Three years ago, our family faced a harrowing medical enigma that took my daughter away from us. Since then, I have divided my life into two distinct periods: before and after her descent into a severe psychological turmoil.
The ordeal began with a call from her grandmother. Seven-year-old Emma was visiting family in North Carolina over the Fourth of July when she developed an uncomfortable rash in her genital area, which extended down her inner thighs. After a visit to Urgent Care, the doctor diagnosed it as contact dermatitis and recommended a topical cream. With diligent application of the cream, a little more care when changing out of her wet swimsuit, and some attention to rinsing off after pool play, Emma’s rash eventually subsided.
However, something was undeniably amiss. According to her grandmother, Emma was obsessively wiping herself after using the bathroom, battling a distressing sensation of persistent dampness that wouldn’t relent despite her efforts. The bathroom trash was overflowing with wads of toilet paper, and flushing them became a source of panic as she feared the toilet would overflow. This compulsive behavior spiraled into anguish, with screams and tears marking her struggle.
During a frantic telephone conversation, her grandmother and I pondered whether Emma might have a urinary tract infection or an allergic reaction to the cream. In her early years, Emma had shown some sensory sensitivities, but I had chalked it up to her toddler stubbornness. By kindergarten, she had blossomed into a bright, sociable girl. Yet her current behavior felt like a troubling regression; a mix of panic and concern filled me, but I held onto the belief that this phase, like many others, would pass.
Upon returning to Texas, Emma’s days were plagued by obsessive-compulsive behaviors and sensory issues. A horse camp trip became a nightmare of too-tight hairstyles and uncomfortable footwear. At the Blue Hole in Wimberley, she found herself trapped in a cycle of needing to wash her feet repeatedly after stepping on the grass. Clean, dirty, clean, dirty—she was caught in this tormenting loop. Yet once she overcame the initial discomfort, she appeared able to engage in her activities, enjoying horse lessons and playing in the swimming hole.
As July progressed, additional peculiar behaviors emerged. Despite my attempts to secure a sick child appointment with her pediatrician, the staff insisted she needed to see a specialist instead. I felt helpless—my child was experiencing severe distress, and I couldn’t get her the help she needed.
With my background in counseling, I recognized that Emma’s rapid decline into OCD was unlike anything I had studied. The suddenness of her symptoms was perplexing. One night she fell asleep peacefully, and the next day she awoke in a state of terror. Searching online for answers, I stumbled upon terms like “acute onset pediatric OCD,” which led me to discover PANS (Pediatric Acute Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep).
The Pandas Network outlines that PANDAS involves a sudden onset of neuropsychiatric symptoms triggered by an immune response to infections like strep throat. Symptoms can include personality changes, obsessions, compulsions, anxiety, and sensory issues, among others. This revelation prompted me to call the pediatrician and, under the pretense of Emma having a sore throat, I secured an appointment that very day.
In our meeting, the pediatrician quickly identified the situation as PANDAS. Emma tested positive for strep, and her blood work indicated elevated strep titers, confirming the diagnosis. This was not a psychiatric issue; her earlier rash had likely been the catalyst for this turmoil.
The treatment for PANDAS, while relatively straightforward, is complex. It involves combating the infection, reducing inflammation, and restoring immune function. For mild to moderate cases, antibiotics and counseling can be effective, while more severe cases may require steroids, immunoglobulin therapy, and psychiatric medications.
Unfortunately, Emma’s condition worsened before it improved. She wore the same gray T-shirt to school for weeks and insisted on flip-flops instead of shoes. Her compulsive behaviors escalated; she lined up her belongings and rewrote her homework repeatedly due to fears of imperfection. The excessive wiping persisted, and she exhibited aggressive behaviors, including random outbursts toward me. The school was accommodating, but the emotional toll was profound.
Thanks to our pediatrician’s intervention, we sought further assistance. Following additional tests, we found the right combination of antibiotics, and by November, Emma was regaining her former self. However, PANDAS is known for its relapsing nature, and we have faced several flare-ups in the years since. Recently, Emma was exposed to strep again, and her symptoms returned, affecting her ability to participate in school activities and causing anxiety that has left her feeling trapped.
Despite the ongoing challenges, we are determined to navigate this journey. There is hope in knowing that she has a diagnosis and a path forward. This journey has opened my eyes to the importance of recognizing the connection between mental and physical health, advocating for comprehensive medical evaluations as part of emotional and behavioral treatment. I remain hopeful for Emma’s future; her spirit may be wounded, but her fighting spirit endures.
For more insights on PANDAS, visit the Pandas Network. You can also find valuable information on pregnancy and home insemination at this excellent resource.
In summary, Emma’s battle with PANDAS highlights the critical need for awareness and understanding of pediatric neuropsychiatric disorders. The journey from confusion to diagnosis and treatment can be fraught with challenges, but there is hope for recovery and a brighter future.