AAP links condition to behavioral, developmental issues in children
Dec 17, 2024
LOUDOUN COUNTY, Va. (DC News Now)- A Sterling, Virginia mother Joey Batialle's once-typically developing son became a frustrated and anxious 5-year-old, collecting various diagnoses such as obsessive-compulsive disorder (OCD) and Attention-deficit/hyperactivity disorder (ADHD).
Little did she know at the time, Batialle's child was suffering from Pediatric Acute-onset Neuropsychiatric Syndrome, also known as PANS, which the American Academy of Pediatrics (AAP) said sparks a constellation of symptoms such as obsessive behaviors, aggression, restricted food intake, and regression of developmental skills such as speech.
The American Academy of Pediatrics released a report this week recognizing the diagnosis and establishing guidance for health care providers to treat the syndrome. PANS is thought to be triggered by an infection or autoimmunity issues.
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Batialle sought care through a number of avenues, including occupational and play therapies, to no avail. Her son's tics and discomfort persisted.
A turning point came when he was diagnosed with leukemia and doctors treated him with steroids.
"All of a sudden my very neurodivergent child became neurotypical, like overnight once he was put on these steroids. I said to the doctors 'Hey, my kid told me he loved me for the first time. His OCD is gone, his tics are gone. What's going on?'," Batialle said. "It turns out the steroids were treating the brain inflammation."
Batialle set out on a healing journey for her son, including two years of taking antibiotics.
"I got him back because of it," she said.
The AAP released guidance this week for medical providers diagnosing and treating PANS, and PANDAS, which is a subset of PANS stemming from a streptococcal infection.
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Treatment includes behavioral therapies for anxiety and avoidant/restrictive food intake disorder, antibiotic treatment, and therapies for neuroinflammation and autoimmune problems.
AAP directs providers to address PANS with a family-centered approach, exploring family history and conducting physical and psychiatric exams. If autoimmunity issues are suspected, some clinicians might pursue testing including an EEG, MRI, lumbar puncture, and autoimmune panel.
Batialle said that she feels the AAP's report does not cover the entire scope of issues that she has seen in her son and other children with PANS. The academy's guidance focuses on the abrupt onset of symptoms, but Batialle said her son's were more insidious. At the time, there was little information about what could cause behaviors like her son's.
“PANS can be a challenging and frightening diagnosis,” AAP President Benjamin D. Hoffman, M.D., FAAP, said. “It’s important for pediatricians to partner with families as they approach a diagnosis and prescribe evidence-informed treatments in concert with specialists and multidisciplinary teams.”
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The AAP is calling for robust research into the causes and treatment of PANS.
Batialle said the AAP report is encouraging, but much more must be done to help people suffering from PANS.
"I do hope and think we're going to see more root cause medicine start to come out, because the system is overwhelmed and these kids are going to become grownups," she said. "We see adults that are still struggling with it because it went missed as children."