By Caroline Crawford

When COVID-19 struck, every aspect of life was altered for everyone. Collegiate students stayed home to learn through Zoom, and the world seemed as if it had collapsed in the face of an unforeseen spread of the coronavirus. During the summer of 2020, nine-year-old Andrew (‘30) had his first experience with PANDAS, a neuropsychiatric disorder. With the world recovering from a pandemic, his family experienced an added hardship when Andrew faced symptoms, including anxiety and fatigue, with an unknown cause. 

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Commonly found in children from ages three to puberty, PANDAS is when a child experiences new symptoms of Obsessive-Compulsive Disorder (OCD), a tic disorder, or both after having a streptococcal infection, most commonly known as strep or strep throat. 

Creative rendition of Group A streptococcus bacteria. Image credit: NIAID via flickr.

Andrew’s parents caught a change in their son’s behavior when they noticed that he was increasingly fatigued, had constant headaches despite medication, and grew anxious to leave their side. His mother Patricia remarked, “I felt like I was losing my son. He wasn’t himself, and every single day, all day, was about trying to get him better.” 

Other families have struggled with this condition. On the website of the medical company Moleculera Biosciences, Natalie and Brian Barnes, parents of 11-year-old Parker Barnes from Minnesota, described their son’s condition before being diagnosed with PANDAS: “I would liken it mostly to an abduction. Something came in the window and stole our child and left behind this shell. Our kid is gone.” Parents of affected children notice that their usually positive, energetic, and loving child seems to disappear behind the veil of the symptoms caused by PANDAS.

Noticeable signs and symptoms of PANDAS include an abrupt onset of OCD, anxiety, depression, irritability or aggression, deterioration in school performance, and sensor and motor abnormalities. It is possible to treat the symptoms of PANDAS disorder, but it is more beneficial to treat the disorder itself. If the initial strep infection is still present, using antibiotics to fight the infection can help treat PANDAS. If treated quickly, it is possible to stop the symptoms of PANDAS. 

Alongside Ellie Featherston (‘25), I babysat Andrew in the summer when he first experienced his symptoms. We had watched him the summer before and noticed a considerable difference in his behavior. In contrast to the previous years, Andrew did not want to leave the couch and seemed unmotivated to play games that he used to enjoy. Andrew described his symptoms during that summer as feeling “really run-down, worried, unmotivated, and tired.” The energetic boy we had spent every day playing games with had lost a spark that he naturally had. 

After that summer, going to school became a daily struggle, instead of a daily routine. Andrew described his main struggle as “worry about having to do a summer-school program” due to the number of absences he had accumulated. He felt nervous and fatigued throughout the school day and often wanted to finish the school day early. Patricia described Andrew’s state as “stuck in a fear cycle,” where he was constantly worried about missing school or how his teachers would react to his absence. 

At the height of his discomfort, Andrew spent time doing things that would distract him, such as watching television or playing video games. When he was upset and worried, Patricia said, “It didn’t matter how much I told him it was going to be okay, it was like he had to think about it all the time.” Sometimes, the only way for Andrew to escape his anxieties was to watch television or have a stimulating distraction. 

Because streptococcal infections are rarer in adults, PANDAS disorder is unlikely to occur in those past the age of puberty. PANDAS can also be very difficult to diagnose, because there are many possible causes for such symptoms. A child with PANDAS may have multiple diagnoses before the true cause is discovered. Some children go to multiple doctors and receive treatments that don’t help them. 

When Andrew was finally diagnosed with PANDAS, doctors helped the family make a treatment plan and set him on his way to recovery. In response to Andrew’s diagnosis, Patricia said, “It was relieving to me to find out. Even though I didn’t want him to have [PANDAS], I knew we had a treatment plan.” Having the disorder named was a weight off the shoulders of the whole family. With a plan in place, Andrew could begin taking medication that would help him find his normal personality again. His family noticed his old self returning after a year of struggling with the disorder. 

Strep is prominent in children, and it uses molecular mimicry, meaning two or more antigens have similar structures, to stay undetected by the body’s immune system. When antibodies eventually detect and attack the strep virus, they also attack beneficial parts of the body, which can disrupt normal neurological activity. The unwarranted antibody attack can lead to an aggressive onset of the symptoms of PANDAS. Andrew personally experienced this when he tried to decrease the use of medicine. He was on antibiotics for 18 months straight, but every time he would stop taking the medication, his symptoms would come back immediately. It is important to discover what is causing the symptoms when treating a disease, to treat the cause instead of only the effects. 

Many people have never heard of PANDAS disorder, which can make getting a diagnosis for a patient difficult. When remembering Andrew’s diagnosis, Patricia said, “Some of the doctors we talked to didn’t know or understand what it was.” Having a disorder that is uncommonly known can be alarming, because many people don’t know how to properly treat it. The spread of PANDAS awareness can benefit patients and families around the world. The more knowledge that exists surrounding PANDAS disorder, the more help is available to those affected. 

There is limited knowledge of PANDAS disorder because it was discovered in 1998. Spreading awareness of PANDAS disorder is crucial to the success of affected children. They need to understand why their behaviors changed overnight, and if more physicians are aware, they will be more likely to prescribe the correct treatment for an afflicted patient. 

Recently, Andrew has learned to overcome his struggles with PANDAS disorder after being diagnosed. Occasionally, his immune system overreacts during stressful physical activity, and he will feel an onset of PANDAS symptoms, but he has no reason to fear, because he has a supportive family that knows what to do and how to comfort him.

Featured image credit: Shutterstock user VGstockstudio.