It all started with a scratch.
"Mommy," our precocious 7-year-old daughter mumbled, afraid to make eye contact. "I think I scratched the floor."
"Where?" my wife asked, surprised that she would fret about our well-worn wood floors.
Sarah pointed to a corner of her room at a "scratch" that we couldn't see, but that was clearly distressing this normally confident, happy child. As I put her to bed that night and kissed her forehead, she looked at me with what seemed like a plea for help.
Things didn't get better. She became nervous about everyday things that never used to bother her. She worried about her two younger sisters' health, about being late for school, about a book that she may have put in the "wrong place" on her bookshelf, which had never been all that organized. She was constantly moving, as well, which was unusual for her.
As a physician, my first instinct was to rule out the worst potential diagnoses.
Brain tumors can present with subtle behavior changes. She wasn't having any other symptoms such as vomiting or clumsiness, but this was what I feared most. Behavior changes can also be a hallmark of autoimmune diseases such as lupus, but also typical in such cases are rashes, cold sores and aching joints and muscles, none of which she had.
I even thought of a rare condition such as acute disseminated encephalomyelitis (ADEM), in which the body attacks areas of the brain after fighting off an infection. This can also come with sudden behavioral changes, but it usually progresses rapidly with consciousness and muscle problems, neither of which she had.
Her pediatrician did a thorough physical and found nothing wrong.
Age 7 is a classic time for the onset of anxiety disorders, and we thought she might be vulnerable as a very conscientious big sister. So we began weekly appointments with a child psychologist, including play therapy, sand therapy, and talk therapy.
We got great insight into anxiety and OCD disorders in this age group, but our daughter was still worrying constantly. After several weeks of therapy, I suggested a diagnosis and a potential treatment to her therapist that we all agreed on.
Physicians love acronyms, and this one seems appropriate for pediatrics: PANDAS, which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptoccal Infections.
In March 1995, Susan Swedo and her colleagues from the National Institute of Mental Health published an article about a "new, infection-triggered, autoimmune subtype of pediatric OCD and Tourette's syndrome."
A few years later, they described 50 similar cases of what was now known as PANDAS and created the Swedo criteria for this disorder, which includes OCD and/or tics, usually complex in nature; age between 3 and puberty; acute onset; association with Group A streptococcal infection; and an association with strange bodily movements, all positive for our first-born daughter, 13 years ago.
There is a wide range of symptoms and prognoses for those diagnosed with PANDAS. Some children, such as our daughter, might just have one episode. Some have a relapsing-remitting pattern with "explosions" of symptoms, especially tics. Some children have debilitating symptoms of OCD, tics and movement disorders and should be followed closely by a PANDAS specialist, such as a pediatric neurologist familiar with this disorder.
Treatment is to attack the strep infection with antibiotics. Other treatments depend on persistent symptoms that do not go away with antibiotic treatment.
Our daughter's throat culture came back positive for strep, and a blood test for strep infection was also positive.
After a 10-day course of antibiotics, her symptoms did not recur.
Every now and then, when I stepped into my daughter's room, I would peer down at the hardwood floor to try to see which scratch started our frightful journey, thankful to have our child back to her normal self.