By Kathryn Welby, Ed.D
Merrimack College
This issue of NASET’s Classroom Management series was written by Kathryn Welby, Ed.D. from Merrimack College. Educators are talking about a mysterious neuroinflammatory disorder impacting children’s academic and social success when sudden cognitive and behavioral shifts in children are perplexing, impacting students’ academic and social journey in ways we are just beginning to understand. Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and the broader category of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) present unique and challenging conditions often misunderstood in educational settings. These disorders are starting to get some attention as more and more students experience sudden and severe behavioral and cognitive changes triggered by infections. PANS and PANDAS impact a child’s academic and social life, prompting interventions and school support. Educators can be essential in identifying and supporting students within school environments. This article focuses on defining PANDAS and PANS and how educators can help.
PANDAS and PANS: What is it, and How can Educators help?
Educators are talking about a mysterious neuroinflammatory disorder impacting children’s academic and social success when sudden cognitive and behavioral shifts in children are perplexing, impacting students’ academic and social journey in ways we are just beginning to understand. Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and the broader category of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) present unique and challenging conditions often misunderstood in educational settings. These disorders are starting to get some attention as more and more students experience sudden and severe behavioral and cognitive changes triggered by infections. PANS and PANDAS impact a child’s academic and social life, prompting interventions and school support.
Educators can be essential in identifying and supporting students within school environments.
Meet Marcus
Marcus was a friendly and cheerful Kindergartener who brightened everyone’s day with his infectious positivity. He was the essence of a model student—loved by all, a role model for his classmates, and always eager to dive into learning and socializing with his many friends. Suddenly, his personality changed completely. Instead of the social child everyone knew, he was consumed by anger and would have yelling fits, uncharacteristic bursts of anxiety, and consumed with intrusive thoughts. His teachers reached out to Marcus’s parents out of concern. His family, dealing with similar situations at home, describes the situation as terrible, impacting the family dynamics and household calm. This once happy-go-lucky child refused to go to school, exhibiting intense outbursts and physically attacking his mother in anger. All his sudden actions and behaviors were completely out of character.
Meet Lucy
Lucy, a stellar 6th grader, had been cruising through her academic year with flying colors, boasting A’s and B’s. However, in February, there was a sudden decline in her academic ability. Her once sharp skills in reading, writing, and math plummeted dramatically. Her handwriting became illegible with reversed letters and words. She also confided in her teacher about the letters dancing erratically across book pages, making reading an arduous task. Her sudden academic decline prompted vision assessments in school.
At home, her family noticed worrisome changes in Lucy’s behavior. She developed sudden, compulsive tendencies toward food, expressing irrational fears about consuming uncooked and expired items and all-consuming worries about becoming sick that would keep her up all night. Lucy’s world seemed to be veering off course, leaving her family and teachers concerned about these abrupt and distressing shifts in her behavior and abilities.
What was going on with Marcus and Lucy?
After extensive evaluations, multiple medical consultations, MRI scans, labs, and therapy sessions, the eventual discovery unveiled a common thread between Marcus and Lucy, despite their distinct symptoms and behaviors: both had experienced a previous strep infection, resulting in the diagnosis of PANDAS. In their cases, Marcus and Lucy returned to their normal baseline behavior and cognitive capability once on an appropriate dose of antibiotics and anti-inflammations. Their symptoms were not defiance or mental health challenges; it was medical.
What is PANDAS/PANS?
According to Stanford University, PANDAS falls under the umbrella of PANS. PANS, standing for Pediatric Acute-onset Neuropsychiatric Syndrome, is clinically diagnosed in children displaying sudden and significant symptoms such as obsessions, compulsions, food restrictions, potential mood swings, irritability, aggression, anxiety, or anger that are closely linked to an infection. In other words, the associated behaviors are a response to infection.
Both PANS and PANDAS involve abrupt neuropsychiatric symptoms in children. While they share similarities, notably in their sudden onset and symptoms like Obsessive Compulsive Disorder (OCD), anxiety, and behavioral changes, they differ in triggers and diagnostic criteria.
PANDAS correlates explicitly the development of symptoms with a recent streptococcal infection. In contrast, PANS include a broader range of triggers, including other infections, metabolic disturbances, and inflammatory reactions, without mandating a confirmed recent streptococcal infection.
Ongoing research might reveal additional subsets of PANS, offering deeper insights into causes and suitable treatments. Aspire, committed to enhancing the lives of those affected by PANs and PANDAS, notes that the prevalence of PANS and PANDAS remains uncertain due to diagnostic challenges. The PANS consortium estimates these conditions may affect approximately 1 in 200 children, possibly more.
Given the underdiagnosis and relatively recent recognition of PANS/PANDAS as a disability, educators should be vigilant and knowledgeable about potential cognitive, behavioral, or mental health changes in students. They could be the first identifiers of the disorder, change the trajectory of the illness positively, and aid the student’s success.
PANDAS and PANS in School – Signs and Symptoms to be Aware of
As seen with Marcus and Lucy, teachers are often the first to notice signs of PANDAS/PANS. Teachers can play a crucial role by recognizing potential symptoms and reporting the changes they notice to parents. According to The PANDAS Network, there are symptoms and signs of illness. Some signs teachers should look for include:
- Deterioration in handwriting
- Change in behavior – becoming defiant, aggressive, or hyperactive
- Sudden separation anxiety
- Reports of severe OCD
- Sudden food restriction
- Decline in math ability
- Decline in overall academic ability
- Sudden and severe tics
Students may not have all these symptoms, but a combination of several, especially with a sudden onset, might indicate PANS/PANDAS. Diagnostic guidelines suggest a diagnosis of PANS if a person shows abrupt onset OCD and/or food restriction along with two other neurological or psychiatric symptoms from the list above. Identifying these signs early and reaching out to parents with concerns could help significantly impact a child’s life for the positive. Knowledge of this disorder may help prevent the possibility of misdiagnosis.
What Teachers Should Know About PANDAS and PANS and the Impact on School
Once diagnosed, students with PANS/PANDAS may face significant challenges affecting their academics and daily routines. Here are a few impacts on school:
- Handwriting deterioration can make writing uncomfortable and illegible.
- Sudden decline in academic ability.
- Attendance difficulties may arise due to OCD rituals, sleep disturbances, separation anxiety, and behaviors. Students might be absent for extended periods during illnesses.
- Emotional regulation becomes challenging, leading to rage attacks and personality changes, while tics, often uncontrollable and unrelated to intent, can also manifest. Invisible struggles like intrusive thoughts, depressive thoughts, and mental tics may start to show. Severe depressive symptoms, sudden hyperactivity or inattention, and focus challenges due to OCD or tic suppression add complexity to learning.
- Math skills might suffer temporarily and could require intervention if chronic.
- Symptom fluctuations, triggered by infections, can quickly worsen symptoms.
- Symptoms might vary daily due to episodic or cyclical patterns, emphasizing the dynamic nature of their experiences.
Snapshot of Suggested Accommodations for School
Students diagnosed with PANS or PANDAS may qualify for specialized accommodations tailored to their unique needs through an Individualized Education Program (IEP) or a 504 plan. During periods of illness or flares, 504 accommodations become particularly helpful and important. These accommodations may include testing and assignment adjustments, such as extended time for completing tasks and providing a distraction-free environment. Both high- and low-tech assistive technologies can be beneficial, ranging from speech-to-text software to devices like iPads or low-tech pencil grips for note-taking, aiding students with fine motor and processing speed challenges. Other accommodations might include alternate methods of accessing and completing assignments, oral assessments, prioritizing tasks to reflect the student’s competence, and utilizing notetakers or reduced academic loads during flare-ups. Additionally, accommodations for rest periods and breaks during the day prove beneficial, and home instruction for the possibility of extended absences ensures continuity of education while prioritizing the student’s health and well-being. Students may also benefit from attendance modifications and a modified school day. Fidgets, headphones, or other devices may be necessary to assist with sensory challenges. By implementing accommodations based on each student’s individualized needs, educators can foster an inclusive learning environment that supports the academic success and overall development of students with PANS or PANDAS.
In Summary
The sudden and profound behavioral and cognitive changes observed in children like Marcus and Lucy point towards a complex and often misunderstood condition known as PANDAS/PANS. These disorders, triggered by infections, manifest as a myriad of symptoms encompassing abrupt onset OCD, tics, mood swings, and cognitive impairments, among others.
The diagnostic challenges and the relatively low awareness of PANDAS/PANS necessitate help from educators. As frontline observers, teachers can help play a pivotal role in identifying signs such as handwriting deterioration, sudden anxiety, behavioral shifts, and academic declines. Early recognition and follow-up communication with parents are crucial for timely interventions that could significantly impact a child’s life.
Awareness and understanding of PANDAS/PANS is necessary as more and more students are diagnosed. Educators must be equipped with knowledge about these disorders. By fostering a supportive environment, advocating for these students’ unique needs, and providing appropriate accommodations, educators can become partners in ensuring that children with PANDAS/PANS receive the understanding and support necessary to successfully navigate the child’s educational journey.
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