Your 5-year-old comes home from kindergarten with a sore throat. You hurry to the pediatrician, receive a diagnosis of strep, and pick up an antibiotic at the drug store. Your son should be better in no time.
The sore throat disappears. But a few days later, your son starts acting strangely. He is anxious. He won’t eat. He shows signs of obsessive compulsive disorder, afraid to walk in certain places or get dirt on his hands. He’s developed a facial tic. The changes are terrifying, to you and to him.
The illness I’m describing is called PANDAS. Many people, including doctors, have never heard of it. Its tongue-tying full name is Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
PANDAS happens when a strep infection triggers an immune response in the brain. For reasons we don’t understand, the immune response goes haywire and the brain becomes inflamed. Common symptoms along with anxiety are sensory sensitivities, a decline in math and handwriting abilities, and personality changes. A child who is sweet and caring turns angry and agitated overnight, and stays that way.
Children with PANDAS often have sleep problems. They can regress in their development. School-age children well past potty training, for example, may begin to have accidents.
PANDAS is often mentioned in the same sentence with PANS, or Pediatric Acute-onset Neuropsychiatric Syndrome. PANS occurs when a trigger other than strep causes inflammation in the base of the brain, in a section known as the basal ganglia. The trigger might be an infection or environmental factors. While the full causes aren’t known, the results are similar to PANDAS. (PANS is the broad term for these illnesses, and PANDAS is a subset of PANS.)
PANDAS and PANS affect as many as 1 in 200 children, according to the non-profit PANDAS Network. Patients are typically 4 to 7 years old when the conditions first strike. Many children are misdiagnosed at first.
The illnesses are controversial. Some doctors don’t believe they exist. When I first heard about these mysterious ailments, I was skeptical, too.
But I researched the suspected ties between infections and some psychological conditions. Later I agreed to see one young patient with unusual symptoms whose family was desperate. Not only did I diagnose PANDAS in that child, I saw similar symptoms develop in her siblings. Some researchers believe genes might play a role in the illnesses.
Today, I treat PANDAS and PANS patients from many states, and my medical practice runs a free support group, open to all interested families regardless of where your child is treated. The Wall Street Journal and other respected media outlets have begun reporting on PANDAS and PANS (See recent articles here and here.) There are also centers popping up in academic institutions to study and research these illnesses.
Although there is no cure for this set of diseases, both can be treated. Treatment requires a team approach, including cognitive behavioral therapy. Some patients respond to anti-inflammatory medications such as ibuprofen. Others respond to antibiotics, steroids, or both. More extreme cases might require a transfusion of antibodies from donors, or a treatment called plasmapheresis, in which the blood plasma is cleared of antibodies that attack the immune system.
My most important message to parents is this: Children with PANDAS and PANS can go on to lead normal lives when diagnosed and treated early.
One of my patients violently attacked others when I first met her several years ago. This spring, she called to thank me for her treatment. “How are things going?” I asked, surprised and touched to hear from her.
She had called on a joyful day. It was the day of her high school graduation.
O’Connor leads Asthma Allergy Immunology Relief of Charlotte, and is board-certified in both allergy/immunology and internal medicine. Reach her at info@aairofcharlotte.com. Learn more about PANDAS and PANS from the PANDAS Network .