DISORDERS IN CHILDREN
Young Brandon was always a happy, bright and content child, his parents say, so when he would get sick with a strep throat and fever three years in a row — always in February and always followed days later with distressingly unhappy behavior — his parents knew something was wrong.
“He could not be appeased,” his mom, Bonnie Markowitz of O’Hara, said recently, recalling the desperation she and her husband, Saul, felt while searching for treatments for Brandon, now 16. Courses of antibiotics seemed to reduce the behavior issues within four to six weeks, but not without missed school days and increasingly intense obsessive-compulsive behavior.
Brandon’s was a “classic” case of PANDAS, first noted almost 20 years ago and named with the acronym for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection. National Institute for Mental Health researcher Susan Swedo and her team reported in an April 2004 article in the journal Pediatrics that “a decade of observations and research” found the new type of pediatric OCD that is triggered by anti-bodies to group A strep bacteria.
Although most children with OCD gradually developed symptoms, the researchers reported, the subgroup of children had an “explosive ‘overnight’ onset of obsessions and compulsions followed by a relapsing-remitting symptom course.” The relapse of neuropsychiatric symptoms often came after strep throat or scarlet fever.
In July Dr. Swedo and other leading researchers published their treatment guidelines for PANDAS and PANS (a broader designation including all sudden cases of OCD) in a special issue of the Journal of Child and Adolescent Psychopharmacology. Treatment has three parts: psychiatric medications, antibiotics and anti-inflammatory and immunesystem therapies.
To raise awareness about the disorder, a free screening of a documentary about PANDAS/PANS, titled “My Kid is Not Crazy,” will be held at 7 p.m. Thursday at the
Jewish Community Center in Squirrel Hill. A pancake meal will be held beforehand and panel discussion afterward. To register, go to pancakesforpandas@gmail.com
Families and children’s doctors say the new guidelines and a better understanding of the disorder are sorely needed.
“This is definitely an evolving field,” said Abigail Schlesinger, clinical director of the behavioral science division at Children’s Hospital of Pittsburgh of UPMC. She noted that the new PANDAS recommendations support standard guidelines for treating infections, not using antibiotics any differently just because PANDAS is suspected.
In an email Dr. Schlesinger reviewed options for parents who suspect their child has PANDAS:
“The use of long-term antibiotics and/or antibiotics when infections are not clear should be reserved for patients with more severe presentations and should be done in conjunction with a specialist — preferably infectious disease and psychiatry,” she wrote. “In many patients with OCD, symptoms treatment of acute strep and initiation of treatment for the OCD — with behavioral therapy and/or an SSRI [antidepressant drug] will be sufficient.”
She said Children’s has an inpatient team that can collect all the necessary medical information to investigate neurologic conditions when the cause isn’t clear. Diagnosing PANDAS means ruling out other possible explanations.
A single opinion piece opposing the Swedo team findings in the same 2004 edition of Pediatrics led to widespread reluctance to try nonpsychiatric treatments, Dr. Swedo has said.
The NIMH team continued to pursue the idea that infection produces antibodies that then interact with neurons of the brain’s basal ganglia. In addition to OCD, symptoms include separation anxiety, anxiety attacks, irritability, extreme mood swings and temper tantrums. Other problems seen include immature behavior, hyperactivity, problems with attention and concentration, handwriting changes and problems with math, reading and other school subjects.
Brandon Markowitz has had all of the symptoms through the years, improving after he was given amoxicillin; but each time PANDAS returned, new symptoms would appear, his parents said.
“We saw anger and raging,” Ms. Markowitz said. “It was scary; he didn’t understand it and we didn’t understand it.” In fifth grade, she said, there were times she and her husband took turns restraining their son to calm him, sometimes for an hour or longer.
Brandon saw a neurologist after almost a year of severe symptoms. He was treated for Lyme disease and walking pneumonia. In 2014 he had a lab test known as the Cunningham Panel, to measure autoimmune antibodies associated with neuropsychiatric disorders. Brandon was then treated with intravenous immunoglobulin (IVIG). A second IVIG in 2015 didn’t help, his mom said.
No lab test is enough for a diagnosis, Dr. Schlesinger said.
She recommended parents concerned about PANDAS seek help for OCD and other behavioral problems with their pediatricians and said they can be referred to the OCD clinic and psychiatrists at Western Psychiatric Institute and Clinic and infectious disease experts at Children’s Hospital. Children’s is developing an educational series for pediatricians to inform them about PANDAS and behavioral health.
After a relapse of PANDAS symptoms in middle school, Brandon did schoolwork at home. Now he’s doing well with online classes. His mom said his symptoms are at last under control, although there is some lingering OCD and anxiety.
A PANDAS specialist who had treated Brandon with nutritional supplements and antibiotics was Allen T. Lewis in Columbus, Ohio. He had originally researched alternative treatments for his own son, now 18, who has autism.
“One thing we worked on wasbiochemistry of anxiety and hyperactivity,” Dr. Lewis said in a phone interview. He first saw PANDAS in a patient with autism in 2010. The mother described the sudden onset of symptoms, he said.
After testing positive for strep, the child was given antibiotics and three days later was 80 percent better, Dr. Lewis said.
“It was lucky that I had a patient I knew, a smart mom and a relatively new case of PANDAS. Since that time, it’s been patient after patient. I realized this was an autoimmune illness.”
There was no abrupt onset of symptoms for Donnie Woytowitz when he was a toddler, said his mom, Karen. An impulsive, hyperactive child, he went on to have sleep problems and separation anxiety in his school years in Florida. At 9, his mother said, “He said he was tired of life.” His mom and dad, Donald V. Woytowitz Jr., a hematologist and oncologist for UPMC, sought counseling and a psychological evaluation at that point.
Then came a string of diagnoses, including attention deficit disorder, anxiety and autism. From ages 13 to 18, different medications were tried, but not effective, his father said in a case report he compiled about his son.
At 19, Donnie was diagnosed with OCD. After he was evaluated for PANDAS, his dad wrote, they found that antibiotics, plasma exchange and IVIG would help with symptoms, along with clonazepam, a sedative. However, the young man also struggled periodically with substance abuse, often seeking drugs to ease chronic headaches, his dad wrote.
The heartbreak of the McCandless couple and their family moved from crisis to tragedy, when Donnie, at 21, died suddenly. He had completed a drug rehabilitation treatment, had a job, a girlfriend and signed up for classes at a community college. An autopsy revealed an enlarged heart and death was attributed to an accidental overdose of oxycodone and clonazepam.
“We think he had a different variant of PANDAS; his presentation was chronic intermittent infection in the brain,” Dr. Woytowitz said. “Our story fits very well with an autoimmune attack on the brain. Treatment improved that; the OCD improved.” However, he said, over many years, “it takes a toll on the brain” and help came too late.
“We did exactly what they said,” Karen Woytowitz said. “He’s not here anymore. Clearly something was missed.”
For more information, parents and doctors recommend the PANDAS Network www.pandasnetwork.org.