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Doctor's Desk

PANS and PANDAS Care Options

Symptoms of PANS/PANDAS:

Sudden Onset of OCD Symptoms: Children with PANS or PANDAS often experience a sudden and severe onset of obsessive-compulsive disorder (OCD) behaviors, which can include repetitive thoughts, fears, or actions.

Severe Anxiety and Mood Changes: Affected individuals may exhibit sudden shifts in mood, including depression, irritability, and intense anxiety, often without previous signs of these conditions.

Physical Symptoms: Tics, involuntary movements, and motor issues may develop, along with joint pain, urinary frequency, and sleep disturbances.

Behavioral Regression: Children may revert to younger behaviors, such as baby talk, bedwetting, or separation anxiety, that were previously outgrown.

Cognitive Changes: There may be sudden declines in academic performance, trouble concentrating, memory issues, or difficulty with reasoning tasks.

Sensory Sensitivities and Hallucinations: Heightened sensitivity to sounds, lights, and textures, or even visual or auditory hallucinations, may develop, particularly in severe cases.


Common Causes of PANS/PANDAS:

Infection-Related Inflammation (Root Cause): PANS/PANDAS is thought to be triggered by an immune response to infections (like strep, in the case of PANDAS) or other illnesses, leading to brain inflammation, particularly in areas that affect behavior and motor functions.

Autoimmune Response: In response to infection, the immune system may mistakenly target brain tissue, particularly in the basal ganglia, leading to neuropsychiatric symptoms.

Environmental and Genetic Factors: Some genetic predispositions and environmental factors, like stress or other infections, may increase the risk of developing PANS/PANDAS or trigger symptom flares.


Interventions to Address the Root Cause:

1. Identifying and Treating Underlying Infections:

  • Antibiotic Treatment: If a bacterial infection is suspected, antibiotics (such as penicillin or azithromycin) are often prescribed to eliminate the infection that may have triggered the symptoms.

  • Antiviral or Antifungal Treatment: For PANS cases not linked to strep, antivirals or antifungal medications may be considered if a viral or fungal infection is suspected.

2. Immune Modulation:

  • Intravenous Immunoglobulin (IVIG): IVIG is sometimes used to modulate the immune system, aiming to reduce inflammation and address autoimmunity. However, it is often denied by insurance due to its high cost and the lack of long-term studies in PANS/PANDAS.

  • Steroids and Anti-Inflammatory Medications: Short-term corticosteroids or nonsteroidal anti-inflammatory drugs (NSAIDs) may help reduce brain inflammation and calm acute flare-ups.

3. Behavioral and Psychological Therapies:

  • Cognitive Behavioral Therapy (CBT) for OCD Symptoms: CBT, especially exposure and response prevention (ERP), can be effective in helping manage OCD-related symptoms.

  • Family Therapy and Support: Counseling for the family can help navigate behavioral changes and maintain a supportive environment.

4. Dietary and Lifestyle Changes:

  • Anti-Inflammatory Diet: Avoiding processed foods, sugars, and potential allergens may help reduce systemic inflammation. Some parents have reported improvements with diets that include omega-3 fatty acids, antioxidants, and probiotics.

  • Stress Reduction and Sleep Optimization: Managing stress and maintaining a regular sleep schedule can be beneficial, as stress can exacerbate symptoms.

5. Plasmapheresis: In severe or treatment-resistant cases, plasmapheresis (a procedure to remove antibodies from the blood) may be considered. This intervention is generally reserved for extreme cases due to its complexity and cost.


Why IVIG Treatments are Commonly Denied by Insurance:

High Cost and Experimental Classification: IVIG treatments can cost between $5,000 and $10,000 per infusion, depending on dosage and location. Because PANS/PANDAS is relatively newly recognized, especially in its full spectrum, many insurers consider IVIG "experimental" or lacking substantial evidence of long-term efficacy, particularly outside of traditional autoimmune conditions like Guillain-Barre syndrome.

Lack of Standardized Diagnostic Criteria: Since there’s no specific test for PANS/PANDAS, diagnoses are often based on clinical presentation and exclusion of other conditions, making it challenging to meet insurers' standards for coverage approval.

Limited Clinical Trials and Research Data: While IVIG has shown effectiveness in reducing symptoms for some children, there are limited large-scale clinical trials to support its routine use in PANS/PANDAS, leading insurance providers to deny coverage on grounds of insufficient evidence.


Steps to Improve Insurance Coverage for IVIG Treatment:

1. Provide Thorough Documentation:

  • Work closely with a physician experienced in PANS/PANDAS to gather a comprehensive record of symptoms, treatments attempted, and any measurable impacts on behavior and health.

  • Document the presence of infections, particularly streptococcal infections in PANDAS cases, as this can strengthen the case for IVIG coverage.

2. Seek a Formal Diagnosis and Supporting Medical Letters:

  • Ensure that all diagnoses are clearly documented. Obtain letters from specialists (like neurologists, immunologists, or pediatricians familiar with PANS/PANDAS) detailing the necessity of IVIG as a treatment.

3. Explore Out-of-Network Benefits:

  • Some insurers may cover IVIG under out-of-network benefits if an in-network provider cannot offer the treatment. It can be beneficial to request coverage as an exception when in-network providers are not accessible.

4. File an Appeal:

  • If coverage is initially denied, you can appeal the decision. Include documentation on the severity of symptoms, previous failed treatments, and any peer-reviewed studies supporting IVIG efficacy in PANS/PANDAS cases.

  • Some families have found success with legal advocacy groups or consulting with a patient advocate to strengthen the appeal process.

5. Consider Medical Coding Adjustments:

  • Ensure that all relevant medical codes (for both the immune and neuropsychiatric aspects of the condition) are correctly submitted. Sometimes, denials are due to incorrect coding rather than coverage policies.

6. Switch Plans:

  • During open enrollment, switch to a plan that covers IVIG for PANS/PANDAS.

7. Advocates that your employer cover this service:

  • If you are on a self-funded employer plan, reach out to your benefits department and appeal to them.


Self-Care and Symptom Management Options:

Behavioral Interventions:

  • Cognitive Behavioral Therapy (CBT) and exposure therapy are helpful in managing OCD symptoms, anxiety, and behavioral issues. Working with a therapist trained in PANS/PANDAS can provide targeted support.

Immune-Supportive Diet and Supplements:

  • Focus on an anti-inflammatory diet with omega-3-rich foods (like fish or flaxseeds), antioxidants (fruits and vegetables), and probiotics to support gut health.

  • Some families find benefits in vitamin D, zinc, and omega-3 supplements, though always consult with a healthcare provider before starting supplements.

Routine and Structure:

  • A consistent daily routine, including a regular sleep schedule, can help reduce stress. Managing sleep is important, as disrupted sleep patterns can worsen symptoms.

Mindfulness and Stress-Reduction Techniques:

  • Incorporating mindfulness, relaxation techniques, or gentle exercise may improve mood and reduce anxiety. Yoga, guided breathing exercises, or progressive muscle relaxation can be especially helpful in managing stress.


Telehealth Options:

Telehealth can be a useful way to access medical advice or mental health support, especially if you lack local access to PANS/PANDAS specialists:

Teladoc Health: Teladoc offers consultations with board-certified pediatricians and specialists who can help manage neuropsychiatric symptoms and discuss treatment options.

Amwell: Amwell connects families with pediatricians and mental health professionals experienced in behavioral health, which can be beneficial for managing OCD and anxiety symptoms.

PlushCare: PlushCare’s virtual visits can provide consultations with specialists who understand PANS/PANDAS and can assist with symptom management or suggest treatment pathways.

MDLIVE: MDLIVE offers access to pediatricians and therapists who can help with ongoing symptom management, especially for OCD and anxiety symptoms.


In-Person Options:

Pediatrician or Specialist Visit:

  • Purpose: Regular check-ins with a primary pediatrician and, if possible, a PANS/PANDAS specialist (such as a neurologist or immunologist) are essential for monitoring symptom progression and coordinating care.

  • Cost: $100 - $300, depending on location and insurance.

IVIG Infusion Therapy (for eligible cases):

  • Purpose: For some children, IVIG can reduce neuroinflammation and alleviate symptoms. Consult with your insurance provider for details, as out-of-pocket costs can vary significantly.

  • Cost: $5,000 - $10,000 per infusion (often requires multiple infusions).

Behavioral and Cognitive Therapy:

  • Purpose: Working with a therapist skilled in OCD and anxiety can help manage neuropsychiatric symptoms, potentially reducing the impact on daily life.

  • Cost: $100 - $250 per session, depending on location and insurance.

Plasmapheresis (for severe cases):

  • Purpose: For treatment-resistant or severe cases, plasmapheresis may be considered to remove problematic antibodies from the blood.

  • Cost: $5,000 - $10,000 per procedure, generally reserved for extreme cases.


Recommended Care Pathway:

  1. Initial Pediatrician Consultation and Diagnostic Testing: Begin with a thorough evaluation and consider testing for recent infections.

  2. Treat Underlying Infections and Immune Support: If an infection is present, treat with antibiotics or antivirals as appropriate.

  3. Consider Immune Modulation and Behavioral Therapies: Work with specialists to determine if anti-inflammatory medications, IVIG, or cognitive behavioral therapy is needed.

  4. Monitor and Document Symptoms: Track symptoms and treatments closely, especially for insurance documentation and potential

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Meet Ethan

Ethan was an energetic, curious 8-year-old who loved building toy block cities and reading about outer space. One autumn, everything changed. Practically overnight, Ethan developed an intense fear of germs, washing his hands repeatedly until his skin was raw. He became anxious, tearful, and started having meltdowns over small things that never bothered him before. His parents, Emily and David, were caught off-guard—Ethan had always been happy and easygoing.


His symptoms didn’t stop there. Ethan began experiencing tics—small, involuntary jerking movements—and his schoolwork, which had once been a source of pride, became a struggle. He started avoiding his friends and refusing to go to school altogether. The changes were so sudden and severe that his parents worried something was seriously wrong.


After visiting several doctors who initially thought Ethan had generalized anxiety or OCD, a pediatric neurologist suggested testing for infections. Tests showed Ethan had recently had a strep infection, even though he hadn’t shown any symptoms. His neurologist then mentioned PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), explaining that his immune system might be mistakenly attacking parts of his brain, specifically the basal ganglia, leading to the abrupt onset of OCD-like symptoms and tics.


Emily and David were relieved to finally have an answer but soon found that treatment was complicated. Their neurologist recommended antibiotics to address any lingering strep bacteria, along with anti-inflammatory medications to help with brain inflammation. They also referred Ethan to a cognitive behavioral therapist to help him cope with his intense fears.


While antibiotics helped reduce his symptoms, they didn’t eliminate them completely. His doctor suggested trying intravenous immunoglobulin (IVIG) therapy, which could help modulate his immune response and potentially reduce his symptoms. But when they contacted their insurance provider, coverage for IVIG was denied. The insurance company considered IVIG "experimental" for PANDAS cases, despite research and support from his medical team.


Desperate to help Ethan, Emily and David appealed the decision, gathering letters from his doctors and documenting every aspect of his journey. In the meantime, they continued with cognitive behavioral therapy, which was helping him gradually face his fears. They also tried dietary adjustments to support his immune health and reduce inflammation.


After months of navigating appeals and working with an advocate, the insurance company finally approved IVIG. Ethan began the treatment and, over time, his symptoms improved. He still has occasional flare-ups, especially when he gets sick, but the worst days are behind him.


Today, Ethan is back to building his toy block cities and laughing with his friends. His family remains vigilant for any signs of relapse, but they are grateful for each day he feels like himself again. Ethan’s journey taught them resilience and the importance of advocating for what he needed, even when the path was far from straightforward.


 
 
 

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