One day, without warning, my friend Sarah’s son, Ethan, burst off the school bus, flung his backpack to the ground, and declared he wanted “to disappear.” With an energy that seemed unnatural for his age, he rushed to grab a hammer from the basement, exclaiming, “End it, end it, end it,” appearing both in a daze and filled with rage.
Terrified, Sarah managed to wrest the hammer from his tight grip. She hugged him tightly, desperate to console a child she barely recognized, but he was inconsolable. He broke free, crashing to the floor and throwing himself against the walls, wailing and screaming in distress.
On that fateful day, January 15, 2019, Ethan, a boy known for his exuberance and curiosity, was withdrawn and morose at school, as reported by his teacher. The incident that morning occurred when he was told he had to go with his babysitter to his sister’s dance class, triggering an overwhelming sadness that made it impossible for him to interact with his peers.
At the time, no one seemed to understand what was happening.
In hindsight, there were signs that something was wrong. Ethan had begun displaying unusual obsessive-compulsive behaviors in the months leading up to that harrowing day. He insisted on showering and styling his hair perfectly each morning before school, and only wore shirts made from a specific material. After a family bowling trip, he became irrationally upset when he lost, expressing that he was having “bad thoughts.”
A few days later, Ethan was taken to the emergency room, where doctors conducted blood tests and a CT scan. Confounded by the results, he was transferred to another facility, where he was diagnosed with severe anxiety.
Sarah was devastated to learn she had to leave her son at an inpatient psychiatric ward for a week. When she returned home, she felt as though she had left a piece of her heart behind.
Ethan was prescribed medication and learned coping strategies for managing his anxiety, which initially appeared to help. Sarah was overjoyed when he was released on Christmas Day, eager for a quiet day of reconnection, stocked with his favorite snacks, books, and gear.
However, just hours after returning home, Ethan curled up in a ball. His skin took on a grayish hue, and his behavior deteriorated rapidly. Tics began to emerge, and he oscillated between a trance-like state and aggression, requiring him to return to a doctor’s care.
Despite numerous evaluations and assessments, clarity remained elusive.
Sarah became accustomed to a new reality. Her once vibrant son now made distressing noises, suffered from uncontrollable tics, and often hid under furniture, repeating phrases incessantly. She checked on him countless times each night to ensure he was still breathing.
Finally, an outpatient psychiatrist offered a glimmer of hope. Convinced that Ethan’s issues were neurological rather than psychological, she noted irregularities in his gait and dilated pupils, leading to a referral to yet another children’s hospital.
A child neurologist confirmed the psychiatrist’s suspicions, suggesting for the first time that Ethan might have Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). The PANDAS Network describes this rare condition, which affects about one in 200 children, as both controversial and often unrecognized by many medical professionals.
Upon admission to the hospital, Ethan tested positive for strep—an indicator of PANDAS—and mycoplasma pneumonia. An MRI revealed abscesses on his tonsils, leading to their removal and a prescription for Augmentin, the antibiotic commonly used for strep.
Despite receiving two types of antibiotics, Ethan’s condition worsened. He missed months of school due to aggression, obsessive-compulsive behaviors, and debilitating anxiety. Once fond of reading, he lost the desire to pick up a book and experienced frequent incidents of uncontrollable urination, severe memory loss, and vivid hallucinations.
Ethan became trapped in a cycle of home, hospital, or doctor’s office visits. His sister even had to secure her bedroom door for safety, and Sarah lost her job due to the demands of caregiving.
Determined to seek help, Sarah located a neuropsychologist specializing in PANDAS cases and traveled hours for a consultation. He confirmed the diagnosis and recommended immunoglobulin (IVIG) treatment, which research indicates can alleviate symptoms in severe cases like Ethan’s.
Ethan now receives IVIG weekly, and there have been some positive changes. He no longer runs away and experiences fewer urinary incidents. Occasionally, he picks up a book or engages in drawing, but he still grapples with various complications, including recurrent infections, and is far from fully recovered.
As the season for strep infections approaches, understanding the warning signs of PANDAS is crucial to ensure timely diagnosis and treatment. Children may exhibit one or more of the following symptoms (Ethan had all of them):
- Obsessive-compulsive disorder (OCD) symptoms and/or tics
- ADHD symptoms, such as hyperactivity or inattention
- Separation anxiety (e.g., extreme clinginess to caregivers)
- Mood volatility, including irritability and emotional lability
- Sleep disturbances
- Bedwetting at night or frequent daytime urination
- Changes in motor skills, including handwriting
- Joint pain
The past year of navigating PANDAS has been profoundly challenging for Ethan’s family, yet they remain united in their mission to raise awareness about a condition they had never heard of before it transformed their lives. For more information on this topic, you can visit the PANDAS Network.
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Summary
This article recounts the harrowing journey of a mother, Sarah, whose son, Ethan, exhibited sudden and severe behavioral changes indicative of PANDAS. Initially misdiagnosed with anxiety, Ethan’s condition was later identified as PANDAS, a rare disorder following streptococcal infections. The narrative highlights the importance of recognizing symptoms for timely diagnosis and treatment. The family’s story serves as a reminder of the challenges faced by those dealing with such rare conditions and their commitment to raising awareness.