Six Things I Wish PANS Parents Would Stop Saying

(An important note: I have been guilty of most of these at one point or another. I’m living and learning like everyone else. My hope is that we parents can elevate our conversations so that we are taken seriously by the greater medical community.)

“PANS is autoimmune encephalitis.”

Not all PANS is autoimmune. Nearly every expert in the field acknowledges that while some PANS is autoimmune in nature, triggers that are unrelated to autoimmunity exist including concussions, metabolic issues, and countless other possibilities.

Research has shown that 10% of children exhibit tics during the months when strep is rampant and this number drops dramatically in summer when it isn’t. Clearly these tics are immune-mediated, but the condition does not rise to the level of autoimmune encephalitis. Similarly, not all PANS symptoms that reach clinical significance are indicative of autoimmune encephalitis.

Some kids with PANS have autoimmune encephalitis. Some don’t. Most of our children are not getting a proper work up that would make it clear which camp they fall into. No doubt subgroups of PANS will emerge in time and at least one of these subgroups will accurately be defined as autoimmune encephalitis, but autoimmune encephalitis is not an accurate characterization of all PANS.

Your kid doesn’t actually have autoimmune encephalitis.”

Hold up. The science surrounding autoimmune encephalitis is in its infancy and accurate diagnosis remains mostly a matter of luck, so the inclination of some parents of children with clear cut autoimmune encephalitis to condemn other families into the “just PANS, not real AE” category is unsettling. A proper work up for both PANS as well as AE remains an anomaly regardless of severity of symptoms and we know there are probably dozens of brain auto-antibodies that remain unidentified today. Anti-NMDA receptor encephalitis, for instance, was only identified in 2007.

The percentage of children with PANS who have had a full medical work up remains miniscule, meaning a lot of the eye rolling that comes from the “real AE” camp is directed at families of children who really do have AE, but who have simply been unlucky. Perhaps their doctor isn’t apprised of the current research or maybe their child has an unidentified autoantibody. Based on the current science, stating someone else’s child definitely does not have autoimmune encephalitis is territory nobody should be venturing into. Let’s be compassionate and intellectually honest. The answer to “does that kid actually have AE?” is “Nobody knows. There are undoubtedly unidentified autoantibodies and unanswered questions.”

“It’s a vaccine injury!”

My vaccine views are well documented and I’m on your side friends, but not every child with PANS has a vaccine injury. We know this because tons of parents of vaccine injured kids chose not to vaccinate their younger children, yet many of those children still develop PANS.

“We’re resetting the immune system with IVIG.”

Sadly, a reset button for the immune system remains as mythical as a fairy godmother. True, IVIG is used in a variety of autoimmune and inflammatory conditions, however the mechanism of how IVIG helps control these conditions remains unclear. We don’t really know precisely how IVIG works in any autoimmune disorder, much less a condition as varied and diverse as PANS.

“My kid is exceptionally vulnerable because of MTHFR.”

MTHFR variants impact roughly 40% of the population which means the data linking it to any number of conditions is very uncompelling to the medical community. Is MTHFR a piece of the puzzle? Sure, but so are countless SNPs that we currently understand nothing about. We also know many children with PANS do not have MTHFR variants yet are severely impacted. Directly linking MTHFR to PANS belongs in the “needs more research” category if we are to be taken seriously.

“It’s Lyme!”

Now for the grand finale that will inevitably draw a large amount of wrath—please, can we take a little more care with our Lyme comments? Lyme has become a catch all for “serious immune dysfunction” of any sort. While the CDC is a most untrustworthy entity, what makes us think these Lyme labs should be trusted? Would they remain in business if their tests didn’t show Lyme the majority of the time? Has someone vetted their CEOs? Are we certain they’re completely honest and driven by something other than pure profit? Assuming these tests are reliable and valid, can we conclude Lyme is the problem versus simply another opportunistic infection in an individual with a compromised immune system? I’m not saying Lyme is not a problem. No doubt it is and it is responsible for some PANS flares, but “I don’t really know” is a far better reply than unbridled confidence that Lyme is the prime culprit in every case.

~Ashlyn Washington

P.S. If my tone offends, I apologize as it is not my intent. I’m not to the point of knowing if hot flashes are worse than PMS, but I am certain my mailbox is large enough to fit bottles of donated wine.

 

 

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