PLANO — Nine-year-old Lillian Conner admits she's a neat freak. Her shoes are lined up perfectly. Everything in her room has a very specific place.
But the obsessive cleaning isn't her fault.
"It is the fault of PANDAS," said her mother, Deborah Conner.
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep.
In rare cases, the common strep bacteria that sickens thousands of children every year prompts an immune response that attacks part of the brain, the basal ganglia.
"That's the area of the brain where we have a lot of our emotions," explained Plano pediatrician Dr. Charles Goebel, who has diagnosed several PANDAS cases in recent years. "The increased antibody response just starts causing a lot of these symptoms."
Symptoms of PANDAS include:
- abrupt behavior changes, including obsessive compulsive disorder (OCD)
- motor or verbal tics
- ADHD symptoms
- mood changes
- separation anxiety
- joint pains
- sleep disturbances
Lillian went to bed one night feeling normal.
"She woke up full of fears, OCD fears," her mom recalled. "'What if something gets into my nose? What if something gets into my eyes? What's going to happen? Will I stop breathing?' She also was afraid her food was poisoned, even if it was something that I had prepared. She was afraid to eat it, so she pretty much stopped eating — behavior that was completely abnormal for her."
Deborah Conner is hoping to generate awareness and fund the limited research on PANDAS. She's hoping to win a grant for an Oklahoma researcher by generating votes online.
Most children diagnosed with strep will not develop PANDAS, but experts say if your child suddenly starts exhibiting behavioral problems, tics or obsessive behaviors, you should consult your pediatrician right away.
Some doctors suspect that some children diagnosed with ADHD or OCD might have PANDAS. Many pediatricians do not know about the disorder.
"A lot of pediatricians don't diagnose it," Conner said. "There are some who don't believe in it. And for a parent with a child with this illness to hear that someone doesn't believe in the illness, it's very difficult. Because when you see your child change overnight, you become a firm believer."
Making a quick link to strep is key.
Lillian was diagnosed within two weeks. Antibiotics put her in remission, though she still has flare-ups of obsessive behavior.
She recognizes when symptoms are returning.
"I know," Lillian said, "but you kind of just want to do it and you kind of can't stop yourself that easily."
Now that they all know, she — and her family — are learning to embrace her need for clean.