Three years ago, my life changed forever when I lost my daughter to a medical enigma. Since then, time has been marked by her descent into a painful turmoil that I could not comprehend.
It all began with a call from her grandmother. My seven-year-old daughter, Mia, was spending the Fourth of July with family in North Carolina. Although she was enjoying her time, she developed a rash in her genital area that extended down her inner thighs, causing her discomfort. The doctor at Urgent Care diagnosed it as contact dermatitis and prescribed a cream. With diligent application, Mia’s rash healed, but something was off—something much more alarming.
According to her grandmother, Mia became fixated on wiping after using the restroom. She felt an overwhelming sense of wetness that persisted despite her obsessive attempts to feel dry. The bathroom trash was overflowing with toilet paper, and flushing it sparked fears that the toilet would overflow. Tears and screams filled the air as she battled a compulsion that seemed to consume her.
We brainstormed over the phone, wondering whether it was a urinary tract infection or possibly an allergic reaction to the cream. Mia had experienced sensory issues in the past, but I had assumed they were merely phases of childhood stubbornness. By Kindergarten, she had blossomed into a bright, sociable girl. But now, her behavior seemed eerily reminiscent of her toddler tantrums. I was worried but held onto the hope that this phase would eventually pass.
Upon returning to Texas, Mia’s days were increasingly marred by obsessive-compulsive behaviors and sensory challenges. Activities like horse camp turned into battles over tight ponytails and uncomfortable shoes. A visit to the Blue Hole in Wimberley saw her caught in a cycle of rinsing her feet in the water after stepping on grass. The torment of her compulsions brought her to tears, yet once she moved past the discomfort, she could enjoy her day.
Her agitation fluctuated throughout July, and I found myself making desperate calls to her pediatrician, only to be met with suggestions for psychiatric evaluations. As someone with a master’s in counseling, I was baffled by the sudden onset of Mia’s symptoms. How could a child who went to bed peacefully awaken as a different person? A search online yielded unexpected hope—terms like “acute onset pediatric OCD” brought me to references of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) and PANS (Pediatric Acute Neuropsychiatric Syndrome).
According to the PANDAS Network, PANDAS/PANS describes a rapid onset of neuropsychiatric symptoms triggered by an immune response to infections like strep throat. Symptoms can include sudden personality shifts, obsessions, tics, anxiety, and sensory issues. This information prompted me to immediately contact our pediatrician, fibbing that Mia had a sore throat to secure a same-day appointment.
When I finally saw the doctor, she immediately recognized the symptoms as PANDAS. Mia tested positive for strep, and her blood work indicated elevated strep titers. We had a diagnosis. The rash she had earlier that summer was likely linked to her current struggles.
The treatment for PANDAS is multifaceted, designed to combat infection, reduce inflammation, and support the immune system. Antibiotics, counseling, and sometimes steroids or intravenous immunoglobulin therapy are used. Unfortunately, Mia experienced a decline before she began to improve. She wore the same dove gray T-shirt for two months, insisted on flip-flops instead of shoes, and repeatedly erased her homework due to anxiety over handwriting.
Despite the challenges, we were fortunate to have a local pediatrician who directed us toward the right course of action. Additional blood work and a tailored antibiotic regimen eventually brought Mia back to about 95% of her former self by November. However, like many autoimmune disorders, PANDAS has a relapsing nature, and Mia has faced several flare-ups since her initial diagnosis.
This past January, after being exposed to individuals with strep, Mia’s symptoms returned. I could see the difference in her behavior; she withdrew from fifth grade, overwhelmed by anxiety. The emotional toll on both of us is profound, and while PANDAS remains a debated topic within the medical community, there is emerging research that offers hope.
I remain optimistic for Mia. Though her journey is fraught with challenges, her resilience shines through. Together, we navigate this new reality, mourning the days before but hopeful for brighter times ahead. For those facing similar struggles, resources like Kindbody and Cryobaby can provide guidance and support.
If you’re looking for more information on PANDAS, I recommend visiting PANDAS Network for valuable insights.
Summary
This article shares the poignant journey of a mother, Sarah, as she navigates her daughter Mia’s distressing battle with PANDAS, a condition triggered by infections like strep throat. The narrative details their struggles, the medical journey toward diagnosis, and the complexities of treatment. Despite the challenges, there is hope for recovery and an emphasis on the importance of understanding the connection between physical and mental health.