Karen
My 3.5 years son was just diagnosed on March 5 by a doctor at Texas Children’s Hospital in Houston. I’ve only just started researching this myself but here’s our experience to date and what we’ve been told: He started with a red pinpoint rash on his hips and buttocks that didn’t itch or hurt. Over the course of a week, the rash progressed down his legs to his feet, with the spots getting darker red and larger. He also seemed to have lots of bruises up and down his legs. (Apparently the waist-down distribution of the rash is classic). He developed swollen feet, hands and lower back. His behavior was normal but he couldn’t walk! We took him to 3 doctors who all told us he had a “nonspecific rash” that would go away and they thought he was allergic to the penicillin he was on. But we knew it was more than that. When he complained about pain in his abdomen, we took him to Texas Children’s Hospital where he was diagnosed right away. As has been posted, we were told HSP has no cause or cure. The doctor said it’s very rare – they see maybe 2 cases a year. The rash was a result of seepage from blood vessels. Her primary concern was any internal swelling causing damage in the bowel or kidneys. So they took urine and fecal samples, gave him an xray and ultrasound (all were OK). During the ultrasound, the doctor told us that often, HSP cases would start with internal abdominal pain and that patients were only “saved” from exploratory surgery when the first spots appeared. We were told our son’s case seemed to be a classic case so far. That it could last from 10 days to 6 weeks. That it could possibly recur, and if it did it would probably be sooner rather than later. It’s been 3 weeks and the spots have faded significantly and the swelling is gone We were told that rheumatology would be the department to follow up with (as it seems has been Donna’s advice). If anyone could point me to some articles or information on HSP, I would really appreciate it! Thx, Karen