I had never seen anyone quite like “Max.” The plunge from what appeared to be a normal 8 year-old boy to a scared, paranoid, fragile child who was grasping to hold on to reality was striking. Max knew what many of his doctors had yet to discover, he had a raging strep infection. And, this infection, like many times in the past, would run rampant in his body, largely undetected, causing him to experience a host of symptoms of serious mental illness.
In 1998, Dr. Susan Swedo, a researcher at the National Institute of Mental Health (NIMH), first described in the scientific literature a subtype of OCD in which children demonstrated an abrupt onset of neuropsychiatric symptoms (OCD, tics, ADHD-like symptoms, anxiety) preceded by streptococcal infection. This syndrome was termed PANDAS, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. In PANDAS, the body’s immune system is over-reactive to strep bacteria, leading to psychiatric and neurological symptoms.
The greatest challenge for Max was the professional community’s debate over the very existence of PANDAS/PANS.
BECOMING A BELIEVER
As this blog would suggest, I want to see evidence, evidence for the characteristics that define psychiatric disorders, evidence for the efficacy of treatment of these disorders, and, certainly, evidence for the etiology of their onset. While it is true that there is a growing evidence base for the existence of infection-induced mental illness, identifying which infectious agents have this potential, for whom, in what ways these reactions manifest, and how to best approach treating the symptoms and/or causes remain unclear, at best. Thus, 14 years after its introduction, PANDAS remains controversial. Meeting “Max” made me a believer.
Just two years after Dr. Swedo introduced PANDAS in the scientific literature, during my doctoral training, I was gaining experience in an outpatient practice specialized in the treatment of OCD and also conducting OCD and trichotillomania research at NIMH. In addition to my therapy cases, I was assigned the psychological testing of an 8 year-old boy, Max, who was involved in Dr. Susan Swedo’s PANDAS studies. I had no prior experience with PANDAS and was interested to learn, thinking it would be very much like other OCD cases I had seen. This was far from a typical OCD case. This was PANDAS.
Max was very friendly and interested in our meetings, as were his parents. He was engaging, speaking of his interests, friends, and school. He appeared to be a typical 8 year-old boy. Max’s parents described their son as having a sudden onset of OCD, tics, and other symptoms, which began when he became sick with “strep throat.” Identifying strep infection was a challenge, however, as Max was often asymptomatic. Throat cultures often resulted in false negatives and his infections could only be reliably identified by blood titer. Max’s parents reported that once treated with antibiotics, his symptoms largely disappeared, until another bout of strep would again trigger a dramatic worsening of symptoms. This cycle happened numerous times per year and was very distressing to their family.
Max retuned to the office to complete testing one week later. I was taken aback by how dramatically different he appeared just one week after our initial meeting. What had been a calm, happy child with no apparent symptoms, was now an extremely anxious, agitated, and suspicious child, with several motor tics, and numerous repetitive compulsive behaviors and obsessive thoughts that harm may come to him or his family. [Max had been diagnosed with strep since last we met.]
Max had great difficulty focusing on and completing tasks, requiring frequent redirection. He was restless, constantly in motion, and was preoccupied with feeling as though we were being watched through the walls, perseverating on these concerns over and over again. I observed compulsive rituals throughout our meeting, including counting, checking, and frequent reassurance seeking. Several motor tics were observed, including eye blinking, facial movements, and brisk arm movements. He reported that he had not eaten much during the week due to a dislike for specific food textures as well as difficulty sleeping.
I met with Max and his parents 1-2 weeks later to provide them with feedback of the assessment. Since our last meeting, Max had received a course of antibiotics and his symptoms had nearly disappeared. He was, once again, a seemingly “normal” 8 year-old boy. I was amazed at how dramatically different Max appeared. He expressed a strong desire for treatment, telling me that he did not feel like himself and felt “out of control” when he was sick and experiencing PANDAS symptoms.
Max’s treatment plan included cognitive behavioral therapy and prophylactic antibiotics. It was an ongoing struggle to keep his infections and psychiatric symptoms at bay. I do wonder, now 14 years later, what happened to Max. I’ve seen a number of PANDAS cases to date, but none quite like Max.
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