What Should You Expect Your Doctor to Do?

If a child has urinary symptoms, Dr. Swedo recommends urinalysis and urine culture. She recommends a throat culture to look for strep, and an exam to see if an occult, or hidden, strep infection is observable.

If the rapid strep test is positive, she recommends a three-week course of antibiotics, to aggressively treat a possible sinus infection. Sinusitis is the trigger of symptoms for many kids, she says.

And Dr. Swedo also recommends that the pediatrician schedule a follow-up visit for three days later, to check in with the family. “The family stress is through the roof with this syndrome — by some measures higher than kids who’ve been diagnosed with leukemia,” she notes. “So a physician treating the medical causes should also make a referral, immediately, to a psychologist or psychiatrist—whatever is available in your area.”

Many children respond within the first week of the antibiotic treatment. The longer the symptoms have been active before the child starts treatment, the longer the response may take. If the symptoms disappear, you finish the course of antibiotics and then practice what Dr. Swedo calls “watchful waiting.” Some kids, however, don’t respond to the antibiotic treatment alone. And many will have later episodes when symptoms recur, triggered by another infection.