One afternoon, without any warning, my friend Leah experienced a terrifying situation with her son, Tommy. He exited the school bus in a fit of rage, tossed his backpack aside, and proclaimed he wanted “to die.” In a frantic moment, he seized a hammer from the basement, exhibiting an alarming burst of energy. “Kill me, kill me, kill me,” he yelled, oscillating between a catatonic state and intense fury.
Leah, overwhelmed with fear, managed to pry the hammer from his grip. She embraced him tightly, desperate to calm this child she no longer recognized. But Tommy was inconsolable, throwing himself against walls and screaming in anguish.
On that fateful day, Tommy, a boy known for his vibrant energy and cheerful disposition, was reported as being listless and withdrawn by his teacher. His breakdown had begun earlier that morning when he was told he had to join his babysitter at his sister’s dance class, triggering an overwhelming wave of sadness that kept him from participating with his peers.
Despite numerous examinations, no one could figure out what was wrong.
In hindsight, there had been subtle indicators hinting at underlying issues. In the months leading up to that harrowing day, Tommy exhibited unusual obsessive-compulsive behaviors. He insisted on showering and styling his hair to perfection each morning and only wore specific types of clothing. After a family outing to a bowling alley, his reaction to losing was disproportionate; he expressed feelings of having “bad thoughts.”
Days later, Tommy was taken to the emergency room where doctors conducted blood tests and a CT scan. The family was stunned when he was diagnosed with severe anxiety and subsequently admitted to an inpatient psychiatric ward. Leah reluctantly entrusted her son to the care of unfamiliar staff, collapsing in despair upon returning home.
Tommy was prescribed Prozac and taught coping strategies for his anxiety, and initially, it appeared to help. Leah was overjoyed when he returned home just in time for Christmas, prepared with his favorite snacks and the latest adventure book. However, just hours after his arrival, Tommy retreated into himself, adopting a fetal position. His demeanor darkened, and he began exhibiting tics. His behavior oscillated between dazed episodes and aggression, necessitating further medical intervention.
Despite extensive testing, answers remained elusive.
Gradually, Leah adapted to her new reality. Her once enthusiastic son now made strange sounds, suffered from uncontrollable tics, and often hid under furniture, repeating phrases incessantly. Each night, she checked on him repeatedly to ensure he was breathing.
Finally, a breakthrough came when an outpatient psychiatrist suggested that Tommy’s issues were not purely psychological but rather neurological. She referred him to a specialized children’s hospital where a neurologist proposed, for the first time, that he might have Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). This condition, affecting approximately one in 200 children, emerged in the 1990s but remains contentious, with skepticism from some medical professionals and insurance companies often denying coverage for related treatments.
Tommy was hospitalized and tested positive for strep, a precursor for PANDAS, as well as mycoplasma pneumonia. An MRI revealed abscesses on his tonsils, leading to their removal and treatment with Augmentin, a common antibiotic for strep infections.
However, despite aggressive antibiotic treatment, Tommy’s health continued to decline. He experienced months of severe anxiety, aggression, and obsessive-compulsive behavior, causing him to miss significant time from school. Once an enthusiastic reader, he lost interest in books and suffered from frequent urination, memory loss, and vivid hallucinations. The family dynamic changed drastically, with Leah’s daughter requiring a lock on her door for her safety, and Leah ultimately lost her job due to the demands of caregiving.
Determined to find help for her son, Leah sought out a neuropsychologist specializing in PANDAS, traveling hours for a consultation. The specialist confirmed the diagnosis and recommended immunoglobulin (IVIG) therapy, which research suggests can alleviate symptoms in severe cases.
Currently, Tommy receives weekly IVIG treatments, and while there have been some improvements—such as reduced aggression and occasional engagement with books—he still faces numerous challenges, including ongoing infections. Recovery is still a distant goal.
Recognizing the Warning Signs of PANDAS
As we enter a season where strep infections are common, it is crucial to recognize the warning signs of PANDAS, ensuring timely diagnosis and treatment. Symptoms may include:
- Obsessive-Compulsive Disorder (OCD) traits or tics
- Signs of ADHD, such as hyperactivity or inattention
- Heightened separation anxiety
- Emotional fluctuations, like irritability or unexpected sadness
- Sleep disturbances
- Frequent urination or bed-wetting
- Changes in motor skills or handwriting
- Joint pain
The past year has been a challenging journey for Leah and her family, united in their mission to raise awareness about a condition they had never encountered before. For more insights into related issues, check out our blog post about other parenting challenges here, or for more information about home insemination, visit here.
For those struggling with similar situations, the Cleveland Clinic provides excellent resources on topics related to pregnancy and home insemination, and you can listen to their informative podcast here.
Summary
Sudden behavioral changes in children can sometimes indicate serious underlying conditions like PANDAS. Awareness of the symptoms can lead to timely diagnosis and help families navigate these challenging circumstances.
Leave a Reply