Greg – United States

The name of the child in this story has been changed to protect confidentiality.

Greg was diagnosed with TB meningitis in April 2011 in El Paso, Texas. Greg was put on a standard four-drug regimen consisting of rifampicin, isoniazid, pyrazinamide, and ethambutol. After conducting a contact investigation, Greg’s doctors discovered that his father had undiagnosed pulmonary TB. DST further revealed that Greg’s father had MDRTB. Greg’s father, originally from Vietnam, knew that he had tested positive with tuberculin skin tests in the past, but never received any diagnosis or treatment for active TB. Greg’s father had been working in a nail salon at a large mall in El Paso; it is unknown if others were infected.

Following the contact investigation in May 2011, Greg was diagnosed with MDR-TB. DST revealed Greg’s strain of TB was resistant to isoniazid, rifampicin, and ethambutol, three of the four drugs he was being treated with, as well as to streptomycin. He was admitted to the hospital and started on second-line TB therapy consisting of amikacin, levofloxacin, cycloserine, and pyrazinamide.

Greg remained in isolation for the first six weeks of treatment. His mother felt an overbearing sense of loneliness and depression while her one-year-old son was in isolation at the hospital for six weeks. While tending to Greg at the hospital she was separated from her daughter, adding to her depression. Toward the end of the six weeks of isolation, Greg’s health had improved, and his mother struggled to cope with his increased energy and activity in such a small space. Greg was doing well on treatment, but after several months, he began to experience hearing loss, likely an effect of treatment with amikacin. Greg’s doctors replaced amikacin with linezolid. Greg has now completed 21 months of therapy and is doing well. Unfortunately, Greg still has to wear hearing aids. Thankfully, he appears to be catching up to where he should be developmentally.

As Greg’s mother reflects on his treatment experience, she tells stories of the difficulties she faced getting him to take pills designed for adults. Greg’s doctor expressed his admiration for parents who are able to get their children through TB therapy: “In many ways, it is more difficult that cancer chemotherapy because, even with DOT [direct observation of therapy by staff], the onus is on the parents to administer all of the medication.” Greg’s mother also struggled to work with the local health department, where over the course of Greg’s treatment, there was regular turnover of staff. Greg’s mother felt she knew more about TB and TB treatment than the health department workers did. Greg’s mother faced stigma and described subtle discrimination by the community, which added to her sense of isolation. Unfortunately, Greg’s parents divorced during his treatment. There is no doubt that the stress TB placed on Greg’s family contributed to the demise of his parents’ relationship.

Story Collected by: Jeffrey R. Starke, MD, Baylor College of Medicine, Texas Children’s Hospital, United States of America