McCall 9-Year-Old Climbs Out From 'Lonely Hole' of Rare Immune System Disorder 

"If I can help one other kid get treatment early, then it's worth it."

Xander, 9, of McCall, has loved snowboarding and skiing since he was 2 years old, but his ability to enjoy them changed abruptly in December 2014, when he began suffering from tics, or spasms, accompanied by anxiety, mood swings, learning regression and night terrors.

The disorder, called Pediatric Acute-onset Neuropsychiatric Syndrome, causes the immune system to attack the brain in response to various underlying infections like strep, Lyme disease and staph.

An eye-rolling tic rendered Xander blind at times, leaving him in fear of riding chairlifts and unable to participate in the sport he had loved for most of his life.

"It was just so sudden and was robbing my child of his passions," said Jennifer Whiteman, Xander's mother.

With the worst behind them—Xander's health has consistently improved with proper treatment—Whiteman felt compelled to help other parents and children struggling with the syndrome.

"If I can help one other kid get treatment early, then it's worth it," she said.

Whiteman recently partnered with the Oregon-based Northwest PANDAS/PANS Network to send out more than 1,000 educational pamphlets to pediatricians and doctors across Idaho. She also serves as the Idaho representative for the organization, and said she knows of at least two other children in the state battling the disorder, though she is sure there are many others who have been misdiagnosed or are still searching for a diagnosis.

click to enlarge Xander is now well enough to ride the lift and snowboard at Tamarack. - DREW DODSON
  • Drew Dodson
  • Xander is now well enough to ride the lift and snowboard at Tamarack.

"It's a dark, lonely hole because people see these behavioral aspects and they think 'Oh, you're just not disciplining him enough,'" Whiteman said. "You question yourself as a parent."

She added that sometimes Xander's symptoms diminished, but at other times they were so extreme that he couldn't leave the house and was highly sensitive to any light or noise.

Several doctors told Whiteman it was just a "phase" or a "tic disorder" with no available treatment. Then, Dr. Brandi Solace, a McCall-based natural medicine provider, suggested the symptoms fit the description of the rare autoimmune disorder.

It took about two years for Xander to be diagnosed and receive proper treatment. The longer the disorder is left untreated, the more severe it gets and the likelihood of putting it into remission decreases, according to specialists.

"We fought for it," Whiteman said of the diagnosis, which required visits to Washington, D.C.; and California. "The treatment is just antibiotics and ibuprofen. I mean, come on, this isn't some crazy experimental drug."

Eradicating infections with antibiotics, combating brain inflammation with ibuprofen and practicing good hygiene to help prevent new infections have enabled Xander to get back to his childhood.

He resumed snowboarding in February 2017 and developed a passion for dog sledding after attending the McCall Ultra Challenge that same year.

Xander also discovered a love for acting through a class held at the McCall Public Library and went on to play a prominent role in a production of The Night Kitchen, Whiteman said.

Like any other 9-year-old, he enjoys spending time with his friends, playing video games, riding his bicycle, reading and playing with his two dogs, Twister and Cody.

Although there is no known cure for PANS, Whitman said knowing what they are up against has made a night-and-day difference in fighting it.

"There's always concern that there could be a flare, but now we know what it is," she said.

This story first appeared in the McCall Star-News.

Pin It


Comments are closed.

More by Drew Dodson

© 2019 Boise Weekly

Website powered by Foundation