Langerhans Cell Histiocytosis Patient & Family Handbook

Mouth LCH mouth lesions may appear as unexpected loose teeth, early tooth loss, or swollen gums.

Ears LCH ear lesions often are accompanied by continuous ear drainage or a history of frequent ear infections. Gastrointestinal System LCH gastrointestinal lesions may cause long-lasting diarrhea and poor weight gain. In some cases, the liver and spleen may become enlarged.

Lungs LCH lung lesions may cause a chronic cough, chest pain, or poor weight gain.

Central Nervous System LCH central-nervous-system lesions may cause headaches, excessive thirst and urination, abnormal swelling around the eyes, bulging eyes, changes in behavior, or seizures.

n WHAT TESTS AND PROCEDURES WILL MY CHILD NEED? Your child’s healthcare team will meet with you to discuss your child’s symptoms and will order specific tests to make a diagnosis. Common tests and procedures your child might need include the following. Blood Tests Blood tests may be done to rule out other diseases but are not useful for diagnosing LCH. They are performed during therapy to monitor both your child’s response to treatment and any possible side effects of therapy. Blood tests check your child’s blood cells, body salts, and chemistries. A complete blood count (CBC) is a type of blood test that is useful in detecting a drop in the number of red blood cells (cells that carry oxygen), white blood cells (cells that fight infection), or platelets (cells that help blood clot properly). Tests of blood chemistries, such as blood urea nitrogen (BUN) and creatinine, monitor changes in kidney function. Tests of other chemistries, such as alanine aminotransferase (ALT), aspartate aminotransferase (AST), and bilirubin, may be done to assess liver function. X Rays Your child will need X rays to determine which bones are affected by LCH. A bone survey or skeletal survey, which X-rays all the bones in your child’s body from head to toe, is the most common X ray used to detect LCH. If LCH is suspected in a bone, the area is usually described as lytic, which means that some of the bone has been eaten away by the abnormal LCH cells. You might not be able to feel these areas with your hand, so the bone survey will show your child’s

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