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Symptoms of Langerhans Cell Histiocytosis

Symptoms of Langerhans cell histiocytosis depend on which tissues and organs it affects. Not all children with the disease have the same symptoms.

These are some symptoms that may occur in a child with this disease:

  • Pain, swelling or lump in a bone that does not go away, such as on the skin, arms or legs
  • Bone fracture for no clear reason or from only minor trauma
  • Loose teeth when you would not expect this, or swollen gums
  • Ear infection, cysts in the ear or fluid that oozes from the ear
  • Skin rash, such as on the scalp or buttocks
  • Swollen lymph nodes in the neck (also called swollen glands)
  • Liver problems, which may cause jaundice (yellow color in the whites of the eyes; maybe yellow tint in the skin for some skin colors), fluid in the belly, diarrhea or vomiting
  • Bulging eyes or other eye problems
  • Cough and trouble breathing
  • Weight loss for no reason
  • Failure to thrive, which means not gaining weight and growing normally
  • Not wanting to eat or having problems feeding
  • Needing to urinate more often than normal and being very thirsty (signs of a health problem called diabetes insipidus)
  • Basic signs of illness, such as fever, fatigue and weakness

The same symptoms can also be caused by other health problems. So it's important for a child with symptoms like these to see a doctor to find out the cause.

Langerhans Cell Histiocytosis Diagnosis

It can be hard for doctors to diagnose this disease because it is rare.

Your child's doctor will start with a thorough exam to look for signs of illness and will ask about your child's health background. Then the doctor may suggest a number of tests to tell what is happening in your child's body.

Blood tests are a common step. They can give information about what is going on in the blood and the bone marrow, as well as in some organs, such as the liver.

Your child's doctor may also want your child to have pictures taken of the inside of her body, such as an X-ray, CT (computed tomography) scan or MRI (magnetic resonance imaging.

These are called imaging studies, and they allow the doctor to look for areas of disease, such as damage to your child's bones, lungs or brain.

If the doctor thinks that your child may have histiocytosis, the doctor will perform a biopsy to confirm this. This may mean taking out a small piece of bone, lung or skin or lymph nodes.

Who Treats This at Seattle Children's?

Should your child see a doctor?

Find out by selecting your child’s symptom or health condition in the list below:

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