It started with what seemed to be an ordinary rash.
As Lisa Swint wrote on Alamo City Moms Blog, her seven-year-old daughter, Sophie, was visiting grandparents when she developed an uncomfortable rash along her inner thighs and crotch.
An urgent care doctor diagnosed Sophie with contact dermatitis. A prescription cream and some extra care cleared up the inflammation.Lisa Swint
But even though the rash was gone, Sophie insisted that something didn’t feel right. Swint wrote:
“According to Grammy, Sophie wouldn’t stop wiping after she urinated. She had this alarming feeling of constant wetness that persisted despite the ferocity and frequency of her wiping. She was desperate to feel dry. Snowball-sized piles of toilet paper spilled out of the bathroom trashcan. Flushing the paper invoked a secondary concern that the toilet would clog and overflow. Screams and tears erupted in equal measure as she fought and lost to the compulsion over and over and over again.”
At first, Swint thought her daughter might have a urinary tract infection (UTI) or a reaction to her medicine. As a toddler, Sophie had been particular about how her clothing felt. Perhaps this was just a recurrence of that childhood tendency.
But when Sophie returned home, she displayed more symptoms of obsessive-compulsive disorder (OCD). That was when Swint began to think this wasn’t just a phase. She wrote:
“By the time she returned to Texas, persistent OCD and a mishmash of sensory issues peppered her days. Horse camp with her cousin became a quagmire of too-tight ponytails and unbearable shoes. On a trip to the Blue Hole in Wimberley, leaving the water and walking on the grass provoked an immediate return to the water to rinse her feet. Clean, dirty, clean, dirty—she was stuck in a loop of repetitive behavior. Her inability to stop her march from the water to the grass caused intense agony and fear in Sophie.”
At times, Sophie was able to push past her sensory issues and enjoy her day. But Swint was concerned. She tried to contact her daughter’s pediatrician, but was told Sophie’s symptoms called for a psychologist or psychiatrist.
Swint was troubled. There was no reason to believe Sophie’s personality change was related to her rash. Yet, she had a feeling there was a connection between the two. She told Dearly:
“Sophie was out of town, and the Urgent Care she visited didn’t swab her rash. So we didn’t have anything other than a very general contact dermatitis diagnosis. We suspected the rash and the psychological symptoms were somehow related because of the proximity of their occurrence but didn’t immediately make the body/brain systemic connection. Maybe she was wiping because the rash caused bothersome irritation? Or maybe it was a yeast infection or UTI and felt really weird to a third grader.”
It was a difficult time for Swint and her family. She had a degree in counseling and knew that it was unusual for a child to develop OCD behaviors so quickly. She told Dearly:
“It was very frustrating because my mommy gut was screaming that something was way off. Psych symptoms don’t develop over night and take over every day functioning.”
That’s when Swint’s research led her to a set of little-known conditions: PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) and PANS (Pediatric Acute Neuropsychiatric Syndrome).
According to the National Institutes of Health, PANDAS and PANS occur when a child or teen has an abrupt, acute onset of OCD and other neuropsychiatric symptoms (such as anxiety, anorexia, irritability, and depression) caused by a misdirected autoimmune response to a strep infection or other bacterial, viral, or environmental trigger.
In short, PANS and PANDAS occur when the body’s immune system mistakes healthy brain tissue for the foreign infection. This is what causes the compulsive behaviors and other neuropsychiatric symptoms.
Stunned by how closely her daughter’s symptoms matched a PANDA diagnosis, Swint called her pediatrician’s office. To get past the front desk, she had to lie and say her daughter had a sore throat. To her relief, the doctor recognized Sophie’s behavior as a sign of PANDA and ordered a strep test.
The test came back positive, indicating that Sophie’s immune system had recently responded to strep bacteria. Swint wrote:
“We had an explanation for her behavior. My daughter was not in the midst of a psychiatric breakdown. Her rash earlier in the summer was the likely culprit.”
Swint told Dearly that it was a relief to have a starting point for treatment, especially because “many kids don’t get the right diagnosis for years and years.”
Sophie began a treatment regimen to fight the infection and rebuild her immune system. Unfortunately, the turn-around wasn’t immediate. In fact, her symptoms got worse at first. Swint wrote:
“She wore the same shirt to school for two months: a dove gray T-shirt, ironically, with a smiley face plastered on the front. Her doctor wrote her a note so she could wear flip flops instead of tennis shoes. She began to line up everything and write and erase her homework over and over again because her handwriting wasn’t perfect. The excessive wiping continued. My sweet, little love bug began to rage, randomly punching me. She decided her older brother was infected and had to shower if he touched her or any of her things. The school made accommodations for her many tardies and missing homework assignments. It was torture for everyone. Not only was she mentally and emotionally haunted, she also felt like a freak around her classmates.”
Fortunately, Swint had the support of their pediatrician and a specialist who helped them fine-tune their approach. Within months, Sophie’s OCD and anxiety had disappeared and she was nearly back to normal.
However, years later, Sophie still has flare-ups and relapses. After being exposed to strep in January, Sophie’s disorder reasserted itself. Swint wrote:
“Sophie went from performing as Wendy in Peter Pan Junior in December […] to withdrawing from fifth grade this spring, beaten down by anxiety attacks and afraid to leave her mother. The harrowing anxiety is hardest for her; for me, it’s the rage that carves a hole in my guts.”
Although the diagnosis has been difficult for their family, Swint acknowledges that there are many who have a harder path. Some parents go years without knowing the cause of their children’s psychological problems, possibly ending up with misdiagnoses or ineffective treatments.
Now, Swint is working to raise awareness of PANDAS and help other parents who may not have known the condition exists. She told Dearly:
“PANDAS is excruciating for the whole family. You will fall down many rabbit holes trying to find the right treatment for your child as treatment varies by child and symptom.”
Swint recommends that parents dealing with PANDAS join a support group. There are Facebook groups for PANDAS in nearly every state to offer comfort and information about local resources. She also suggests seeing a specialist or PANDAS-friendly doctor.
As she told Dearly, it’s important for parents to know that there is help out there for them and the promise of better days ahead: “Don’t give up hope. Kids do get better.”