Last Updated on March 19, 2022 by admin
I still remember the first time I stumbled upon the word PANDAS. Through clenched teeth and tears, I had been frantically researching rapid onset OCD and sensory disorder using various keywords or phrases. Something was suddenly very wrong.
I remember the first thoughts I had when I stumbled upon this very succinct description of a strep-induced obsessive compulsive disorder, first online and then by our pediatrician. I thought, “Hmph, sounds too easy. We wouldn’t be so lucky to have a form of OCD that seems so simple–that is treatable with antibiotics and that only comes around during a strep infection.”
“Too easy…”
I so clearly remember having that thought. Over the years, the irony of that moment has felt almost comical at times. At other times, cruel.
But there would be nothing easy here.
Fast forward five years into our PANDAS/PANS journey, and I’ve learned that there is nothing easy at all about a broken immune system who identifies “self” as “enemy”– who targets that part of the anatomy, which is the very essence of SELF– the thoughts, behaviors, and emotions.
At that naïve time, we could not have imagined a world where doctors didn’t have all the answers, treatments were expensive and impossible to come by, and a shape-shifting pernicious disease just continues to evolve into something more insidious and more complex.
It would have been hard to imagine then– the immune and autoimmune diagnoses beginning to stack on top of one another like wobbly Jenga bricks– never knowing which illness/exposure could topple the whole thing.
Or maybe a better analogy is an unarmed soldier navigating through a minefield.
When a PANS child steps on a cold, little bombs go off. Then she steps on mold or too much chlorine, and there is another explosion. She’s dodging coughs like bullets in a battlefield. Your flu is a missle. Your sore throat can be her dynamite.
And then its immune deficiency
And then it’s thyroid disease
And then it’s panic disorder–
Asthma and intestinal distress
And malabsorption.
It’s antibiotics, steroids, and IVIG.
And for many, the list goes on…..
And then it’s fighting– it’s white-knuckling your way through doctor appointments, therapy, calls with insurance, family holidays, and school.
It’s paying out of pocket for every travel expense, doctor appointment, therapy, treatment or supplement that might make some difference.
It’s getting so many labs, procedures, and instructions from specialists that you can’t hold it all in your head until you just have to shut it out for a moment and take a little break–
and try to pretend that everything is normal for a while.
It’s trying to manage a career and constantly being reminded that there are more important things.
And through the struggle, you watch your child become a fighter too, and that’s kind of beautiful because you know that she’s being prepared for something big one day.
But she’s hurt and she’s angry, and she sometimes talks about giving up.
And it’s in those moments when you dig into the very depths of your being to convince her that she’s worth fighting for.
The way that you never stopped, and WILL NEVER stop
— even in those moments when you close your eyes to catch your breath.
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