Symptoms and Signs of Langerhans Cell Histiocytosis

Your doctor talks about symptoms when he means the signs of a disease which you can notice yourself. Others signs of your disease will only be detected by special examinations. The symptoms and signs of Langerhanscell Histiocytosis (LCH) vary a lot between different patients. Most patients have only one or two of the symptoms and signs described below. You can help your doctor figure out the right treatment by telling him the symptoms you have observed.


In 80% of all children suffering from LCH, the disease affects the bones. This means that 4 of 5 children with LCH have problems with their bones. In most cases, these are bumps or indentations which can hurt. You may also have sore limbs. Only rarely LCH causes a broken bone called a fracture.

In case that a bone is broken, it may sometimes be sufficient to put it into a cast. In other cases, a doctor must first perform an operation, also called surgery, and put in one or two metal pins to fix the correct position. They will be removed when your bone has healed. However, don't worry, because kids' bodies are great healers. Your bone will produce a lot of new bone cells and will soon be as good as new. And while you're wearing the cast, a physical therapist (also called PT) will help you. The PT knows a lot about the body and how movement can be restored or improved. A PT can for example teach you how to walk with crutches or how to make exercises to strengthen weak muscles.

There are quite a lot of other diseases causing similar bone problems like LCH. This is why your doctors will perform a biopsy to make sure it's LCH and to choose the correct treatment.


One third of the children with LCH have skin problems. LCH affecting the skin causes a persistent rash. A rash is a swelling or irritation of the skin. It can be red, dry, scaly, or itchy, and it can include blisters and pimples. Getting a few rashes during childhood is quite normal, especially for babies. They can have a rash on their head (called cradle cap), below their nappy (called nappy rash) or in the folds of their skin. The rashes caused by LCH are often very much alike. This is why doctors sometimes mix it up with the wrong disease. They will have to take a biopsy to see if it's really LCH. A special skin doctor called dermatologist may examine your whole body and then choose the best treatment to heal your rash.


LCH affecting one or two ears causes ongoing infections or discharge.

Most kids have had an ear infection, for example an otitis media. Media means middle, so when you get this kind of ear infection, germs get into the middle part of the ear causing fluid or pus to build up in the space behind the eardrum. This makes your ear sore. The good news is that treatment against LCH can also stop ear infections which are related to LCH.

Internal Organs

Internal organs possibly affected by LCH are liver, spleen, bone marrow, and lung. LCH may also cause diarrhoea, sickness and poor gain in weight.

Excessive Thirst and Urination

LCH affecting the pituitary gland can implicate hormonal problems. This can cause a disease called diabetes insipidus which is characterised by be­e­ing hor­ri­bly thirsty and/or peeing an awful lot. Doctors call excessive thirst polydipsia and excessive urinating polyuria.

Growth and Puberty

LCH af­fec­ting the pi­tui­ta­ry gland can im­p­li­ca­te hor­mo­nal deficits. This can cau­se problems with growth and puberty.


  • LCH can affect the eye causing vision problems or bulging.
  • It can also affect teeth and gums causing loose teeth or swollen gums.
  • Rarely, LCH affects the brain or the spinal cord causing some neurologic deficits like problems with balance, movement and/or concentration.
  • An LCH patient may also have general symptoms such as fevers or weakness.

Some children however seem very well, which can make it even harder to take in the correct diagnosis.