All The Problems With PANS: An Open Letter To The Medical Community

Dear Doctor,

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.

~Ashlyn Washington

16 thoughts on “All The Problems With PANS: An Open Letter To The Medical Community

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  1. Could not have said this better myself!! This letter needs to be circulating in hospitals, doctors offices and within our political arenas.
    How can we get this out there???? It should be signed by all parents affected by PANS . Let’s change the medical world for our children!!

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  2. Truthbomb!
    Congrats on expressing so accurately the climate children really face.
    Hope this goes viral as it provides such clarity!

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  3. Very well put! I agree with many of your comments and appreciate your desire to promote this understanding. Yes, the acuity of onset in PANS/PANDAS has been held sacred in order to avoid controversy and facilitate research – by choosing a more homogenous presentation that is more likely to yield biological data, rather than by including subjects with more heterogenous conditions that may “dilute” findings. And there is even more politics beneath the surface occurring in this field (and every field of course, unfortunately). Thanks for referencing our paper from the 2015 JCAP Special Issue – it was partly designed to show that indeed so many children without acute onset are indistinguishable from those with acute onset in terms of presentation, severity, autoimmune family history, etc. Of course it is a slippery slope, and there is no research that supports including all children with PANS symptoms under the PANS rubric and consequent treatment…..but when one considers the idea of PANS as an autoimmune striatal encephalitis, then one could see that this could lead to a host of symptoms, even gradually, in developing children, including autism syndromes, Tourette’s, mood disorders, OCD, etc. Inflammation is at the heart of many of these psychiatric conditions (and medical ones as well!), and much more research should be concentrating on when the inflammation occurs in brain development and how it may lead to neuropsychiatric conditions, as well as the environmental and genetic contributions to etiology. Indeed, why the rise in autism incidence? Why the clear increase in neuropsychiatric disorders at an impairing level in school-age children over the last 30 years?. But politics are endemic to medical research, which leads to decades of delays in science that could have changed the world much earlier. Careful philanthropy supporting such research is one way to bypass this logjam, and it is much needed in our community. As someone recently recused from this research for political reasons, I can state as an “outsider” that those groups willing to study these concepts deserve all the support they can get. As far as clinicians, I sympathize with their plight as they are given conflicting information and not enough training on these matters, which tend to be cross-disciplinary and require “out of the box” thinking. It is through no fault of their own that medicine is organized into silos of systems (cardiology, pulmonology, neurology, psychiatry, infectious disease, etc etc) and thus medical care professionals are taught the think within their own silo only. When in reality these systems are all connected. But there are still some thoughtful and open-minded clinicians out there. How to separate them from the “quacks” is a whole another story, no easy task there. Good luck and keep pushing forward the search for the truth!

    PS – this link was sent to me by a family in Southeast Asia, where they had the hardest time getting clinicians to acknowledge PANS as a possibility…after much hard work they are getting proper treatment and seeing great benefits…keep plugging away!

    Liked by 1 person

    1. Dr. Chang, Thank you so much for taking the time to reply. I agree with you 100% and want to reiterate that this is absolutely not a criticism of the authors of the JCAP or the 2012 white paper. I recognize the authors as trailblazers and have been disappointed that the larger medical community has interpreted the articles and research to neglect children who fit outside of the box as I know that was not the intent of the authors. I’m infinitely grateful for your hard work and dedication to children with PANS over the years. Stanford has been a true leader and consistently I’ve heard nothing but humble, thoughtful, considerate responses from all Stanford doctors on the topics of acute onset, children with autism, those who don’t fit the PANS criteria perfectly and I’m grateful to every single one of you for being role models in how physicians should respond when the evidence in all these areas is still lacking. I truly mean this. I’ve heard “we don’t know yet” more times from Stanford doctors than any other PANS experts. This is what every doctor should be saying but instead most parents feel their kids with slow onsets or autism are just cast aside with a definitive declaration that the child is mentally ill. Again, thank you for your work and your thoughtful reply.

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  4. Extraordinary writing. Absolutely extraordinary. Ill be sharing this with our medical providers. Thank you for giving us the words and the logic to describe what we parents of these children tacitly know. Too often I get tangled up in emotion trying to make someone in this system care.

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  5. Dear Mrs. Washington,

    You hit the nail on the head.

    In fact, I wrote a paper way back in 2006 which discussed “chronic PANS”

    https://www.ncbi.nlm.nih.gov/pubmed/16970875

    I also described the “Exorcist Syndrome” in 2008

    Trifiletti RR, Lazar LL. “Exorcist syndrome”: a severe PANDAS variant. Presented, 37th Annual Meeting of the Child Neurology Society. Santa Clara, CA November 2008. Ann Neurol. vol 62, supplement S12

    Both of these papers were basically ignored at the time, but the ideas mentioned there have become gradually more accepted.

    I have spent the last 20 years studying this thing called PANDAS/PANS – as scientifically as possible, with detailed lab data on 5,000+ patients and detailed genetic data

    Here are my conclusions in a nutshell – and this is based on observations and data.

    1. PANS involves two mechanisms, occurring concurrently

    A. An “alternative fever response” mechanism – which dominates early on – usually antibiotic and ibuprofen response.
    producing “flares” and in severe cases “Exorcist spells”

    This is NOT an autoimmune disease

    B. An autoimmune mechanism — which only appears LATER in PANS, and leads to more chronic symptoms – no longer “flare” like.

    I think A may kindle B, but I am not yet confident of this

    2. If severe enduring symptoms that do not fluctuate and do not respond to ibuprofen/antibiotics appear suddenly in a previously well , it is probably NOT PANS – it’s an autoimmune encephalopathy (AE).

    If you recall, there was an entire 2-day conference in March, 2018 at Columbia Med on the PANS/AE overlap.

    I could have explained the key distinction between the two in 5 minutes. But I was not invited to the conference!

    3. PANDAS/PANS is not a disease in the traditional sense, any more than “fever” is a disease. It appears that about 1-2% of children do not have the usual fever and malaise response but rather a sudden, characteristic behavioral response.

    4. PANDAS, which means EXCLUSIVE strep triggers for every flare, is extremely rare, if it exists at all. It’s like saying every fever your child ever had was triggered by strep …. very uncommon. So your “non-believer” doctor is right, in a sense.

    Notice in the 2006 and 2008 papers cited above, I used the word PANDAS as the term PANS only came into existence after the Bethesda meeting from which the “White Paper” arose.

    PANDAS, IMHO should be expunged from the medical literature. But the word is more of a marketing symbol or meme at this point. Sort of like “Band-Aids” and adhesive strips, name is too catcy to disappear.

    5. PANS is very common. Think of a fever – many are acute and rise sharply, but some are chronic low-grade. The “A” for acute is neither necessary or sufficient in this clinically-defined condition.

    6. PANS, being an alternative fever response, unmasks your genetic predisposition. So at times, flares do not involved OCD and anxiety. If there are strong schizophrenia genes, flares can look psychotic.

    7. PANS presents differently in different age groups.

    A. The most common form, the one first described by Swedo et al, is the abrupt onset of OCD and/or tics, and usually peaks at 7-10 years of age. This should be called the Swedo Syndrome or Swedo Variant.

    B. Next most common, there is an adolescent form, pure anxiety/OCD which begins in the post-pubertal child, first described bu Kovacevic (aka Dr. K), see www,webpediatrics.com for a perfect description by Dr. K. This should probably be called the Kovacevic variant. I think there may be a pure tic version of this, which occured in the Leroy, NY cluster, and could be called the Leroy variant.

    C. I am confident that between age 3-6, PANS can present as a near-manic extreme hyperactivity syndrome.

    D. I am also confident that below age 3, it can appear indistinguishable from autism. That’s a really bold hypotheses and has to be tested carefully. Considering PANS is an aberrant fever response, can you see that this might provide a biological plausibility linking vaccines (really “mini-infections”) and autism? I discussed this last year at Autism One.

    So in summary this thing called PANS is a predominantly pediatric condition which is an ibuprofen-responsive alternative fever response which occurs in 1-2% of otherwise normal children. If unrecognized and/or untreated over over time, it may morph into a chronic autoimmune disease which no longer fluctuates in flare-like episodes and may be very difficult to distinguish from psychiatric illness. PANS unmasks genetic predispositions, and therefore its presentation can vary from patient to patient, and in different age groups.

    It should be clear that, if even part of what was said is true, PANS is by far the most common and important medical condition in child psychiatry. The training of the next generation of child psychiatrists needs to take this into account

    I am writing a book that will explain everything in detail and provide data. There is far too much information for a standard scientific publication.

    Best Wishes

    Dr. T

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  6. Hello Ashlyn

    thank you for your letter
    I totally agree with your comments.
    I’m pediatrician in Aix en Provence, in charge a lot of children with learning disorders.
    Their clinical picture are so closed to your Pans (OCD, tics and bipolarity) but without ealy onsets and strept evidence.

    Mood regulators and serotoninergics are not so effective
    i think i must start antibitotic prophylaxy even without evidence for strept.
    Evidence for strept is not so easy to obtain….

    thank you again

    françois xavier coudé MD
    http://www.dyskid.fr

    Like

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