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Myths and Misinformation About PANDAS

PANDAS Myths

PANDAS and PANS are commonly misunderstood disorders that are often stigmatized in the medical community. Learn the truths about PANDAS as we debunk top PANDAS/PANS myths in this blog post.

As a parent or caregiver of a child with PANDAS/PANS, you face a long journey looking for explanations, guidance and support for your child’s disorder. Everyone’s journey is different. However, parents agree that the road to diagnose and treat their child’s PANDAS/PANS is challenging. You see your child battle symptoms daily without relief and wonder why these personality changes appeared so suddenly. The journey becomes even more complicated when doctors dismiss your child’s symptoms. You don’t feel listened to or supported. You struggle to find answers, and you may even start to wonder if PANDAS is real.

We know it’s challenging, and we are here to provide you with information and support. Keep reading as we debunk common myths about PANDAS/PANS.

Common Misconceptions of PANDAS

PANDAS isn’t a real condition

“Is PANDAS real?” is a common question. Many people doubt that the condition exists. Doctors dismiss symptoms or prescribe ineffective treatments, and it can seem impossible to get a diagnosis.

But PANDAS/PANS is a real condition that affects children around the world—and their families. Even so, these disorders are commonly misunderstood and stigmatized in the medical community due to lack of awareness. The knowledge gap contributes to one of the top PANDAS/PANS myths that PANDAS isn’t a real condition.

PANDAS/PANS is a relatively new syndrome, identified following the discovery of Sydenham’s chorea. With Sydenham’s chorea, repeated group A strep infections cause profound neurological changes that affect the muscles, leading to irregular muscle movements, termed “chorea,” along with psychological changes. PANDAS/PANS research that spans decades demonstrates that these conditions do exist, and research continues to improve our understanding of these disorders. In the 1990s, scientists identified PANDAS/PANS as separate disorders because it appears there are more substantial mental health changes resulting from group A strep infections. In 2020, the Yale and Columbia University research study provided groundbreaking evidence supporting PANDAS/PANS as a type of autoimmune encephalitis.

There is an abundance of scientific evidence supporting the existence of PANDAS/PANS. Share the latest clinical research with a family member, teacher or healthcare provider the next time someone expresses doubt that PANDAS is real. Raising awareness about these conditions is the first step to demystifying PANDAS/PANS in the medical community.

As a parent, you must advocate for your child and make tough decisions about their health. If your doctor continues to dismiss your child’s symptoms or question the legitimacy of this disorder, it’s time to find a new doctor. PANDAS Network offers a directory of U.S. healthcare providers with experience treating children with PANDAS/PANS. They know the truths about PANDAS and can help you navigate the next step on your family’s journey.

There are no tests for PANDAS

Many people misunderstand the diagnostic process and how to test for PANDAS/PANS, which leads to the common misconception there are no tests for PANDAS. While it’s true that there is no definitive test for PANDAS—it is a clinical diagnosis based on medical history and symptom presentation—there are tests your doctor can use to support the diagnosis. Doctors can use biological markers to assess your child’s condition. An initial diagnostic workup may include basic blood work (e.g., IgE, IgA, IgM and IgG antibodies, antinuclear antibodies, complete blood count, iron, B12 and vitamin D), viral or bacterial testing (e.g., strep throat culture, antistreptolysin O, Lyme disease, coinfections) and additional testing.

The tests are negative, so it must not be PANDAS/PANS

There is no single blood test for PANDAS/PANS. Contrary to common PANDAS/PANS myths, a clinical diagnosis of PANDAS or PANS has a set of symptoms and specific criteria to follow. Since no physical markers are 100% definitive, tests may come up negative, but your doctor can still diagnose your child with PANDAS.

For PANDAS, these criteria include:

  • The presence of significant obsession, compulsions or tics.
  • Abrupt onset of symptoms.
  • Pre-pubertal onset.
  • Association with a strep infection.

For PANS, symptom criteria include:

  • Abrupt, dramatic onset of OCD or severely restricted food intake.
  • Concurrent presence of additional neuropsychiatric symptoms with similarly severe and acute onset.
  • Symptoms are not better explained by another known neurological or medical disorder.

Visit our website for more information about diagnostic criteria for PANDAS and PANS.

PANDAS is the same as other mental health conditions

Another persistent myth about PANDAS is that PANDAS causes autism or is the same as other conditions like OCD. The truth is that PANDAS is an entirely different condition and has research demonstrating that the disorder is autoimmune in nature.

Although signs and symptoms may be similar to conditions like OCD and autism, PANDAS does not respond to only psychiatric medications or mental health treatment. PANDAS/PANS require treatments to address the root cause and prevent further complications. Treatment options unique to PANDAS/PANS include antibiotics, prophylactic antibiotics, IVIG and plasmapheresis. These medical interventions help address current strep infections, prevent repeat infections and treat immune deficiencies in patients. In some cases, mental health treatment options like cognitive behavioral therapy are complementary to these approaches.

PANDAS is not autoimmune

Until recently, the etiology of PANDAS/PANS was not well understood. In 2020, groundbreaking research from Yale and Columbia University indicated that PANDAS/PANS are autoimmune disorders. The study, “​​Antibodies From Children With PANDAS Bind Specifically to Striatal Cholinergic Interneurons and Alter Their Activity,” included a sample of 27 children with PANDAS. Results found elevated IgG autoimmune antibodies in the brains of children with PANDAS. The study provides important evidence that a strep infection can trigger an autoimmune reaction in patients. More research is necessary to understand the exact autoimmune mechanism of PANDAS. But this study provides a foundation for understanding the truths about PANDAS and debunking common PANS myths in the medical field.

PANDAS is not a severe disorder

A huge misconception about PANDAS/PANS is that it is not a severe disorder and therefore shouldn’t be taken seriously. This couldn’t be further from the truth. Symptoms present suddenly and are often so dramatic that they are immediately obvious to family members and others around the child. The severity of symptoms makes it difficult for the child and family to function, with many children needing to stay home from school until /they find the proper treatment and support. Are there mild cases of PANDAS/PANS? By definition we are describing ACUTE (pediatric acute neuropsych syndrome) but it is evident from anecdotal reports from parents that symptoms may have begun in a milder fashion. But, Treatment is not recommended at this time for milder cases NOR are they currently being followed as a medical/scientific cohort. By Definition — PANDAS-PANS are Acute cases only.

Fighting the Stigma Surrounding PANDAS

Now that you know some of the common misconceptions and myths about PANDAS, you can help educate others to spread awareness. Debunking PANS myths and fighting the stigma surrounding this disorder is important to further research, education and treatment. Find out how to get involved and raise awareness in your community by sharing PANDAS resources.

If you are feeling unsupported or misunderstood by your child’s doctor, know that we are here to help. PANDAS Network is dedicated to building public awareness about these devastating disorders with data, resources and information to better inform parents and the medical community. Visit our website to learn more about PANDAS.