My son was abducted overnight, July 12, 2015, 12:15 a.m. to be exact, he says. It wasn’t aliens or a serial killer. It was—is—a brain infection. It has taken me and my family 7 months of utter, unimaginable hell just to get it diagnosed. We are still battling to find him treatment.
His disease is called PANDAS, and it is so rare, that most doctors not only have never heard of it, those that have, don’t even believe in it, even though it is recognized by the National Institute of Mental Health as a medical/physical disorder expressed psychiatrically because of its location in the basal ganglia of the brain. Those that do believe in it are still hesitant to treat because they’ve never done if before.
Six months ago, our son was playing at the river with his friends, his dog, and family. He was eating hotdogs and smores, chasing water skippers, and catching salamanders. He was laughing and smiling. He was living.
Today, our son is unable to go to school. He wears his dad’s shirt pulled over his head, though at times, he goes nude for days. In January/December. He hides all the time because he’s afraid—of what, he can’t clearly define or make sense of. He doesn’t eat, has gone days without food, has lost substantial weight, and hasn’t touched/drank water in weeks. He barely sleeps, can’t touch anything, uses his feet and elbows to open doors and turn on lights, has incontinence, and his pupils are constantly dilated (demonic-like if I didn’t know better and some days I didn’t).
He performs elaborate rituals for the simplest of daily activities. He has a variety of tics (arm swinging, spitting, leg kicking, eye rolling, shirt pulling, head tilting), Tourette’s (it’s not cute or funny at all), and has patterns upon patterns, that if you can’t also follow along with (which is like walking the tightrope over Mt. Kilauea), he goes into an aggressive, psychosis state.
We’ve been to the ER six times. There are 75 holes in our walls, two the size of a cookie sheet, most caused by his own hands, feet, and body. It would be easier at this point to tear the walls down rather than fix them. His behavior has digressed, he acts like he’s four, but he’s eleven, yet sometimes unusually clever. Once very brave, he’s now terrified of everything. We have to circle the block before we go home if people are near our drive. The clock is set for numerous tasks, and no one can move during them or something bad will happen to us.
We’ve met with so many physicians, psychiatrists, counselors, nutritionists, and psychologists, that I have to keep a running log just to remember who I talked to and what was said. After a tip from a social worker, who told us to look into PANDAS/PANS: Pediatric Autoimmune Neurological Disorder Associated with Strep / Pediatric Acute-onset Neuropsychiatric Syndrome, we finally, after a ridiculous amount of phone calls and $1000, were able to order the Cunningham Panel from Oklahoma with lengthy instructions on a blood draw, test tubes, and ice packs included.
But it would pay off. My son tested dangerously high on five out of five of elevated levels of antigens in his body being hijacked by his own antibodies. He only needed to be high for one of them. We believe a scarlet fever outbreak ( a form of strep) brought this on. Hearing this news felt like a win. We found out what was wrong, but now, we have the harder task of finding a physician that will treat him. And fast. He’s redlining.
For all you wonderful people still reading my post – please keep PANDAS in mind. Look it up, read the symptoms, remember them, SPREAD THE WORD, because there are families out there right now suffering unbelievable horror and they have no idea what is even wrong with their child and no one can help them. They and their doctors have probably never heard of PANDAS, so they need every shred of help, advice, tips or guidance they can get.
As far as writing goes, I haven’t had time for fiction, but I am still writing horror. Lots of it.
NATIONAL INSTITUTE OF MENTAL HEALTH
INTERNATIONAL OCD FOUNDATION
FOUNDER: DR. SUSAN SWEDO (video)
LATIMER, “One Size Doesn’t Fit All” (video)