Langerhans Cell Histiocytosis Patient & Family Handbook

healthcare team where these areas can be found. After your child’s treatment is finished, a bone survey will be performed every few months as part of regular check-ups to make sure LCH has not returned. CT Scan Computerized axial tomography (CT) scans are computer-assisted X rays that take detailed pictures of areas inside the body from different angles. Your child will have a CT scan of his or her chest if there is a possibility that LCH has developed in the lungs. If LCH is suspected in the skull, a CT scan of the head will be performed. CT scans are painless and quick, but your child must lie completely still during the scan. Some children may require sedation to help them lie still. Your child may be asked not to eat or drink for several hours before the scan. It may be necessary for your child to drink a liquid containing a flavorless dye to make the pictures clearer. Usually, however, a small amount of dye is injected into a vein during the CT scan. Generally, no side effects occur from either type of dye; however, allergic reactions are possible. Biopsy To be absolutely certain that your child has LCH, a biopsy, or tissue sample, will need to be taken from the area that looks abnormal—usually a skin rash, a bone, the gums, or a lymph node. A pathologist, a specialized doctor who diagnoses tissue changes caused by disease, will look at the tissue sample under a microscope. The pathologist also will do special studies to look for LCH cells. Completion of these tests may take several days. When the tests are completed, your child’s healthcare team will talk to you about the results. Other Tests Depending on the location of the disease, other tests may need to be performed. These tests include an ultrasound of the abdomen, positron emission tomography (PET) scan, or bone marrow aspiration. Your child’s doctor or nurse will explain these tests to you before they are performed. n HOW IS LANGERHANS CELL HISTIOCYTOSIS CLASSIFIED? The classification of LCH is based on which parts or systems of the body are affected by the disease. Each of the following is considered a body system: bone, skin, muscles and tissues, pituitary gland, brain and central nervous system, blood and marrow, lungs, liver, spleen, lymph nodes, mouth, intestines, and the area around the eyes. Treatment is then determined according to the following groups: • Single-system disease—involves only one body system, usually bone, skin, or lymph nodes. Single-system disease can be a single lesion or can involve several sites within the same body system (several bone lesions, for instance).

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