State-owned buildings across New York will be lit up green today to mark the International Day of Awareness for Pediatric Acute-onset Neuropsychiatric Syndrome and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections. Families can struggle to afford treatments following a diagnosis, but state leaders are working to change that.
Elizabeth Cooper’s daughter was two years old when she started experiencing severe obsessive compulsive disorder-like symptoms, seemingly out of nowhere.
“You know her reactions to things were just vastly disproportionate to what they should have been. A small setback could lead to a very big long tantrum, or things that most children might not necessarily think of as a setback or a problem. Like, for example, you know, if she wasn't the one who got to turn on or off the light, or if she asked for a snack and I put the snack on the table instead of handing it to her directly,” said Cooper.
Cooper adds the outbursts were almost impossible to control.
“I couldn't even ask what was going on. Sort of the train had left the station before you could even try to do all the normal things, like try to explain to the child or you know redirect in some way,” said Cooper.
She would later be diagnosed with Pediatric Acute-onset Neuropsychiatric Syndrome, or PANS. Some studies estimate one in 200 children in the United States are impacted by the condition.
“For a subset of children who show often sudden onset behavioral and emotional issues, the cause is inflammation in the brain, which is an autoimmune reaction triggered by an infection,” said Cooper.
Barbara Shepard is a licensed mental health counselor who specializes in pediatric OCD, anxiety and PANS/PANDAS.
“Traditionally, when we are dealing with symptoms like OCD, which is one of the core symptoms of these medical conditions, we would do a treatment called ERP — exposure and response prevention therapy. This is very effective for children with OCD. However, when we are dealing with an immune presentation of OCD it requires a much more flexible, nuanced approach. So, I am really working with the family to support them in assessing when the child is ready to engage in more of those therapy strategies and in the meantime, I am just helping to stabilize the system,” said Shepard.
Cooper says her daughter, now 16-years-old, has had various PANS flare-ups. Like any autoimmune disease, there’s always a risk of relapse.
“She was a straight A student who has a million friends, and she was you know she ran cross country. She was in the school play, she was a very busy, very normal girl, and when she is not so well, she's just really overcome by like huge anxiety that has actually made it impossible for her to go to school. At this point, she's been out of school for two years,” said Cooper.
While PANS and PANDAS are recognized as clinical diagnoses by the American Academy of Pediatrics, they are not yet universally accepted. Cooper calls them relatively new “paradigm shifts” in pediatrics.
For Cooper’s daughter, one treatment involved infusions to aid her immune response, the costs for each session exceeded $7,500. Other treatments remain prohibitively expensive for families navigating the complex conditions.
New York State Assemblyman Michael Cashman has sponsored a bill to alleviate some of that financial pressure.
“So, my bill is intended to require health insurance policies to cover the cost for PANS/PANDAS for their rehabilitation treatment. Patients frequently face insurance denials. The inhumane part of it is seeing children sidelined and not being able to live their full and healthy life. The situation forces families into difficult decisions choosing between financial hardship and medically necessary care,” said Cashman.
