Illinois family struggles with rare disorder

WALNUT — 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.”

Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections, or PANDAS, is a rare disease. It usually occurs in young children from a strep infection that is thought to trigger OCD, tic, and other neuropsychiatric disorders. It isn't caused by the infection directly, but by the body's response to strep.

PANDAS experts, of which there are few, believe it is an autoimmune disease that continually interferes with the basal ganglia, the part of the brain that controls movement and behavior. Without treatment, physical and emotion symptoms get progressively worse. Many researchers compare it to another autoimmune disorder, rheumatic fever.

Support for families

Unawareness of PANDAS, and the emotional and financial roller coaster that is the disease, puts tremendous strain on families. That's why Wendy Nawara of Naperville started the PANDAS/PITAND/PANS Advocacy and Support group, the only official organization of its kind in Illinois.

Although members are spread out geographically, daily support is available through a Facebook page. She also puts together periodic face-to-face meetings and encourages parents to branch off into smaller groups.

“They call it a rare disease, but it really isn't,” Nawara said. “I think we will see a lot more of it when awareness is increased and we get better at diagnosing it.”

Nawara knows all too well the toll PANDAS takes on families. She has three children who have been treated by the same Hinsdale doctor. She said the doubt about the disease that lingers in the medical community increases the stress.

“These symptoms are downright scary,” Nawara said. “Many of these kids are being misdiagnosed, and parents are having to do so much research.

“You want to be a good patient and do what the doctor says, but there comes a time when doctors need to start listening to parents.”

Nawara, like many PANDAS parents, also had to deal with dismissive attitudes from many doctors along the way.

“My first doctor said it was sensory sensitivity,” Nawara said. “That doctor told me, 'She'll outgrow it; you need to be firmer and set better limits.' Families are dejected by doctors, schools, and many have lost contact with their friends.”

The group started with two members, and now has nearly 200. She is now approving two to 10 new families a week on Facebook. Nawara now sees her struggles as a calling.

“I was a social worker and sibling of someone with multiple disabilities,” Nawara said. “I knew I wanted to work with families like this, and looking back, I think everything happened the way it was supposed to.”

Financial challenges

Thomas Trujillo, 35, is insured through his employer, Sterling Steel, but most treatments for the disease are not covered by the insurance industry at large. It is not officially recognized as a disease by the entities that guide the insurance companies.

“We have flex spending, too, and they don't even take that,” Jaclyn said. “PANDAS is not in the book of diagnosed diseases.”

The most promising treatment for severe cases of PANDAS is intravenous immunoglobulin treatment, or IVIG. Plasma from many individuals must be mixed and purified before it is administered to boost a compromised immune system. Each treatment costs about $10,000, and because it is considered experimental for PANDAS, is not covered by insurance.

The Trujillos hope Kloey will need only one plasma treatment. They are waiting until next fall to have it because doctors have seen better outcomes after age 6.