I almost didn’t take my 7-year-old son, Luke, to the doctor right away when he experienced a sudden onset of excessive blinking. He had just started a new school and was having trouble adjusting so I figured the stress of trying to fit in was producing this psychological habit.
I had no idea at the time his tics were the result of a strep infection I never even knew he had. Thankfully, our pediatrician made the correct diagnosis and treatment began immediately. My son was one of the lucky ones.
Kristin Kutz’s daughter, Abigail, came home from her first day of third grade excited and eager to go back. “Best day ever!” she exclaimed. The next day — out of the blue — she cried uncontrollably, insisting she couldn’t go back to school even though she didn’t know why. This dramatic, uncharacteristic behavior kept up for weeks. A nurse eventually found strep in her system.
Extroverted and happy is how Tammy Dalsin described her 10-year-old daughter, Ella, until one November evening — just one week after completing antibiotic treatment for strep. That night — forever burned into Dalsin’s memory — is when Ella abruptly developed strange, obsessive compulsive disorder- or OCD-like behavior, resulting in a four-month nightmare of frustrating doctor visits until finally receiving a diagnosis of PANDAS.
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. PANDAS occurs when a strep infection sets off a misdirected immune response in the child’s brain. Instead of fighting the infection, the immune system attacks the basal ganglia — a part of the brain that controls emotions and movement. This can result in extreme obsessive-compulsive characteristics, tics and other debilitating behavior.
“If it comes out of the blue and you’re struck by how odd it is, that’s a sign it may be PANDAS,” says Susan Swedo, chief of the Pediatrics & Developmental Neuropsychiatry Branch at the National Institute of Mental Health. Swedo and her team first identified PANDAS in 1998.
“Parents tell us PANDAS changes their child so dramatically it’s almost like their child is gone, and somebody else took her place,” Swedo says.
That’s exactly how Dalsin felt in 2011 when Ella all of a sudden couldn’t get herself to walk through a doorway.
“We were going from the garage into the house, and she kept going up and down the steps. She couldn’t make herself go in. She grabbed her hair with both hands and was screaming and crying. She was panicking because she didn’t know what was happening to her,” Dalsin said.
Ella’s symptoms got progressively worse. Her mind reeled with obsessive-compulsive thoughts, such as needing to touch the wall 10 times, otherwise something bad would happen. Ella was wrought with anxiety and could barely function. She missed weeks of school and had to quit hockey — a sport she loved to play. A visit to the pediatrician provided no answers. It wasn’t until the Dalsins did their own extensive Internet research that they discovered a probable cause.
“We read the PANDAS description, and it sounded exactly like her. We were convinced,” Tammy Dalsin said.
Unfortunately, PANDAS isn’t easily diagnosed.
“It’s harder to recognize,” says Kiki Chang, director of PANS Psychiatry Research at Stanford University Medical Center, “because mild cases get missed and some of the major cases, too, because they get misdiagnosed as primary psychiatric illness.”
Many doctors are still unfamiliar with PANDAS, a relatively new disorder. Others refuse to believe it even exists, not accepting that an infection could be the cause of a behavioral disorder.
That explains the Dalsins’ hellish few months of unproductive doctor visits, including to a neurologist, psychologist and psychiatrist, before a different child psychiatrist confirmed their suspicion of PANDAS. Finally, Ella could start her long road to recovery.
Nine-year-old Abigail’s PANDAS also went undiagnosed by the first physician she saw — a psychiatrist. After the initial visit, he was ready to refer Abigail to a special school for children with severe mental disorders. Abigail’s parents sought a second opinion. This time a registered nurse ran blood tests and found strep in Abigail’s body, recognizing PANDAS was probably the cause of her abrupt onset of crying outbursts and refusal to go to school.
Abigail did return to school more than a month later, but she often ran out of the classroom to hide — one time hiding in a school kitchen cupboard where no one could find her for hours. Abigail’s handwriting skills decreased dramatically, and she started refusing to eat — two common PANDAS symptoms.
Experts say PANDAS affects 1 in 200 children and is “definitely present in every elementary school in the country,” Swedo said. She says it may go unnoticed, though, because children often try to hide their symptoms.
While not every child who gets strep develops PANDAS, family history of autoimmune illnesses and anxiety increase the risk.
PANDAS treatment consists of antibiotics to fight the infection along with cognitive behavioral therapy and/or antidepressants. The longer the child goes with untreated PANDAS, however, the more serious the symptoms and more intense treatment is needed.
“We’re working with Departments of Health in several states to increase awareness by both parents and clinicians. If we can help pediatricians recognize and treat PANDAS in its early stages, it can make a huge difference in that child’s life,” Swedo says.
Take it from me. My son was in the pediatrician’s office no more than 10 minutes when the term PANDAS was mentioned. The immediate antibiotics and simple behavioral therapy were just a blip in the road for my son — who now at age 13 barely remembers the experience.
It’s a very different story for Ella and Abigail, whose PANDAS was not caught until much later. After months of intense therapy, Ella was put on long-term antibiotics and continues to take antidepressants six years later. Diagnosed in October 2016, Abigail still suffers relapses and continues working with health professionals to completely eradicate her symptoms. Her outbursts have decreased, and she’s beginning to eat normally.
Every little bit of progress brings hope to her family that there is life after PANDAS.
Deanne Haines is a freelance writer and mother of three from Wisconsin.
A highly respected LLMD here in Wisconsin has found that 80% of his PANS kids also have Lyme/MSIDS (borrelia and other coinfections). There’s much that is still unknown about this life-changing illness but tick borne illness (TBI’s) can definitely cause or exacerbate PANDAS/PANS.
The take home: do your own research, ask questions, and don’t allow egotistical medical professionals to patronize you by telling you that you or your child are making it all up. Call them to the carpet. If they refuse to help, go elsewhere, to someone who will listen to you and believe you.