Three years ago, my family faced a medical enigma that changed our lives forever. I now define time as the period before and after my daughter’s plunge into a whirlwind of distressing symptoms.
It all began with a call from her grandmother. My seven-year-old, Emma, was spending the Fourth of July with her family in North Carolina. While she was relishing the time spent with her relatives, she developed a rash in her genital area that extended down her inner thighs, causing her discomfort. An Urgent Care doctor diagnosed it as contact dermatitis, prescribing a cream for treatment. With diligent application of the cream, and with some extra care post-swimming, Emma’s rash eventually cleared up.
However, something was amiss. Emma’s grandmother noted that Emma was excessively wiping after using the bathroom. This compulsive behavior stemmed from an overwhelming sensation of wetness that wouldn’t dissipate, despite her relentless efforts. The bathroom trash can overflowed with toilet paper, and the fear of clogging the toilet added to her distress. Screams and tears filled the air as she battled this unrelenting urge.
In a frantic phone conversation, Emma’s grandmother and I speculated whether she could have a urinary tract infection or perhaps an allergic reaction to the cream. Emma had previously experienced some troubling sensory issues; her insistence on wearing soft clothes and specific types of footwear had seemed like typical childhood stubbornness. As she transitioned from a tempestuous toddler to a vibrant, outgoing kindergartner, her recent behavior felt disconnected yet eerily familiar. I was anxious, yet I hoped this phase would soon pass.
Upon her return to Texas, Emma’s days became overshadowed by persistent OCD and a myriad of sensory challenges. Horse camp with her cousin devolved into a nightmare of tight ponytails and uncomfortable shoes. A visit to the Blue Hole in Wimberley turned into a frantic cycle of rinsing her feet after stepping onto the grass, caught in a loop of compulsive behavior that brought her immense fear and discomfort. Yet, once she overcame the triggering sensation, she returned to enjoying her activities, relishing her horse lessons and swinging into the brisk swimming hole.
As July progressed, other peculiar behaviors emerged. My attempts to secure a pediatric appointment were met with frustration; the receptionists insisted she needed a mental health evaluation. Months-long waiting lists for psychologists left me feeling helpless. My child was undeniably unwell and required urgent assistance.
With a background in counseling, I was struck by the rapid decline in Emma’s mental health. While sensory issues and OCD are common in children, the abrupt shift in her demeanor was perplexing. How does a child go from peaceful slumber to a state of terror overnight? A quick online search led me down a hopeful path. My search for “acute onset pediatric OCD” yielded surprising results, revealing references to PANS (Pediatric Acute Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep).
According to the PANDAS Network, a diagnosis of PANDAS indicates that a child has experienced a sudden onset of multiple neuropsychiatric symptoms triggered by an immune response to infections like strep. The non-profit organization defines PANDAS/PANS symptoms as including personality changes, obsessions, tics, anxiety, and sensory issues, among others.
This newfound knowledge prompted me to call our pediatrician and request an urgent appointment. To navigate the front desk’s preliminary screening, I mentioned that Emma had a sore throat. I was desperate to get her seen that day.
As I stumbled over my words explaining Emma’s unusual behavioral changes, the pediatrician interrupted me, stating, “This sounds like PANDAS.” In essence, PANDAS occurs when antibodies produced in response to infections mistakenly attack healthy brain tissue, resulting in a range of neuropsychiatric symptoms.
Emma tested positive for strep, and blood work revealed elevated strep titers, indicating an immune response to the bacteria. She had PANDAS. At last, we had a reason behind her distressing behaviors. It appeared that the rash she had earlier in the summer could have been the catalyst.
Treatment for PANDAS is both straightforward and complex. It typically focuses on combating the infection, reducing inflammation, and restoring the immune system. For mild to moderate cases, antibiotics, ibuprofen, and counseling are recommended. More severe cases may require steroid bursts, immunoglobulin therapy, or psycho-pharmaceuticals.
Regrettably, Emma’s condition worsened before she began to improve. She wore the same gray T-shirt to school for two months, a shirt adorned with a smiley face. Her doctor even provided a note allowing her to wear flip-flops instead of the mandated tennis shoes. Emma’s compulsions intensified; she lined up her possessions and obsessively rewrote her homework due to perceived imperfections. The excessive wiping persisted, and she began to express irrational fears about her older brother, insisting he shower if he touched her or her belongings. The school had to accommodate her frequent tardiness and incomplete assignments. It was a torturous experience for all involved. Emma felt alienated and misunderstood by her peers.
I am deeply grateful for our local pediatrician, who guided us on the right path. Two weeks of antibiotics were insufficient for Emma, leading us to seek additional help from a specialist on the East Coast. They recommended further blood tests and eventually identified the appropriate antibiotic regimen. Some doctors suggest long-term prophylactic antibiotics to prevent future infections. Thankfully, by early November, Emma was nearly back to her old self, recovering from months of debilitating OCD and anxiety attacks.
Like many autoimmune disorders, PANDAS can fluctuate between periods of remission and relapse. Over the past three years, Emma has endured several minor flare-ups, which we managed with short courses of antibiotics. Unfortunately, she is currently experiencing a full-blown relapse. In January, she was exposed to multiple individuals with strep within a brief timeframe. Despite not exhibiting physical illness, her abnormal behaviors signal her struggle.
Emma transitioned from shining as Wendy in a school production of Peter Pan Junior—memorizing lines and singing with enthusiasm—to withdrawing from fifth grade, overwhelmed by anxiety and fearful of separation. The anxiety is her greatest burden; for me, it’s the rage that tears at my heart. Emma’s diagnosis has evolved from PANDAS to a broader category of PANS, as she battles more than just strep. Two of her doctors suggest IVIG (Intravenous Immunoglobulin Therapy), but our insurance considers it experimental. Although PANDAS remains a contentious issue within the medical community, ongoing research from the National Institute of Mental Health provides hope. For now, at a cost of $10,000 per treatment, IVIG is our last resort. We have a few more options to explore before tapping into college funds.
Despite her ongoing struggles, Emma is fortunate to have received a timely diagnosis and treatment. I’ve spoken with numerous parents who have faced far more challenging journeys, often taking years to find the right doctor or treatment. Psychiatric hospitalizations and homeschooling can become necessary for many families. It’s crucial to recognize how many children labeled with mental disorders may actually have treatable medical conditions. We must accept that the brain is an integral part of the body, and the connection between mental and physical health is undeniable. I hope emotional and behavioral treatments routinely incorporate comprehensive medical evaluations.
My optimism for Emma remains steadfast. While her spirit is bruised and her resilience tested, she continues to fight. Together, we grieve the life we once knew, but we are also hopeful that the future holds brighter days ahead. To learn more about PANDAS, visit PANDAS Network or explore Modern Family Blog for authoritative insights. For additional guidance on treating infertility, check out this excellent resource from ACOG.
Summary:
This article shares the emotional journey of a mother whose daughter, Emma, faced the challenges of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). It chronicles the initial symptoms, the struggle for diagnosis, and the treatment process, underscoring the importance of understanding the link between physical and mental health. Emma’s story highlights the complexities of PANDAS, the treatment options available, and the hope for a better future despite ongoing challenges.