Saving Vanessa, part 1: A mystery rash, a stroke and an epic rescue

Vanessa’s rash first appeared on her arms and legs when she 3 or 4 months old. It was red and bumpy and went away when she was sick with a virus, which happened often. Then it would come back. The dermatology team she saw at Boston Children’s Hospital was puzzled. “I was expecting they were going to think it was nothing, but they took it very seriously,” says Katherine Bell, one of Vanessa’s mothers. “They took a biopsy and very quickly realized they had no idea what it was.” Vanessa’s case was even featured at a regional dermatology conference where doctors take up mystery patients. “A hundred to 150 dermatologists just looked at her,” says Katherine. But no one could pinpoint a diagnosis. Vanessa was then hit with a series of viral infections, and the rash went away for good. But other problems surfaced: she became anemic and increasingly fatigued. A hematologist prescribed iron supplements, which didn’t work. “It got to the point where she was barely eating, was throwing up, wasn’t playing,” Katherine says. “She was clearly in pain. She was fading away, losing weight, wasn’t walking.” Finally, a vomiting episode worried Katherine and her wife, Nancy Mendoza, enough to bring Vanessa, who had just turned 2, to Boston Children’s Emergency Department (ED). She was admitted for testing, received a feeding tube and had a brain MRI, which was normal. The Rheumatology Program team was consulted, and she saw Dr. Pui Lee, a fellow in the Division ...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & Conditions Our Patients’ Stories Dr. Carolyn Rogers Dr. Pui Lee Dr. Robert Sundel Dr. Scellig Stone Dr. Todd Lyons stroke Source Type: news