By Julia Prodis Sulek
BURLINGAME -- Nearly 200 parents of children with a complicated, mysterious brain illness called PANS gathered over the weekend to seek advice and support from each other as they navigate the disease, which triggers psychotic and compulsive behaviors.
The sold-out symposium came a week after this newspaper profiled the nightmarish ordeal of 16-year-old Tessa Gallo, of San Jose, who in 2011 was misdiagnosed as having bipolar disorder. She spent nearly a year in and out of psych wards and group homes before doctors at Lucile Packard Children's Hospital diagnosed her with PANS -- pediatric acute-onset neuropsychiatric syndrome -- and began aggressive treatment that improved her health dramatically.
"I have my daughter back again," Tessa's mother, Teresa Gallo, told the crowd Saturday at the Embassy Suites in Burlingame. "My passion is to bring awareness to this disease."
PANS is believed to be caused by an infection or other trigger that causes the immune system to mistakenly attack the brain and swell it, resulting in extreme obsessive-compulsive disorder, cognitive regression, sleeplessness and other disabling behaviors.
Tessa's was a severe case. She didn't speak for nine months, drank water nonstop, became catatonic at times and often tried to escape from her house and hide in neighbors' bushes or leap out of the family car. She also went through a hitting streak, even pummeling her doctors.
A subset of the disease called PANDAS is believed to be triggered specifically by strep. If caught early enough, the disease can be cured by a common antibiotic. (PANDAS stands for pediatric autoimmune neuropsychiatric disorder associated with strep.)
But a diagnosis of PANS is so new and controversial that most pediatricians across the country haven't even heard of the afflictions, leaving many children locked in psych wards or wreaking havoc at home. A small group of critics suggest the disease doesn't exist and argue that any improvements children see might be caused by the placebo effect. At the very least, they say, more research is needed to prove that strep or other infections can cause what appears to be extreme forms of bipolar disorder.
But Dr. Susan Swedo from the National Institute of Mental Health, who has been studying the condition since the 1980s, and Dr. Jenny Frankovich, a rheumatologist at Lucile Packard at Stanford who treats Tessa, say the disease is very real. The PANS clinic at Stanford, which Frankovich recently opened with child psychiatrist Kiki Chang, needs funding for research, Frankovich said, and the clinic is seeking donors.
Both Swedo and Frankovich, at the forefront of PANS research and treatment, received standing ovations from the crowd.
"This is not a psychiatric problem. It's a medical problem," Frankovich told the crowd. When treated with steroids and other anti-inflammatories and immunosuppressants -- the same way patients with other autoimmune diseases like lupus are treated -- the children often improve.
But suppressing the immune system can be dangerous and leave the body vulnerable to fatal infections, Frankovich warned, and should be carefully considered.
Still, she said, "We need to take care of these children so they can live a normal life."
Parents from 16 states and four countries, including China and Scotland, made the pilgrimage to the conference, sponsored by the PANDAS Network, a parent support group.
"You're way ahead here," said Grant Timothy, who traveled with his wife, Gillian, from Scotland to learn more about the disease they believe their 8-year-old son is suffering from. "We went through 12 doctors. My wife and I long suspected he had to have an immune problem. The doctors refused even a simple blood test."
Last November, they flew to New York, where the boy tested positive for a multitude of infections that his parents believe caused his problems, including Tourette syndrome. But in the United Kingdom, Timothy said, no doctor will write a prescription for a prolonged dose of antibiotics.
"The U.K. just won't give it," he said. "It's now almost May, and there's been no treatment."
Many gathered at the weekend conference don't think awareness is much better in most of the United States.
Jim and Jill Kemp, of Eureka, said they've lived through two decades of misdiagnoses for their daughter, Amanda.
"After 20 years, everything we were told was wrong. They gave her 37 medications that weren't doing anything," Jim Kemp said.
"It's been a try and fail my whole life," said Amanda Kemp, 20, who attended the conference with her parents. "I have treatments now that will hopefully work. If they don't, I might as well give up."
Her mother is more optimistic.
"I feel elated here," Jill Kemp said. "There's hope, especially because people here put their necks out."
Contact Julia Prodis Sulek at 408-278-3409. Follow her at Twitter.com/juliasulek.
FOR MORE INFORMATION
To find out more about PANS, go to the parent support group website at http://pandasnetwork.org or the Lucile Packard Children's Hospital question-and-answer page at http://healthier.stanfordchildrens.org/q-sudden-symptoms-first-sign-pans-pandas, or call 650-497-9063.
To donate to the PANS clinic, go to http://give.supportlpch.org/goto/PANSclinic.