms may include:
- Motor or vocal tics
- Intrusive thoughts or compulsive behaviors
- Emotional and behavioral changes
The underlying hypothesis suggests that PANDAS results from brain-reactive autoantibodies triggered by the strep infection. PANDAS is considered part of the broader PANS spectrum.
What is PANS?
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. It is characterized by a sudden onset of OCD or severe food restriction (anorexia), plus at least two of the following symptoms:
- Anxiety
- Depression or emotional lability
- Irritability or aggression
- ADHD symptoms or decline in school performance
- Sensory/motor abnormalities (e.g., sleep issues, enuresis, frequent urination)
- Cognitive deficits
- Sleep disturbances
Triggers are usually infectious or inflammatory.
Diagnosis is crucial, but treatment should begin without delay.
Diagnostic Approach
Comprehensive testing should include screening for:
- Infectious triggers: Strep (throat culture, ASO titers), Mycoplasma, EBV, CMV, Lyme, etc.
- Viral and bacterial infections: HHV-6, HSV-1/2, Measles, Mumps, Rubella, Varicella
- Environmental toxins: Heavy metals (lead, mercury, aluminum), mold, and mycotoxins
- Allergies: Food, chemical, and environmental allergens
- Genetic or structural considerations: Brain injury, MS, concussion, etc.
Conventional Treatment Approaches
- Psychological: CBT, ERP, Parent Management Training
- Behavioral Therapies
- Pharmacological: SSRIs, antipsychotics, antibiotics, anti-inflammatory medications
Holistic & Integrative Interventions
- Anti-inflammatory & immune support: Low-Dose Naltrexone (LDN), Ozone Therapy
- Nutritional changes: GFCF, organic/non-GMO diets, sugar/corn/soy-free
- Detoxification: Heavy metals, lymphatic and liver support, ionic foot baths
- Supplements: B12 shots, Vitamin D, CoQ10, Omega-3s, adaptogens
- Supportive therapies: CBD (oral/injectable), homeopathics, addressing MTHFR mutations, hormone balancing (e.g., thyroid, cortisol)
These interventions must be adapted to the child’s evolving presentation. Some require minimal support; others may need intensive and multidisciplinary care.
Medical Interventions That May Have Dramatic Impact
- Antibiotics
- Immunomodulatory treatments: IVIG, oral/IV steroids
- Plasmapheresis for severe or life-threatening symptoms
However, responses are highly individualized. New symptoms can emerge even after initial improvement.
Crisis and Safety Management
Severe psychiatric symptoms like suicidality, aggression, or impulsivity require immediate intervention.
- Full psychiatric assessment is critical
- Hospitalization may be necessary in extreme cases
- Parents should insist on being allowed to remain with the child in hospital if admitted
Educational Support (504 Plan/IEP)
For children with OCD, ADHD, tics, or other learning challenges:
Accommodations may include:
- Excused absences, reduced workload
- Extra time for tests
- Audio books, dictation tools
- Bathroom access without asking
- Shorter school days, reduced physical activity load
- In-class aides or note takers
Accommodations should reflect the child’s worst days, and re-evaluated once symptoms improve.
Family Support & Education
Caring for a child with PANS/PANDAS can be exhausting and unpredictable. Support strategies include:
- Minimize transitions and over-stimulation
- Prioritize rest and nutrition
- Join online or local support groups
- Prepare for episodic behavioral storms (e.g., rage, anxiety), followed by periods of remorse and calm
Managing Specific Symptoms
OCD
- CBT/ERP is first-line
- SSRIs: Prozac, Zoloft, Fluvoxamine, Anafranil (start low, go slow)
- Severe cases: short-term antipsychotics (e.g., risperidone, aripiprazole)
- PMT helps reduce parental reinforcement of compulsions
Food Restriction
- Rule out other causes (e.g., eosinophilic esophagitis)
- Nutritional support, hydration
- CBT, ERP, and OT
- GFCF diet and B12 have shown to improve appetite
Tics
- 70% of patients experience them
- CBT, guanfacine, clonidine
- Short-term antipsychotics for severe cases
- Holistic support: see general interventions
Irritability/Aggression
- Benzodiazepines (e.g., lorazepam)
- Benadryl or antipsychotics for acute rage episodes
- CBD (topical or oral), holistic calming approaches
Anxiety
- CBT, temporary benzodiazepines
- Gabapentin, clonidine, SSRIs
- Accommodate during acute phases; restore normal routines once stabilized
ADHD
- School accommodations essential
- Clonidine and guanfacine may help more than stimulants in this population
- Holistic: diet, detox, B12, LDI/LDA, sleep support
Sleep Disturbances
- Address underlying OCD, anxiety, sensory sensitivities
- Establish good sleep hygiene
- Melatonin, benadryl, clonidine, trazodone, or Ambien if needed
- Holistic support: calming routines, homeopathics, LDI/LDA
Depression
- Mild: counseling and support
- Severe: SSRIs or bupropion, with monitoring for side effects
- Use caution in cases of family history of bipolar disorder
Psychosis
- Seen in ~25% of cases
- Antipsychotics for short-term symptom management
Pain
- Can indicate early inflammatory issues
- May require Rheumatology referral
- PT/OT, anti-inflammatories, holistic pain management
Immunomodulatory Therapies (Part II)
- Mild cases: supportive care, CBT, holistic therapy
- Moderate-severe: oral/IV steroids, IVIG
- Severe cases: plasmapheresis, high-dose steroids, IVIG, rituximab
Preventing Infections (Part III)
- Conventional: vaccinations, hygiene, immune support
- Holistic: optimize Vitamin D, reduce inflammatory burden, use ozone therapy
References:
- Clinical Management of PANS – Psychiatric Interventions (Thienemann, 2017)
- Immunomodulatory Therapies for PANS (Frankovich, 2017)
- Infection Management in PANS (Cooperstock, 2017)