Three years ago, I faced a devastating medical enigma that changed my life. I learned to measure time as a split between the peaceful days before my daughter’s sudden descent into chaos and the tumultuous days after.
It began with a call from her grandmother while she was visiting in North Carolina for the Fourth of July. My seven-year-old daughter, Lily, was enjoying family time, but a distressing rash had appeared in her vaginal area, extending down her inner thighs. After a visit to Urgent Care, the diagnosis was contact dermatitis, and a cream was prescribed. With diligent application and some care in her post-swimming routine, the rash eventually cleared.
However, something was distinctly off. According to her grandmother, Lily had developed an obsession with wiping after using the bathroom. Despite her efforts, she felt an unshakeable sensation of wetness. The bathroom trashcan overflowed with toilet paper, and every flush was met with panic over potential clogs. Screams and tears accompanied her compulsive behavior, creating a heart-wrenching scene.
We pondered over the phone whether it could be a urinary tract infection or perhaps an allergic reaction, but Lily’s history of sensory issues made everything more complex. As a toddler, she had preferences for specific clothing, but I thought that was just a phase. Now, in her kindergarten years, she had blossomed into a lively, engaging child. But with her new behaviors, I felt a mix of anxiety and reassurance, believing it was just another quirk of growing up.
Upon her return to Texas, Lily’s days were marred by relentless OCD and sensory challenges. A horse camp outing turned into a battle against the discomfort of her boots, and a simple walk on grass sent her spiraling back to the water to wash her feet. The cycle of “clean, dirty, clean, dirty” trapped her in a loop of distress. Yet, once she moved past those sensations, she seemed to enjoy her activities again, even performing admirably at the camp’s final show.
As July progressed, her agitation fluctuated, and I began seeking help. Countless calls to her pediatrician’s office resulted in frustrating responses; they suggested consulting a mental health professional, but those appointments were far off. I felt desperate. With a background in counseling, I knew something was amiss—Lily’s abrupt change in behavior was unlike anything I had encountered in my studies.
A simple Google search for “acute onset pediatric OCD” led me down a rabbit hole of information about PANS (Pediatric Acute Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). The phrases “sudden” and “acute” struck a chord, and I felt a glimmer of hope.
The PANDAS Network describes the condition as arising from an immune response gone awry, triggered by infections like strep throat. Symptoms can include sudden personality shifts, obsessions, and sensory difficulties. With this knowledge, I contacted her pediatrician again, fabricating a sore throat to secure an appointment.
When we finally saw the doctor, she immediately recognized the possibility of PANDAS. Testing confirmed that Lily had strep. It was a relief to finally understand her behavior—her previous rash likely set off a chain reaction.
Treatment for PANDAS can be straightforward yet complicated. It involves antibiotics, anti-inflammatory medications, and behavioral therapy. Unfortunately, Lily’s journey was not linear. She wore the same gray T-shirt to school for weeks, and her compulsive behaviors escalated, resulting in emotional outbursts and irrational fears.
Thanks to our compassionate pediatrician, we sought further help and adjusted her treatment plan. By early November, Lily was back to about 95% of her vibrant self. However, like many autoimmune disorders, PANDAS is characterized by relapsing symptoms. Recently, Lily faced a significant setback after being exposed to strep, causing her anxiety to return and her social interactions to diminish.
She transitioned from a confident performer in a school play to a child reluctant to leave my side. This ongoing battle has shifted her diagnosis to a broader PANS category, as she grapples with more than just strep. Insurance complications mean that advanced treatments like IVIG remain out of reach for now, despite the recommendation from her physicians.
While Lily continues to face challenges, I consider her fortunate. We received a diagnosis and treatment relatively quickly, unlike many families still searching for answers. I often wonder how many children labeled with mental health disorders might actually be dealing with underlying medical issues. It is crucial to recognize the connection between physical health and mental well-being.
Despite her struggles, Lily’s spirit endures. Together, we hold onto hope for brighter days ahead.
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In summary, my daughter’s journey with PANDAS has been both challenging and enlightening. With the right support and treatment, we continue to navigate the complexities of her condition, holding on to hope for recovery and a brighter future.