It started as a mystery and grew to be a frightening enigma. Five-year-old Dalia was sleeping all the time. All the time. She would come home from school and go straight to bed, sleeping until being forcibly wakened the next morning for school. No games, no playing with friends, no TV, just sleeping. Her pediatrician said it was probably within a normal range of behavior.
Then she stopped eating. She simply had no interest at all in food. That was not normal.
Then she stopped drinking. Dalia’s mother, Lauren, had to force her to drink Pedialyte so she was getting at least some nutrition. Her pediatrician performed every kind of test, but all her results were normal.
This progression happened over a period of months, and Lauren became increasing alarmed. “It was crazy,” Lauren says. “At this point, we were going to the doctor’s office every week to make sure nothing was breaking down, seeing one specialist after another. And all her vital signs came back OK.”
Then things got even more alarming: her skin started breaking down.
This problem, at least, had an answer. Her doctors found she had Gianotti-Crosti syndrome, a very rare skin disease. Happily, medications could address that problem. But her other symptoms remained an enigma.
Finally, Dalia’s doctors sent her to Connecticut Children’s Rheumatology Division, where Barbara Edelheit, MD, the head of the division, provided the answer: Dalia was suffering from dermatomyositis, an extremely rare inflammatory disease. When Dr. Edelheit started Dalia on a course of steroids, she stopped being so tired and she began eating and drinking. Today, she is 10 and still sees Dr. Edelheit every six months, though she no longer needs medications. She is going to summer camp, playing with friends, pursuing her passion for art and generally living a full and happy life.