Eight-year-old Holland Barr was a healthy and happy child, until the morning she woke up with severe anxiety, the beginning of a chronic condition that included phobias, tics and migraines.
“She was afraid to eat and afraid to go to school,” her mother, Karen Blandini, recalled.
After two years of doctor visits and searching for answers, she was diagnosed with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS). Holland’s frightened parents brought her to Banner Children’s at Diamond Children’s Medical Center, the pediatric medical center connected with the University of Arizona College of Medicine in Tucson.
There she was seen by a team of physicians, including Sydney Rice, MD, UA associate professor of pediatrics and division chief of genetics and developmental pediatrics at the UA Steele Children’s Research Center and Banner – University Medical Center Tucson.
“When we first saw her, she was anxious and fragile due to her fear of eating,” Dr. Rice said. “She wore sunglasses because she did not tolerate the light. The first time I saw her, she hid under a chair.
“A few weeks after she received I.V. immunoglobulin, Holland came in without her dark glasses, hugged me and showed me her new doll that looked just like Holland.”
The word “cure” may be a stretch. But as far as Karen Blandini is concerned, “They gave us our daughter back.”
Dr. Rice knew she wanted to specialize in developmental pediatrics almost as soon as she graduated from the UA College of Medicine – Tucson in 1991. During her pediatric residency training, she worked with several physicians who specialized in the care of many children with complex medical needs in the pediatric clinic at UMC, and she was inspired by their work.
“I enjoyed having to think about many different medical issues at the same time. I like the challenge of having to balance the treatment of children and their families. There are no easy lists to follow for these children. I work in the world of ‘gray,’ and I fell in love with caring for very complex children and families.
“I learned from my teachers and mentors how to sit, listen and be patient. I am so grateful for the opportunity to learn from them.”
After her pediatric residency training, she worked as a general pediatrician at Mariposa Community Health Center in Nogales, Ariz. Her patients included children diagnosed with autism, cerebral palsy, muscular dystrophy as well as typically developing children. One day per week, she had the flexibility to complete paperwork, but she also used that day to visit the schools and homes of children who were struggling to assess their medical complexity from all angles.
She returned to Tucson to work in the nascent Primary Care Clinic at Children’s Clinics for Rehabilitative services to work only with children who had complex medical needs.
“That meant I was working with really complicated kids, kids with wheelchairs and ventilators and shunts,” she said, “and I just loved it. I think it was the opportunity to make a difference in the lives of these children and their families.
After a few years working at Children’s Clinics, Dr. Rice decided that “I didn’t know enough.” She went to the University of Virginia and completed a fellowship in Developmental Pediatrics, a master’s degree in Health Evaluation Sciences and participated in brain injury research funded by the NIH. Clinically, she saw children with spina bifida, traumatic brain injury, autism, cerebral palsy, and other disabilities. She stayed at the University of Virginia for several years on the faculty at UVA and loved her work, but she and her husband missed family who lived in Arizona and California.
Dr. Rice and her husband had two children in Virginia and wanted their children to know their grandparents who live in Yuma and the San Francisco Bay Area. They returned to Tucson, where she joined the UA Department of Pediatrics. Pediatrics department head Fayez K. Ghishan, MD, said to her, “‘We don’t have one of you. What do you want to do, and what do you need?’ That was an amazing gift that he gave me.”
That was in 2005. Today, as developmental pediatrics division chief, Dr. Rice works within a large clinical and research program that she helped put together. It includes the Children’s Postinfectious Autoimmune Encephalopathy (CPAE) Center of Excellence at the UA Steele Children’s Research Center. The only center of its kind in the nation, it brings together clinical care, teaching, translational medicine and basic science research to tackle a spectrum of neuropsychiatric disorders that historically have been misdiagnosed or under-diagnosed in children.
“I don’t think I’ve ever cured anybody,” Dr. Rice said recently. “My job has been trying to find ways to make lives better. I just saw a young man who is 15 years old and he has autism. He doesn’t speak, but communicates very well in other ways. I met him 10 years ago. Initially, when I met the family, his parents just wanted the autism to go away. Over these last 10 years they have gotten to a place where they have a wonderful life. They love their son. He’s not cured, but we’ve made some things better and they’re happy as a family.”
Holland Barr, who sees Dr. Rice for follow-up at the CPAE Center, is another success story. PANS is an autoimmune encephalopathy that nothing seemed to help.
“We have a graded intervention regimen with antibiotics, and anti-inflammatories like ibuprofen initially, then oral steroids, and then IV steroids, and if they’re still not getting better, we give them IVIG,” Dr. Rice said.
And for Holland, it worked.
Fortunately, not all PANS cases are as difficult to treat as Holland’s was. “We’ve had a couple of kids who got better with just ibuprofen,” Dr. Rice said. “It’s incredible.”
“We are on the cusp of cures,” she said. “Last year, researchers came out with an infusion that looks like it can cure a form of muscular dystrophy. “Conditions that we never thought could be treated, will soon be treated. There’s so much out there that we don’t know about yet and that makes my world exciting.”