Langerhans Cell Histiocytosis

  • Langerhans cell histiocytosis (LCH) is a rare disorder that occurs when your child has too many of a certain type of white blood cell.

    • The white blood cell affected is called a Langerhans cell (it was named for a German scientist).
    • These cells normally reside in the skin and help fight infections and destroy certain foreign substances in the body.
    • In LCH, these cells accumulate on bones and other parts of the body, particularly the head and neck, causing a wide range of problems.
    • LCH can also be found in the ribs, sternum, long bones of the arms and legs, vertebra of the spine and the pelvis.
    • Although LCH can occur in people of all ages, a majority of cases occur in children who are under 10 years old.

    Individualized care, new treatments

    Through Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, a 50-year partnership between Dana-Farber Cancer Institute and Boston Children's Hospital, patients with LCH receive individualized care to treat every aspect of this condition from an expert team of specialists. Patients also benefit from a team of researchers striving to understand the scientific causes of Langerhans cell histiocytosis, which results in continual introduction of new treatment options.

  • What causes Langerhans cell histiocytosis?

    We don’t really know. Researchers are studying viral infections or environmental factors that could lead to this disorder.

    What are the symptoms of LCH?

    LCH can result in symptoms in one or several parts of the body. Common symptoms your child may be experiencing include:

    • skin rash
    • tenderness or pain originating from a bone
    • loose or lost teeth
    • swollen gums
    • multiple ear infectionseyelid swelling and other vision problems
    • excessive thirst and urination
    • fever and night sweats
    • weakness and failure to gain weight
  • How is Langerhans cell histiocytosis diagnosed?

    In addition to a complete medical history and physical examination, the most conclusive diagnostic procedure for LCH is a biopsy—a single tissue sample through a simple surgical procedure.

    Your child will likely have various imaging studies that will include one or more of the following:

    • X-ray - X-rays are the first diagnostic study, and often give your doctor information regarding the need for further testing.
    • Bone scans - A nuclear imaging method used to determine the cause of bone inflammation. This test does not distinguish between tumor, infection or fractures.
    • Magnetic resonance imaging (MRI) - This test produces detailed images of organs and other structures in your child’s body.
    • Computerized tomography scan (also called a CT or CAT scan) - A CT scan shows detailed images of any part of the body, including the bones, muscles, fat, and organs. CT scans are more detailed than general x-rays.
    • liver or bone marrow biopsy - Sample tissue from these areas of the body can be helpful in determining how much of your child’s body is affected by LCH.

    Your child’s doctor may also ask for a complete blood count and other blood chemistry tests that can provide further help in making a diagnosis.

  • What are the treatments for Langerhans cell histiocytosis?

    Treatment for LCH varies widely. In some children, the disease will go away without any treatment at all.

    For other children, treatment may include:

    Medications

    Steroids, hormones and other drugs

    Surgery

    Surgical removal of growths of LCH cells

    Radiation therapy

    Radiation therapy uses high-energy rays (radiation) from a specialized machine to damage or kill abnormal cells. Small doses of this treatment, usually used against cancer, can help stop the growth of Langerhans cells in specific areas of the body.

    Chemotherapy

    Small doses of this treatment, usually used against cancer, can help stop the growth of Langerhans cells throughout the body. Chemotherapy is systemic treatment, meaning it is introduced to the bloodstream and travels throughout the body to kill cancer cells. Chemotherapy can be given:

    • as a pill to swallow
    • as an injection into the muscle or fat tissue
    • intravenously (directly to the bloodstream)
    • intrathecally (directly into the spinal column with a needle)

    While chemotherapy can be quite effective, the treatment doesn't completely differentiate normal healthy cells from abnormal cells. Because of this, there can be adverse side effects during treatment, all of which your child's physician will discuss with you.

    What's the long-term outlook for my child?

    Most children with LCH will survive the disease, although some children may develop long-term chronic health problems. If the disease occurs in an infant, the chances of it being a severe form of the disease are much greater.

    Each child's response to LCH and its treatments vary widely and your doctor will speak with you about your child's individual situation.

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