Parents of children with a complicated and often unknown brain disorder are fighting for a bill that's making its way through the state legislature.
Wisconsin Assembly Bill 638 would create an advisory board to educate the medical community about PANS (pediatric acute-onset neuropsychiatric syndrome), a disorder that often causes troubling behavioral issues in children, that health experts say doctors can misdiagnose.
Five years ago, Maja Cuellar says her son Adam started having behavioral issues at school and his teachers thought he had ADHD.
Over the next few years, his symptoms only got worse.
"He started becoming more aggressive," Maja said. "He was going from first or second grade threatening his friends that he was going to kill them. He would develop obsessions about ceiling fans or spiders or church bells."
Even his handwriting went from fairly legible to completely unreadable.
Maja says Adam's doctor was ready to prescribe an anti-psychotic medication. That's when Maja says she did research online and learned about PANS.
PANS develops after an infection, in most cases strep throat, goes untreated. Other common infections like MONO and ear infections can lead to PANS as well.
"Instead of their body reacting to it normally where their body makes antibodies to fight it, their body overcompensates and really over responds," said Dr. Barbara Hale-Richlen, who owns the Hale-Richlen Center for Psychiatry in Brookfield. "These antibodies instead of fighting off whatever is infecting them, it turns against their own body."
Hale-Richlen says the majority of her Brookfield practice is dedicated to this disorder now, but she's unique in Wisconsin.
"There really aren't a lot of people who specialize in that area," she said.
According to the National Institute of Mental Health, criteria for diagnosing PANS can include:
- Children who exhibit obsessive-compulsive behavior, oftentimes out of nowhere.
- The presence of other psychiatric symptoms at the same time like aggression, anxiety, tics.
- Mood changes such as irritability, sadness.
- Trouble sleeping, bed-wetting.
- Changes in motor skills (e.g. handwriting).
Hale-Richlen says in her work, she's also found that when children suddenly stop eating or drinking, in addition to other symptoms mentioned above, that can indicate PANS.
The treatment is oftentimes simply antibiotics. In many cases, Hale-Richlen says the children will need to be on antibiotics for an extended period of time.
Cuellar says within five days of being on antibiotics, Adam started to improve.
"The teachers at school were like who is this kid because the change was so big," she said.
After hearing similar stories from hundreds of families in Wisconsin, Rep. Janel Brandtjen (R) of Menomonee Falls says she wanted to get a bill passed that would help.
"It helps young people in the sense that by being diagnosed earlier, save the taxpayers dollars, saves families all the crisis, and certainly gives the children an opportunity to go forward with their lives," she said.
The exact prevalence of PANS is unknown, but some researchers suggest it could account for more than 10 percent of childhood-onset obsessive-compulsive disorder and tic disorders.
AB 638 passed the Assembly on Tuesday and now heads to the Senate.