MOORE, Okla. — Every parent knows the symptoms of strep throat in children: fever, soreness, fatigue.
But, doctors are now warning about a rare disease caused by strep infections, which can lead to obsessive compulsive disorder (OCD).
These children have a bizarre and devastating disease missed by most doctors.
They are often labeled mentally ill, autistic or bipolar with unusual fits of rage and paranoia.
“They could be four to five hours screaming rages on the floor kicking and screaming,” said Amber Harper, whose seven-year-old daughter Grace suffers from this disease. “I’ve carried her out of restaurants kicking and screaming.”
For two years, the Harpers tried to unlock the mystery of Grace’s uncharacteristic behavior.
They were in and out of the hospital with more than a dozen different doctors and specialists trying to figure out why their articulate, creative child morphed into a raging time bomb virtually overnight.
“She hit the doctor once,” remembers Harper. “She was totally blowing up. She was out of control.”
It started with recurrent fevers.
Grace would have a high fever every 28 days, and with each fever, her parents noticed something else. Grace developed obsessive compulsive behaviors.
For example, everything had to be in its exact spot, like crayons and shoes and toys, or little Grace would come unglued.
“I organize them because when they aren’t organized, I get upset,” said Grace Harper.
“Organizing” is her way of describing a rare form of psychiatric illness she caught during those repeated strep infections.
Doctors believe the strep bacteria triggers an abnormal immune reaction; proteins attack the area of the brain that controls behavior.
This enigmatic disease now known as PANDAS, short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep.
Dr. Amy Darter is the Medical Director at the Oklahoma Institute of Allergy, Asthma, Immunology, and an expert in the disease, PANDAS.
Research is still emerging because for years, doctors had no idea what was going on with these kids.
“These parents get so frustrated. They’re like, ‘Where’d my child go?’,” said Dr. Darter. “An average, normal, everyday infection that humans are exposed to, in some people who are prone, can trigger this sort of response. You see a normal child. Then, an infection. And then you see a child you don’t recognize as your own anymore. It hits that quickly, and it can be very profound.”
PANDAS can cause paranoia and debilitating tics.
Kids who suffer from the disease can live tortured, paralyzed by their own withdrawal from normal life.
And the disease is a nightmare for the parents who have no idea what went wrong.
The documentary aims to raise awareness about this rare disease.
Dr. Darter hopes to do the same because there is good news for kids like Grace. There is treatment, and it can work.
“After you take care of this abnormal immune response, you can get these kids back,” Dr. Darter said.
Since strep is the cause old-fashioned antibiotics are often the fix.
For some patients, doctors also prescribe a blood plasma exchange therapy.
Tormented children can come back.
“We finally have an answer,” said Amber Harper. “There’s a road to recovery. We finally have a path. It’s a long road. It’s not an easy road. But we have an answer. We have a plan and we can walk that road.”
A few months ago, Grace’s parents were sure she would have to repeat the first grade.
But after a year on a sophisticated cocktail of antibiotics, Grace is reading at grade level and excited about second grade next year.
PANDAS is just beginning to be recognized by physicians around the country and in Oklahoma.
If your child has had a strep infection followed by dramatic changes in their behavior, you should ask your doctor about PANDAS.
Seek out a physician who specializes in this disease.
Dr. Amy Darter is an immunologist who specializes in PANDAS and a similar condition calls PANS.
Dr. Darter practices at Oklahoma Institute of Allergy, Asthma and Immunology at multiple offices around the Oklahoma City area.
Moleculera Labs is an Oklahoma City based research lab doing cutting edge research on PANDAS and PANS.
Check out the PANDAS Network to learn more about this disease.