Crystal Henry always thought her daughter Violet was a happy kid-she'd even avoided the terrible twos. But everything changed when the 5-year-old began experiencing constant mood swings and bed-wetting incidents.
"It wasn't just a phase," Crystal wrote in an article for Romper. "Violet continued to behave erratically, with extreme mood swings. She also started to exhibit verbal and physical tics, which she had never done before."
After a trip to the doctor, Crystal learned that Violet's erratic behavior could be linked to Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS). In the article, Crystal explains how her daughter's out-of-character "meltdown over a potty break" resulted in an emergency room visit that helped Crystal understand how PANDAS was affecting her child.
"[The doctor] explained that PANDAS [...] is basically a strep infection that is lurking in the body disguised as normal healthy cells," Crystal wrote. "PANDAS weakens the blood-brain barrier and irritates the part of the brain that regulates things like movement, logical thinking, emotions and reasoning."
Rebecca Vickers, M.D., spoke to Today based on her experience treating PANDAS patients. "This is a kid who is totally fine and all of a sudden, is obsessing or having compulsions or severe anxiety," said Dr. Vickers.
According to Vickers, a pediatrician from Maryland, the patient is usually a child with a history of strep throat and showing a mix of other nervous disorder signs such as tics, bed-wedding, behavioral regression, or a loss of appetite.
"The ER doctor said the diagnosis is controversial, because there is no one definitive test that can say whether or not they have it," Crystal added. "But with her tics, mood swings and obsessive-compulsive behavior, Violet was showing telltale signs of the disorder."
While Vickers warns that the condition may be "rare" and "mysterious," Crystal wrote the article to spread awareness about PANDAS as a general warning.
"I really wanted to just let parents know that they should trust their gut," Crystal told Today. "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."
Crystal told Today while her daughter hasn't received an official PANDAS diagnosis, she has a "gut instinct" that Violet does have the condition. Meanwhile, Violet is receiving treatment for gastrointestinal issues and her mother plans for her to take allergy and celiac disease tests.
"I think we can beat this," Crystal told Today. "She started singing in the shower again. I know that seems weird and small, but it's really a sign that my happy girl is still in there somewhere, and I know we can bring her back."
Read Crystal's full story on Romper.
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