Mother becomes advocate for rare immune system disorder
By KEN NEWTON
Oct. 20, 2017
ST. JOSEPH, Mo. (AP) — The hardest part ... well, Melissa Spears can't really pinpoint that. When a child hurts, when no diagnosis makes sense, when no cure appears in sight, every part seems hard.
But the mother remembers moments: Her son, Carson, healthy one night, came to her the next morning with severe eye tics. Or that time she urged Carson to describe his discomfort, and the boy said his brain felt "on fire."
So many appointments with doctors, so many setbacks. Late nights on the internet, reaching out to other parents who might know something, grasping for any scrap of knowledge to make things better.
Then there came the fears. Not just the normal dreads of the young, but intense anxiety, the kind that lets a summer pass without the child leaving the house.
"We can put Band-Aids on boo-boos," Melissa said, "but we can't help his mind feel better."
This began in 2011, and the Spears family would eventually learn Carson suffers from Pediatric Acute-onset Neuropsychiatric Syndrome.
Known as PANS, the condition is a clinical diagnosis for an immune system malfunction that causes brain inflammation in a child, the St. Joseph News-Press reported. The symptoms Carson exhibited (the disquiet, the motor abnormalities, the rapid onset) lined up with this syndrome.
The prevalence of PANS, or that of a related condition called Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS), is largely speculation. According to Stanford Children's Health, they are "often overlooked by medical doctors because of the assumption that there is not an underlying medical cause for the patient's psychiatric symptoms."
The trigger can be the strep bacteria or the Coxsackie virus or assorted other germs.
"We had never heard of it at all. We had no idea what we were dealing with," Melissa said. "Instead of the antibodies attacking the bacteria and viral infections, they actually attack the basal ganglia of the brain."
Melissa, who grew up in St. Joseph and graduated from Bishop LeBlond High School, lives with her husband, Cory, and two children in Mooresville, North Carolina. She visited her parents in St. Joseph, Mark and Jane Hausman, recently.
Social media became a lifeline for the mother, a source of comfort and reconnaissance. Amid the pain of watching her child suffer, Melissa connected with those she regarded as "warrior parents" who shared information and compared experiences.
"It's amazing the amount of parents that are in the same situation that we are," she said. "There is an immediate connection and bond that you have with the parents going through the same thing."
Carson showed some improvements with typical treatments, antibiotics and steroids, but the family felt stalled. They turned with some reluctance to a doctor with a homeopathic background.
The initial consultation lasted more than three hours.
"I told her up front, 'I am a skeptic,'" Melissa said. "I was raised that when you get sick, you go to the doctor, you take medicine and you feel better."
The doctor asked the family to stick with her for three months, her and her nosodes and essential oils and holistic methods.
The family has stayed with the doctor for four years.
Today, Carson attends sixth grade in Mooresville, taking part in the school's gifted program. He plays basketball with kids in the neighborhood. Ask him anything about video games, and he will talk until you're tired of listening.
A school year's beginning proves fraught with risk for the 11-year-old. Being around other children means being around sickness. Any bacteria or virus affects him.
"It's the nature of the germ beast," his mother said. "We can't keep him in a bubble. We won't keep him in a bubble."
Carson will tell you he's healed, and the family loves his hope. And while he can better communicate the way he feels, the fears that show up on occasion, his parents look for a return of symptoms.
Things have improved immeasurably. But the vigilance on their part will not leave.
Melissa Spears wants to advocate for more education about PANS, wanting to help the way she was helped.
"We didn't stop until we got an answer," she said. "You're going to do whatever you need to do to help your child."
Information from: St. Joseph News-Press/St. Joe, Missouri, http://www.newspressnow.com