If You Think Your Child Might Have PANS

Parents’ first stop when they experience such a dramatic behavior change is usually the pediatrician, or in extreme cases, the emergency room, Dr. Swedo notes. She recommends that you refrain from insisting to the doctor that your child has PANS, and bringing along articles on the disorder as backup, since medical professionals tend to be skeptical of a parental rush to diagnosis.

The best way to present this, she says, is: “I’m really worried about my child’s brain. There’s been an abrupt change in his behavior. This is what I’ve seen at home. It’s completely out of character.” The goal, as she puts it, is to partner with the doctor in terms of let’s figure it out together. PANS is one possible explanation for the sudden changes in behavior, but your physician will want to consider others as well.

In the past, pediatricians and other doctors have often dismissed families describing acute-onset OCD, Dr. Swedo said, assuming that parents must have missed earlier, less severe symptoms. But PANS and PANDAS should now be much more widely recognized.

It’s also good to check with your child’s teacher or school to see if strep has been going around. A child doesn’t have to have symptoms of strep to have an infection—some kids never get symptomatic.