LCH in Children


Langerhans cell histiocytosis (LCH) may be limited to only one part of the body, such as a bone, or it can involve many organs.  The disease may be more serious in young infants or if “risk” organs such as liver, spleen, or bone marrow are involved. When LCH affects certain bones in the skull, the patients can be at higher risk of developing diabetes insipidus and/or neurological complications.

The following symptoms may indicate disease involvement but are not necessarily diagnostic of LCH.  This disease varies greatly from patient to patient, and some but not all of these symptoms may be present.

  • Skin
    Scaly, waxy rash or lesions, hair loss, diaper rash, oozing, tenderness.

  • Bones/Single or Multiple Sites (skull, bones around eyes, back bones, extremities, ribs, pelvis, feet/toes/fingernails/hands/fingers).
    Bone pain, lumps, headaches, fracture, limp, inability to walk, collapse of disc.

  • Bone Marrow
    Low blood counts (red blood cells, white blood cells, and platelets/clotting cells), increased infections, easy bruising.

  • Gastrointestinal Tract (stomach/intestines/colon)
    Abdominal pain, yellow skin, vomiting, diarrhea, blood in stool, weight loss, bleeding from the throat, child's growth falls below the standard expectation.

  • Liver/Spleen
    Enlarged liver, swelling of abdomen, pain, abnormal liver blood tests.

  • Endocrine System (pituitary gland/diabetes insipidus, hypothalamus, thyroid gland)
    Excessive thirst, excessive urination, dehydration, fatigue, sweats, temperature changes, weight gain, weight loss, short stature/growth failure, early or delayed/absent puberty.

  • Lung
    Chest pain, shortness of breath, difficulty breathing, collapsed lung, cough, weight loss, fatigue, coughing up blood.

  • Brain/Central Nervous System
    Diabetes insipidus, headaches, dizziness, seizures, blurred vision or loss of vision, difficulty walking, abnormal protrusion of eyeballs, difficulty swallowing or speaking, behavior changes, hot flashes, temperature variations, vomiting.

  • Mouth/Jaw/Gums
    Pain and swelling of face, loosening or loss of teeth, “floating” teeth, mouth ulcers, swollen or bleeding gums, swollen lymph nodes in neck.

  • Ears
    Loss of hearing, discharge from ear canal, redness, cysts.

  • Eyes
    Difficulty seeing, bulging of eyeballs.

  • Lymph Nodes (neck, groin, armpits)
    Enlargement, tenderness.  If the enlargement surrounds the respiratory area, it can result in cough, dyspnea, or turning blue.

  • Ovaries
    Pelvic pain, change in menstrual cycle.

The organs and tissues most commonly involved are the bones (including eye bones), skin, lymph nodes, bone marrow, lungs, hypothalamic-pituitary, spleen, liver and digestive tract.  Involvement of more than one system is common.  For example, bones can be affected alone or as part of multisystem disease.  Lymph nodes and skin involvement also can be either single-system disease or part of multisystem LCH.  Young infants with skin involvement should be followed closely by a knowledgeable physician, as some cases can spread to vital organs and quickly become life-threatening.  Central nervous system involvement (CNS), including the pituitary, is often part of systemic disease, although there are cases in which diabetes insipidus is the first presenting symptom.

It is important to remember that symptoms alone do not diagnose LCH, and a biopsy of an involved site is necessary.  Thus, it is important to consult a physician to receive an appropriate workup and accurate diagnosis.

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