Members of the Oncology and Stem Cell Transplant sections of New York Presbyterian/ Morgan Stanley Children’s Hospital have particular interest and expertise in the diagnosis and treatment of disorders involving the type of cells within the immune system called histocytes. Conditions within this group include Langerhans cell histiocytosis and hemophagocytic lymphohistiocytosis (HLH).

What makes our program different

Our success is in our stories

Our expertise in diagnosing and treating histiocytic disorders can be seen in the stories of our patients.

One such patient is Xavier, who came to the ER at New York Presbyterian/ Morgan Stanley Children’s Hospital with a persistent fever and a swollen abdomen, just three days shy of his third birthday. In infants, HLH is often caused by a mutation passed along in families, but older children with HLH may develop the disorder after infection with the Epstein-Barr virus (EBV). That was the case for Xavier.

Dr. Prakash Satwani told Xavier’s mother that her son was in grave condition. After several weeks of ups and downs and an intensive treatment regimen aimed at controlling the EBV, Xavier received a bone marrow transplant, followed by an infusion of his T cells from a donor. Today Xavier is a 4-year-old boy who lives in the Bronx and enjoys basketball, Batman, and “everything iPad,” his mother says.

“From the beginning, I felt like the staff at Morgan Stanley Children’s Hospital took care of Xavier like he was their own child,” she adds. “I am so grateful to have gone there for his care and to find the doctors we needed

In another case, an infant referred to us for a bone marrow transplant for HLH diagnosed at another hospital turned out not to have the disorder, a finding made possible by the PIPseq program, our one-of-a-kind laboratory that looks at diseases at a molecular level. The patient recovered without needing a stem cell transplant.

Our approach to care

Early recognition is key

Prakash Satwani, MD, explains that “HLH is frequently misdiagnosed and that we’ve gotten very good at diagnosing the disease early, and it has changed the course of care for some patients. Early recognition is key because by the time many patients are diagnosed, the damage is done.”

It is not uncommon to have patients whose symptoms are thought to be caused by liver failure and who are referred for liver transplantation at Columbia University Medical Center, New York Presbyterian/ Morgan Stanley Children’s Hospital who are in fact diagnosed with HLH and are properly treated with a bone marrow transplant instead.

The Center for Histiocytic Disorders has specific expertise in diagnosing and successfully treating conditions related to disorders that originate with histiocytes in the immune system. We are often able to diagnose these conditions in patients who have been incorrectly diagnosed elsewhere, to direct patients to the appropriate treatment.