For two years the Korbmacher family rode an emotional roller coaster as their young son, Hans, struggled with a mental illness that left him almost unrecognizable. And for two years Heather and Arnold Korbmacher refused to back down as they pushed for a diagnosis and treatment that would bring him back.
The journey began in December 2013, when 10 year-old Hans was struck twice with severe fevers. Heather now looks back and recognizes this as the onset of his illness.
Shortly after his bouts with fever, Hans began showing symptoms of depression and anxiety and responded to things in ways he never had before. Screaming, banging his head and lashing out physically happened every couple of weeks at first, then weekly, then several times every day. Heather, or his younger brother Andre, were frequently his targets.
“He would actually feel these episodes coming on and beg me to make them stop, because he couldn’t take it anymore,” Heather says. “It was heartbreaking”
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At the time, Heather was the Behavior Specialist with the Bellingham School District.
Hans would be institutionalized now if he hadn’t been diagnosed and treated for PANDAS.
“Using my training, I tried to manage Hans for a while, but it quickly became clear that something was seriously wrong and we needed help,” she said.
By May 2014 Hans had stopped going to school or even leaving the house, and Heather had left her job to care for him. Local specialists failed to provide any answers, other than one who suggested Hans might be suffering from obsessive-compulsive disorder.
“I plugged that into the Internet and eventually found PANDASnetwork.org,” Heather says. “Hans had all the symptoms of PANDAS except one, and the fact that everything started after his fevers made me believe we had found his illness.”
PANDAS is Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It occurs when a strep infection triggers an immune response that includes inflammation in the brain’s basal ganglia. The affected child then suddenly displays symptoms like OCD, anxiety, tics, personality changes and sensory sensitivities.
PANDAS is a subset of a larger class of disorder known as PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). The disorders only were identified in the late 1990’s and are still unfamiliar to many physicians.
1 in 200 Children are affected by PANDAS, according to the National Institute for Mental Health
PANDASnetwork.org also listed diagnostic tests, which the Korbmachers took to Hans’ Bellingham pediatrician, Dr. Jordana Hawkins.
Dr. Hawkins ran the tests and made the PANDAS diagnosis, but Stanford University’s Children’s Health clinic was the closest facility that treated it. It would be a nine-month wait to get into Stanford, so Dr. Hawkins consulted its physicians on a treatment plan. Step one was to fight the underlying infection with heavy doses of antibiotics, followed by several months of preventative doses.
“The antibiotics reduced the intensity of Hans’ behaviors, but to our disappointment he was still not well enough to leave the house,” Heather says.
In October 2014, while the family waited anxiously to get into the Stanford clinic, Heather discovered Vital Kids Medicine in Seattle, a naturopathic clinic experienced in PANDAS. They treated Hans with an intensive protocol of supplements and steroid bursts to reduce brain swelling. He showed some improvement, but was still not ready to return to school.
Hans visited Stanford, and the PANDAS diagnosis was confirmed in March 2015, but it would be another eight agonizing months before he could be treated.
“Our insurance didn’t recognize the illness, so I was back and forth with them the entire time,” Heather says. “Hans continued with the supplements and steroid bursts in the meantime, and our protocol at home became ‘Don’t trigger Hans.’ We were walking on eggshells.”
Parents who suspect their child might be affected need to demand the diagnostic testing, and don’t give up until you get it. Trust your intuition.
PeaceHealth finally treated Hans with Intravenous Immunoglobulin therapy (ivig) in November 2015, and “we had him back,” Heather says.
“He wasn’t 100 percent, but we could see the Hans we knew,” she said. “It was such an incredible relief.”
Hans was home schooled and studied online this year, and he plans to enter eight grade next fall. Heather says he still has some general anxiety, but the improvement has been remarkable.
“Hans would be institutionalized now if he hadn’t been diagnosed and treated for PANDAS,” Heather says. “Parents who suspect their child might be affected need to demand the diagnostic testing, and don’t give up until you get it. Trust your intuition.”
The National Institute for Mental Health (NIMH) estimates that PANDAS affects 1 in every 200 children, and that 25 percent of kids with mental illness are misdiagnosed. Heather Korbmacher advises families who suspect they have a child with the illness to visit PANDASNetwork.org for information. They are also welcome to communicate with her at firstname.lastname@example.org