- Associated Press - Wednesday, March 5, 2014

WALNUT, Ill. (AP) - Jaclyn and Thomas Trujillo’s daughter, Kloey, loved school, playing with other children, and participating in a variety of activities. Then, for no apparent reason, everything in the extremely intelligent 5-year-old’s once-safe world suddenly changed.

“Last year around Halloween, we noticed she had problems with any changes in her routine,” Jaclyn, 28, said. “When she didn’t want to go to a Halloween party, I started to sense something was wrong.”

The normally sociable little girl went to the party, but gripped her mother’s hand the entire time. The unusual behaviors and the Walnut family’s struggles were just beginning.

Kloey dropped out of dance. She woke up screaming because she didn’t want to go on an outing with her Scouts troop,” Jaclyn said. “She would become terrified over any small changes.”

Then Kloey started exhibiting severe obsessive-compulsive disorder traits. Getting her dressed became a nightmare.

“She couldn’t stand the way her pants touched her ankles, the way her shoes fit her, or the presence of a line on her shirt - she would have a total meltdown over everything,” Jaclyn said.

For a month straight, the only thing she would wear was a dance leotard - and it had to be black. Jaclyn washed the same leotard and pair of capri pants every night and was forced to send her daughter to school in ballet shoes.

Communication became difficult amid some of the autism-like behaviors, and sometimes drawing pictures became the only option.

Seeking help

The family visited a doctor shortly after the wide-ranging and inexplicable symptoms started. The pediatrician attributed Kloey’s behaviors to “heightened sensitivity issues” and after occupational therapy evaluations, the Trujillos were told Kloey could be on the spectrum for autism or sensory processing disorder.

Kloey kept withdrawing from others, struggled through school days - when she went - and removed her inhibitive clothing the minute she came home, taking comfort in a familiar blanket.

Frustrated by vague answers and more physical symptoms complicated by her daughter’s bladder reflux problems, Jaclyn started researching OCD in children, and almost by accident, she stumbled upon something that finally seemed to connect all the dots.

“I was reading a Parents magazine story about something called PANDAS,” she said, “and it finally explained everything we were going through, so I just kept researching it.”

In Hinsdale, the Trujillos found one of the few doctors nationwide who treats PANDAS.

“He was certain she had PANDAS,” Jaclyn said. “If I wouldn’t have done my own research and kept pushing, I still wouldn’t know what’s wrong with my daughter.”

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