Little known disorder underscores education needs [Commentary]

The mother's story was one that I have heard many times over the past few months, with some variation in detail. Her child, an A and B student with many friends and outside interests, had awoken one morning and refused to go to school. In the following weeks, he developed elaborate rituals that consumed his time, paralyzing fears that made it difficult to function in school or out of it, and intense and frequent rages. His teachers quickly ran out of ideas and strategies, and the student found himself failing five out of six classes.

After months of therapy and numerous specialist visits, the parents finally received the correct diagnosis for their son: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, or PANDAS. His symptoms were attributable to an immune-system reaction triggered by exposure to infection and, happily, resolved upon appropriate treatment. Some figures suggest this reaction, far from being rare, occurs in up to 1 in 200 children, suggesting that most of us will encounter individuals with this condition whether we (or they) realize it.

In Maryland and many other states, Oct. 9th has been designated PANDAS Awareness Day. PANDAS and a related disorder, Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS), are still poorly understood among the general public. In both syndromes, children experience an atypical immune system reaction which can cause obsessions, compulsions, motor and vocal tics, anxiety, mood swings and cognitive and learning challenges. Given the overlap of these symptoms with many other neurological and psychological disorders, children with PANDAS or PANS are at high risk for receiving inappropriate interventions based on inaccurate diagnosis.

Recent neurological research, led by National Institutes of Health (NIH) researchers and other scientists and physicians around the nation, has expanded the boundaries of what is known about these conditions, first identified in the late 1990s. And recently published studies have identified common features of these disorders and promising therapeutic approaches that address underlying infections and immune system dysfunction. As a result, despite the complexity of the diagnosis and treatment processes, families of children with PANDAS and PANS now have a greater likelihood of finding physicians familiar with these conditions and of connecting with support networks of other families who have similar experiences.

This increased awareness, however, has not yet translated into readily-available school and community supports, resulting in significant difficulties for students with PANDAS or PANS, and their families throughout the educational process. Our special education processes, often, rely on the assumption that students will make progress throughout the year. In contrast, students with PANDAS or PANS may demonstrate rapid shifts in their social, emotional or academic functioning as their systems react to, then recover from, illness. Teachers may, understandably, be baffled that the student who was passing math last week is now failing the class and acting out daily. Frequently, students with PANDAS or PANS experience such heightened anxiety that it is difficult to attend school at all, and their immune systems may not be able to tolerate exposure to peers during the height of cold and flu season. Teachers already juggling new curriculum, new tests and new evaluation rules may find it virtually impossible to also learn about new neurological disorders and how to accommodate them in the classroom.

In this era of educational reform, our discussions of students with special education needs often focus on the so-called "big policy questions": How do we make sure these students are prepared for college and career? How well will these students perform on new statewide assessments, and how should we evaluate their teachers? In considering these important questions, it is easy to forget that special education, in the U.S., is built on a foundation of individual civil rights; it is equally important — perhaps more so — to ensure teachers are able to meet the needs of all their students, including those with significant or multifaceted needs. Ensuring this outcome — for students with PANDAS and for all learners — requires that teachers have access to continued professional development, adequate planning time, up-to-date information on brain development and learning, and opportunities to collaborate with colleagues. PANDAS Awareness Day provides an opportunity not only to increase our awareness of a new, and increasingly diagnosed, disorder, but also to reaffirm the importance of responsive education for all learners — including those whose learning needs may challenge us the most.

Patricia Rice Doran is an assistant professor of special education at Towson University. Her email is pricedoran@towson.edu.

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