Crystal Henry’s 5-year-old daughter, Violet, suddenly began acting grumpy and wetting the bed. The Texas mom-of-two just assumed it was a phase.
Soon after, Violet started having verbal and physical tics. She also became afraid to enter the preschool classroom which she formerly loved. Her parents still didn’t think too much of it.
“It wasn’t until Violet had a full-on meltdown over a potty break that I realized something was really wrong,” Henry wrote in an article for Romper.
“She told me she needed to go potty,” Henry wrote about the day, which later led to Violet peeing herself while standing in front of her Mom. “The bathroom was maybe 30 steps away, so I saw no reason why she couldn’t just go alone. She told me she was scared to go alone, but I couldn’t for the life of me understand why.”
In the article, titled “I thought my daughter was just moody, but it turns out she might have PANDAS,” Henry talks of her daughter’s behavioral changes and the series of events which led to an emergency room physician telling her about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS.)
Dr. Rebecca Vickers, a pediatrician from Maryland told TODAY parents, that the symptoms of the disorder always have an acute, immediate onset.
“This is a kid who is totally fine and all of a sudden, is obsessing or having compulsions or severe anxiety,” says Vickers, who explains that there are 2 versions of the autoimmune disorder — PANDAS. It is caused by the strep bacteria, and PANS, which can be caused by other infections and viruses, such as Lyme disease.
“An infection triggers an immune response that isn’t normal,” said Vickers. “It’s a misdirected immune response that causes inflammation in a child’s brain and leads to neurological symptoms.”
Vickers says, there are 5 criteria that must be present before PANDAS is suspected:
- significant obsessive/compulsive behavior or tics
- abrupt onset of symptoms
- a patient of prepubescent age
- a history of strep infection
- and a mix of other neurological symptoms like loss of appetite, bed-wetting, decreased school performance and behavioral regression.
“I really wanted to just let parents know that they should trust their gut,” Henry said to TODAY Parents. “I don’t want every parent of a grouchy child running to their pediatrician self-diagnosing, but I do think sometimes, as parents, we need to hear that children are inherently good and, more often than not, strange or unusual behavior is a red flag to an underlying issue.”
“It’s a heartbreaking rollercoaster because she’s really the sweetest, funniest little girl on earth,” Henry said. “I’m so thankful that I listened to that tiny voice that told me to seek help for her.”