I’m sure you’re aware that back in 2012, PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) was formally proposed and described in a white paper by a small handful of physicians who had extensive expertise in PANDAS. While this was welcome news to those who recognized that the neuropsychiatric features seen in PANDAS were also seen in the absence of strep, the decision to focus on acute onset in children over the age of two was not based upon any biomarker or science that would lend credibility to the theory that the pathogenesis of the described syndrome was unique solely to children meeting the diagnostic criteria set forth in the paper.
This syndrome could have just as easily been called “Pediatric Slow-Onset Neuropsychiatric Syndrome” but PSNS doesn’t really have a ring to it, and that wasn’t what the physicians wanted to talk about anyhow. They wanted to describe kids with lightening-like onsets whose parents could pinpoint the precise second their angelic school-aged child was lost to the monster known as PANS.
That would have been fine were it not for the fact that a discriminatory mentality quickly developed in which kids meeting strictly defined diagnostic criteria were deemed worthy of appropriate medical treatment and children not meeting the subjectively defined diagnostic criteria were deemed unworthy of proper care. In fairness, I know this was not the intention of the paper’s authors, but nevertheless, that’s what happened. Kids with identical symptoms but sub-acute onsets, autism diagnoses, or regressions in toddlerhood were branded with a scarlet A for autism, scarlet B for behavioral, or scarlet P for psychiatric and tossed aside accordingly.
What a large number of medical providers still fail to acknowledge is that PANS was not narrowly defined because there was evidence there was a distinct immune or inflammatory processes unique to that group of children. It was tightly defined to streamline and expedite research.
From their ivory towers, strict diagnosis zealots spout their disdain for their peers who have begun treating kids with sub-acute onsets and those with other developmental or neurological conditions. They join in a chorus of concern that other providers aren’t sticking to the strict diagnostic criteria. This begs the question—what exactly is the concern with deviating from what is essentially a research criteria? That kids are returning to baseline with antibiotics instead of remaining ill through trials of a dozen psych meds? That they’ll be spared the risks of antipsychotics including breast development in boys or the black box warnings on SSRIs that include suicide? Or maybe that they’ll avoid the trauma of separation from their family after being shoved into in-patient psychiatric units?
Somehow we identify family separation at our borders as hugely distressing and traumatizing, but when it happens to a kid with a treatable medical condition, it’s quid pro quo. The psychiatric community will work to lessen a kid’s OCD and other “behaviors,” but the side effect is going to be PTSD. Don’t like that? Too bad.
This antiquated model doesn’t acknowledge the trauma caused by separation. While hospitals recognize that laboring and post-partum mothers are better off with a support person in the hospital, an eight year old who expresses suicidal ideation at school is a different story. It’s entirely baffling that kids could be deemed better off without their families in the name of “safety.” However subtle, there is an alarming tenant held by the medical community that parents are partially responsible for reinforcing mental illness “behaviors” and need to be removed from the equation for the sickest children to conquer their demons.
The truth is, the current models used by the vast majority of the medical community to address neuropsychiatric problems in children aren’t working. Because of that, parents have decided it makes sense to search for solutions beyond the same treatments and therapies offered fifty years ago. That brings me back to my original point.
While the medical community haphazardly throws risky mood altering drugs at kids in an attempt to find one that works, they drone on that they can’t offer long term antibiotics and immunomodulatory treatments because kids don’t precisely meet the diagnostic criteria for PANS or because the treatments are not “evidenced based.” They fail to acknowledge the model they offer isn’t evidenced based either. There is a level of comfort many providers have with treating neuropsychiatric symptoms based upon archaic notions of mental health. Alas, comfort and familiarity isn’t evidence no matter how many times theories are repeated as though they’re facts.
Case in point, show me the study that proves that at a certain point (make note that the line is drawn in a totally different place depending on who you ask and it might be after a week of amoxicillin or after five years of Rituximab) a child’s behavior is just “learned” or “ingrained” and can only be reversed with therapy or psychiatric medications. Show me the study that supports the belief that kids with acute onsets of PANS have completely different profiles from kids with sub-acute onsets. Show me the study that proves kids with sub-acute onsets don’t have an inflammatory or immune mediated process impacting their mental health. More than anything else, show me the study that says that a subset of kids with autism can’t and won’t respond to immunomodulatory therapies and should be denied a trial of antibiotics, steroids, or IVIG because of this.
Parents happen to know a lot about the studies that do exist thanks to a little internet gem we know as PubMed. They know that a subset of kids with autism have improvements in aberrant behavior and social skills with IVIG thanks to this study here. They know there is solid evidence for the role of inflammation and immune dysfunction in autism thanks to the list of studies listed here. They know that kids with sub-acute onsets have been treated by one of the best institutions in the country thanks to this article here and they know that autoimmune encephalitis can have a sub-acute onset thanks to this PubMed article here.
Parents know. They aren’t phased by the politics that led to the name PANS instead of PSNS. They recognize that kids who regressed into autism at 18 months instead of into PANS at eight years old have more similarities than differences. They know it is just plain ridiculous to carry on about the dangers of antibiotics when the alternatives aren’t even close to risk-free. Parents don’t want to lose their child to suicide or drowning because a group of human beings created a diagnostic criteria in which the unintended consequence has been the medical neglect of literally hundreds of thousands of children who didn’t fit into the snug little box we call PANS.
Am I criticizing those who are treating strictly defined PANS? No. I am not even criticizing those who made the decision to strictly define PANS. I’m not naïve to how the game is played. I understand that research on a well defined subgroup will eventually lead to research and treatment for those outside of that box.
What I am saying is this: First, do no harm. Recognize that failing to treat kids because they don’t fit into a tiny box is harmful. Step away from this elitist mentality that PANS is something it isn’t. It is a name for a group of symptoms. A name created by human interest in one subset of kids. If evidenced based medicine means something to you, quit practicing as though you know kids with sub-acute onsets won’t respond to immunomodulatory treatments. There isn’t evidence of that. Quit practicing as though kids with autism couldn’t have PANS. There isn’t evidence of that. Quit practicing as though there is actually a point in which psychiatric medications and behavioral therapies are the clear choice. There isn’t evidence of that either. Quit deeming children who don’t fit the PANS criteria perfectly as mentally ill or “just autistic” and unworthy of thoughtful care. And for the love–quit acting as though your colleagues treating these kids are doing something wrong.
In sum, practice what you preach.