Many of us are so incredibly nervous about the 20/20 story tonight on PANDAS. Will they lean into the controversy piece? Will they mention PANS, Lyme and Mast Cell Disease? Will they act as if a 10 day course of penicillin at onset is the ultimate answer and share the message that if providers follow suit that this nightmare would all go away? Should we even care? Is any press good press?
So many of us have tried to remove the word PANDAS and “controversy” from our vocabulary this past year. Not because PANDAS isn’t important, or the diagnosis isn’t still controversial (otherwise we wouldn’t all feel vindicated by the story) but by focusing our awareness and research efforts solely on the kids that have strep, we leave out all those who don’t. And let’s be real, when physicians test for strep throat and it’s negative, often times our families kinda get that “I told you so” vibe since usually we are the ones who insisted on the strep tests in the first place. We worry that because of this, those with mycoplasma, metabolic problems, autism, Lyme and mast cell disease will be written off as psych without further investigation. But that was happening already anyway, right?
But still, we remain nervous. We’re nervous that the larger portion of kids, those without elevated strep titers found on their lab reports, that didn’t have a sudden dramatic overnight onset where they were an angel one day and then seemingly possessed the next, will be even more of a target of disbelief because we “don’t have strep and look like that horribly severe case we saw on the news.”
We worry that those in our community with a PANDAS diagnosis will finally be heard, but, well, kids like ours will not only be outcasts, but we’ll now be the outcasts of the outcasts.
And so now, in addition to our worry, we’re ashamed of being so desperate for acknowledgement and help for kids like ours, that so many of us aren’t jumping for joy for the strep only kids getting their day in the spotlight. I mean, it’s not like they don’t suffer just as profoundly as PANS children do, many of them even moreso. We all know this to be true. So what is it that has us in such distress?
Those are the thoughts that have been running through our brains for the past 48 hours since hearing the news of the 20/20 story. And our absolute biggest fear, is that 20/20, guided by the well meaning experts who serve our community, in an honest and noble attempt to stop the bleeding, may ultimately paint the picture that pediatricians can stop this disease from existing all together if they recognize early and properly treat. And that if that becomes the focus and take away of people everywhere, that the massive outcry about the need for research for those of us who weren’t so lucky, will be silenced.
We should then now go on to state the obvious…. OF COURSE we want recognition of PANDAS even if PANS children are still left in the shadows. OF COURSE we want them diagnosed and treated and given all the support and love they deserve. OF COURSE. OF COURSE. OF COURSE we want to save lives and celebrate prevention methods. But that inner broken thing inside of us whispers, no nags, “What about my kids?”
And our worry doesn’t stop there. When the story airs and parents come out in droves….because THEY WILL come out in droves… Will worried mother’s across the nation know where to go? Most PANDAS experts have a minimum of a 6 month wait list, some PANDAS providers have a 2 year wait. No worried parent can or should wait that long to find out if their child’s mental health condition is caused by immune dysregulation. By then, it will be too late if indeed it is true that early treatment with antibiotics will put PANDAS in remission.
Will 20/20 mention that pediatricians across the country can contact Arizona’s CPAE clinic for support? God we hope so. Otherwise, we worry that the increase in awareness will also lead to exhausted providers who ultimately stop taking patients because they’re too stressed by the overwhelming need. And we worry that only rich and middle class families will get help since most of these providers don’t take insurance and the treatments and appointments can cost 10’s of thousands of dollars.
This is the mind of the PANS parent. We worry. Even when good things like a massive news story coming out that could change the landscape for all of us, we worry that the fragile and fractured community will be left even more broken than it was already. We, like the children we love so very much, are afraid of the world around us. Because we have been met with such hostility, such doubt, such condescending rhetoric (often times even from those we love the most) that we worry that anything, even really really good things like stories on 20/20, will just leave us even more isolated, out on our lonely island, where so few visitors dare to travel.
