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What To Do After a PANDAS Diagnosis

What to do after a PANDAS diagnosis

Managing a PANDAS/PANS diagnosis can be challenging. Learn more about the steps you need to take after your child receives a diagnosis.

If someone in your family is affected by PANDAS or PANS, you likely faced a long journey searching for answers about your child’s symptoms. You’ve also likely spent lots of time researching the behavioral and neurological symptoms associated with PANDAS/PANS and advocating for your child’s diagnosis with their healthcare provider. Since there is no definitive test for these diseases, getting a diagnosis of PANDAS/PANS is based on criteria of signs, symptoms and lab results that are not explained by other medical disorders.

Of course, we understand that managing a new diagnosis can be challenging. However, a PANDAS/PANS diagnosis isn’t the last step on your journey. Many resources are available to help support your child and family after a PANDAS/PANS diagnosis. Keep reading to learn more.

Should you get a second opinion to diagnose PANDAS?

Doctors, specialists and other healthcare providers are necessary for diagnosing, treating and managing patients with PANDAS/PANS. Working with a doctor or specialist to treat your child’s PANDAS/PANS is the first step to properly managing the condition. Due to the limited research on the disease, parents often struggle to get their child a PANDAS/PAN diagnosis. Rather than seeing a broad range of doctors and specialists, it is beneficial to work with a professional who has experience caring for PANDAS/PANS patients.

Having a healthcare provider that’s familiar with PANDAS/PANS is helpful for families navigating these conditions. Our directory of professionals is available to guide you to the proper clinical support in your community. With help from an experienced healthcare professional, patients and their families can explore the current best practices for PANDAS/PANS treatment.

Should you start treatment right away after a PANDAS diagnosis?

Treatment and management of PANDAS/PANS are often complex. Working with an experienced healthcare professional right after your child receives a diagnosis with this condition can improve patient care and ensure the best possible outcome. When treated early, PANDAS/PANS can remit entirely. However, untreated PANDAS/PANS can lead to persistent symptoms—so getting appropriate treatment right away for your child is a crucial next step on your journey following a PANDAS diagnosis.

What treatment options are available after being diagnosed with PANDAS?

The latest clinical research provides several options and recommendations for treating PANDAS/PANS in children. Treatment options are primarily for relieving some of the symptoms associated with these diseases. So you can discuss PANDAS/PANS treatment options with your doctor recommended by a consortium of health professionals, clinicians and researchers, including:

  • Antibiotics (e.g., penicillin, augmentin, cephalosporins, azithromycin) can treat a current strep infection.
  • Prophylactic antibiotics prevent reinfections while also calming the autoimmune processes affecting the brain. Guidelines from the American Academy of Pediatrics recommend that children with PANDAS/PANS remain on prophylactic antibiotics until five years after the last attack, or until age 21 (whichever is longer). When treating PANDAS/PANS, it is crucial to get rid of strep or other bacterial infections completely.
  • Intravenous immunoglobulin (IVIG) infusions help treat immune deficiencies. About 20% of children with PANDAS/PANS are immune deficient, according to initial research conducted by the PANS Consortium. PANDAS is an autoimmune irregularity that causes inflammation of the brain. Studies show that IVIG is a helpful treatment option for patients experiencing harmful inflammation caused by autoimmune processes. However, the exact mechanisms of this treatment method remain unclear. IVIG could be a beneficial treatment method for PANDAS/PANS patients. Researchers are conducting studies on the benefits of IVIG for encephalitis and other medical conditions.
  • Plasmapheresis is a medical procedure where harmful autoantibodies are removed from the blood. Doctors use this treatment method when a patient presents with severe, possibly life-threatening symptoms.

Talk to your healthcare provider about medical interventions and other PANDAS/PANS treatment options available for your child.

Should your child’s school be aware of a PANDAS diagnosis?

PANDAS/PANS are misunderstood disorders that can disrupt your child’s everyday life. Symptoms of PANDAS/PANS may affect your child’s performance at school. In time, this may impact your child’s ability to excel in this environment. Fatigue, behavioral issues and other physical symptoms can result in missed attendance, sensory overload and social issues with peers.

Teachers may be unaware that your child’s behavior or medical symptoms are related to PANDAS or PANS. By informing your child’s school about their diagnosis, you can help ensure that your child receives the appropriate support. 

Schools that are aware of your child’s diagnosis can provide accommodations to support your child’s condition effectively. Workload modifications, developing safe responses to inappropriate behaviors and cognitive-behavioral techniques are a few ways school staff members may manage a student with PANDAS/PANS.

As a parent, you can increase awareness of PANDAS/PANS to support the management of your child’s condition at school. For example, our resources for educators include downloadable guides and handouts to provide a foundational understanding of PANDAS/PANS for people working in school settings. Share these resources with teachers, principals and counselors, and work with school staff to develop strategies for managing your child’s PANDAS/PANS at school. By increasing awareness and understanding of this condition at school, you are helping your child adjust to living with these commonly misunderstood disorders.

What can happen if you leave PANDAS untreated?

Parents should work with an experienced healthcare provider to manage and treat symptoms after a PANDAS/PANS diagnosis. Left untreated, PANDAS/PANS may cause persistent debilitation and inflammation of the brain.

Clinical research shows that children with PANDAS/PANS experience improved symptoms and can resume school activities with the appropriate treatment. After diagnosis, it’s important to work with an experienced professional right away to find the best treatment options. You’ll also want to reduce any long-term impacts of your child’s disorder.

What support is available for families impacted by PANDAS?

The journey to a PANDAS/PANS diagnosis can be stressful and filled with uncertainties. As a parent, you should have access to the most helpful information and resources to manage your child’s condition at home, at school and in your community.

PANDAS Network offers helpful resources for parents to help you navigate this journey. We strive to provide parents with knowledge and guidance to feel empowered in their child’s health decision-making. These resources include downloadable guides, research articles and sample letters to share with your child’s teachers, administrators and staff at school. Similarly, spreading awareness about PANDAS/PANS in your child’s community creates a strong support network for families living with this condition. In addition, explore additional resources for PANDAS/PANS to learn more about organizations and websites working to increase our understanding of these conditions.

Most importantly, know that you are never alone on this journey. If you’re looking for support from other families walking a similar path, consider joining a PANDAS/PANS support group in your area. Online, you can read stories of brave individuals who shared their experiences with these diseases.

With your child’s diagnosis, you are a member of our community (and we’re so glad you’re here). If you’re looking to get involved in advocacy, here are some options to support new research, boost public awareness of PANDAS/PANS and more. Not only will this go towards improving the situation for your child and family, but it will also help pave the way for others who will come after you.