On January 9th, we finally got a diagnosis for Peach.
It was not a surprise. I’ve suspected we were dealing with this disorder for more than two years, but it’s an illness that’s not easy to pin down. And strangely, it bears (no pun intended) an acronym that is not only cute, but black and white… and this condition is ANYTHING but.
Our daughter has PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
For those of you in the dark, PANDAS is the result of a misdirected response by one’s immune system to a strep infection… a child gets sick, and their body launches an assault on the infection, but because of something called molecular mimicry (a bacteria’s way of hiding from the host’s immune system,) it also mistakenly attacks the child’s basal ganglia, the part of the brain responsible for behavior and emotions. Hence the last three years of hell our family has been through.
You might recall, if you’ve been with me since my first post, that things got really bumpy here at the UpLifted House in the fall of 2014, thus prompting me to set out on my spiritual journey and attempt to set things right again. But what a rough road it’s been… With the benefit of hindsight, I can see now that Peach’s illness was at the heart of so much struggle; the afternoon meltdowns every day after school, the bickering between kids when one was stressed beyond her limits, the frustration of a spouse coming home every night to chaos… I’m more sad than angry; we could’ve been spared SO much, if only… if only the pediatrician had recognized the litany of symptoms and thought to swab my daughter for strep instead of prescribing Prilosec and melatonin for anxiety… if only the school nurse had understood why Peach appeared in her office, day after day… if only the teachers had realized why her test scores plummeted from one year to the next… if only I had listened to my gut instead of listening to the many “experts.”
So many missed opportunities to save my family…
Unless they are diagnosed and treated early (and very few of them are,) a child with PANDAS grows increasingly ill every time they get sick, and their brains are put under more and more strain. Eventually they don’t even have to GET sick – just being exposed can cause their immune system to “flare” (Dragon’s recent bout with strep sent his sister into a tailspin) and bring on a slew of behavioral challenges, from ADHD-like symptoms, to raging and tantrums, to behavioral regression. I’m sure you can imagine the horror of all this happening to your normally-functioning child, who becomes a shadow of their former self in a matter of days or weeks – for some, overnight.
So, we are slowly adjusting to the new normal around here, the thousand shades of gray where we once had black and white. Many days we walk on eggshells, we hold our breath, we time things as precisely as possible – because it can all go to hell on a dime if we don’t. It’s a lot like the weather here in southern Ohio… if you don’t like it, wait a few minutes… Things can seem so bleak one moment that we cannot see a way out of the storm, but with the right distraction, a trigger that we can never identify ahead of time, we can snap out of it as quickly as we snapped in. Then life goes on. And we lift our faces, waiting for the moment the sun peeks through the dark, gray clouds.