At first, Lauren was puzzled. Her five-year-old daughter, Dalia, was sleeping much more than seemed normal. “She would go to school,” Lauren says, “be super tired at school, come home, go to sleep and sleep through the night until it was time to go to school again. She wouldn’t eat, she wouldn’t play, she wouldn’t watch TV. She would just sleep.”

She called Dalia’s pediatrician about it, and the doctor said that in the absence of any other symptoms it was probably nothing to worry about.

Then Dalia stopped eating. “The school called me to ask if she was eating at home, because she hadn’t eaten at school for a week,” Lauren says. “And I said no, that she was sleeping a lot. She wasn’t hungry, she didn’t want to eat. I would just force her to eat— something, anything.”

This time, with new symptoms, the pediatrician asked Lauren to bring Dalia in for some tests. They took blood samples, checked her blood pressure and ran several other tests. But all of the tests came back normal. With those results, the doctor was still cautiously optimistic, thinking it might just be a passing situation. Lauren was more concerned. “This is a five-year-old girl,” she says. “She’s not playing, she’s usually a chatterbox, and she sleeps as soon as she gets in the house, as soon as she gets in the car, as soon as she gets on the bus. Something is going on.”

For the next two months, Lauren had Dalia on a liquid diet, because she wouldn’t eat anything. And there were many trips back and forth to the doctor’s office.

Then Dalia stopped drinking.

“It was crazy,” Lauren says. “At this point, we were going to the doctor’s office every week to make sure nothing is breaking down. And all her vital signs still came back OK. They were sending her for more tests, to this specialist and that specialist.”

Then things got really bad.

“Dalia’s skin started to break down,” Lauren says. “When I say her skin was breaking down, I mean there were holes in her skin. Her skin was missing in spots.”


“I was out of my mind with worry. I had just given birth to my son, and my biggest kid was falling apart. I didn’t know what to do.” -Dalia’s mom, Lauren


But in this particular case, the problem could be diagnosed. Dalia’s skin breakdown was due to Gianotti-Crosti syndrome, a rare skin disease. (In Italy, where it best known, there were only 300 cases over 40 years). It causes large, fluid-filled blisters. Specialists don’t know what causes it, but they suspect it is the body reacting to a prior virus.

Happily, there are medications to treat Gianotti-Crosti, and they helped Dalia. But a diagnosis for her other symptoms continued to elude the doctors, despite their diligent efforts. They sent her to one specialist after another, with no solution. Finally, they decided to try rheumatology, and they sent Dalia to Connecticut Children’s. And here, as so often happens, our specialists were able to solve the problem that seemed unsolvable.

Dalia was examined by Barbara Edelheit, MD, the Division Head of Rheumatology, who said that Dalia was suffering from dermatomyositis. This is an extremely rare inflammatory disease that affects skin and muscles—it affects only three in one million children.

Dr. Edelheit started Dalia on a high dose of prednisone and, a week later, added methotrexate, a drug used in chemotherapy for cancer, used here in a lower dose. With those treatments, Dalia’s symptoms started to recede. Dr. Edelheit also did a blood test that showed Dalia was positive for an antibody called MDA 5. “It made me nervous that she might have lung disease,” she says, “so I sent her to one of our pulmonologists, Dr. Lapin.” Dermatomyositis can affect many parts of the body, and lung scarring is an uncommon but potentially devastating effect of the disease. It restricts the amount of air the lungs can hold and can be very serious. The presence of MDA 5 antibodies is an indication that the child is susceptible to that kind of damage. Dr. Lapin (Craig Lapin, MD) conducted pulmonary function tests and did a CT scan of Dalia’s chest and found that she did not yet have any damage. But he still followed her closely for some time, to be sure it doesn’t develop later—dermatomyositis is a lifelong condition.

Dalia initially visited Dr. Edelheit in December 2017. By the following April, her symptoms had significantly improved, and Dr. Edelheit reduced the dose of prednisone. By October, Dalia had no complaints of weakness or rash at all and no longer needed the prednisone but stayed on a weekly dose of methotrexate. Even better, repeated blood tests showed that the MDA 5 antibodies were no longer showing up. She was considered in remission on medication. When she was still doing well in December 2019, two years after first coming to Connecticut Children’s, Dr. Edelheit tapered off the methotrexate, and Dalia has been in remission off medication ever since.

Today, Dalia is 10 and doing very well. She likes playing with her friends and going to summer camp, but her main love is drawing. She still sees Dr. Edelheit, but the visits are becoming less frequent. She just switched from going for bloodwork and checkups every three months to every six months. That will eventually shift to annual visits and finally to no more specialist checkups. For a child who was so seriously affected by this disease, that’s a miraculous prospect.

Dalia | All-Star Class of 2021