The 9-year-old son of Fatema Nekooie, MD, suddenly threw up on a weekend night in mid-June. Nekooie guessed she was up against a gastrointestinal virus and a sleepless night ― maybe two. A colleague in pediatrics affirmed her suspicions.
But Kiarash’s nausea, vomiting, and abdominal pain were only the first in a series of unexplained symptoms that spurred an intense and ongoing medical investigation. Nekooei, a cardiologist in Bushehr, Iran, combined her roles as mother and physician and used every resource and connection she had.
Nekooei and 9-year-old Kiarash.
Kiarash’s initial symptoms resolved after 5 days. But a few days after that, Nekooei noticed swelling and erythema of her son’s genitals while she was bathing him. On the way to the emergency department, she called a urologist, who ordered labs and an ultrasound of the genital region. The sonography came back normal, but Kiarash’s white blood cell (WBC) count was up to 21,000/μL, nearly double what it had been when he was tested just days earlier.
A repeat sonography the next morning showed a small increase in blood flow to the right epididim. The doctor ordered a course of antibiotics, and on the second day, the swelling disappeared. All the physicians who examined him at the hospital believed the swelling must have been in response to a virus. After 2 days, they sent Kiarash home and told Nekooei to follow up in a month. “His doctors told me that we should be patient,” Nekooei told Medscape.
Her son’s abdominal pain came back in mid-July, accompanied by skin lesions along his cheek, chin, and neck. Nekooei ordered labs. His WBC count had skyrocketed to 37,000/μL, with 55% eosinophils.
Looking for help, she posted a description of her son’s evolving symptoms and lab test results on Medscape Consult, a social media platform where doctors share cases and advice on patient care. Her post quickly gained more than 100 responses and a global following. “All your advices [sic] will be useful for better management,” she wrote. She left her telephone and WhatsApp numbers for direct contact.
“It’s Very Difficult to Be in This Position”
Her son’s mysterious symptoms brought up painful memories for Nekooei. A few years earlier, her husband had suffered from an unclear illness. He had an abdominal mass, his platelet count was decreased, and he bruised easily. There were any number of possible diagnoses. “Many tests could not be done in Iran,” Nekooei said. His physicians were unable to determine the cause of his symptoms, and he came close to dying.
Her husband recovered after a splenectomy, but the near loss and painful memory of her own limitations still cause Nekooei grief. She cried when retelling the story. “It’s very difficult to be in this position,” Nekooei told Medsape, one where her medical training and resources aren’t enough. Watching her son’s symptoms this summer, once again, her medical expertise felt wildly insufficient.
Her son’s high WBC counts immediately made her think about malignancies. Nekooei called hematologist and oncologist Nader Shakibazad,