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Sarcoidosis in children

This page has information for parents on sarcoidosis in children. It answers common questions, including:

We also have information about sarcoidosis in adults.

What is sarcoidosis?

Sarcoidosis is a very rare condition in children.

In sarcoidosis, collections of cells, connective tissue and blood vessels form small microscopic lumps. These are called granulomas.

The lungs and lymph nodes are most commonly affected, including lymph nodes that drain the lungs. Lymph nodes are part of the immune system. They help the body to fight infection.

Granulomas in the lungs can stop the lungs from working properly.

Granulomas can also form in any other part of the body, including the skin, heart and nervous system. When this happens, your child may have symptoms in that part of the body.

What causes sarcoidosis?

Because sarcoidosis is so rare, we don’t know exactly what causes it. We know that in some people it is related to the functioning of their immune system.

Normally, our immune system protects us from infection by releasing white blood cells to fight germs. This causes inflammation in the body. Inflammation is a normal part of the body’s defence and repair system, but in conditions such as sarcoidosis these processes do not seem to work normally. 

Researchers think that in a child with sarcoidosis, their white blood cells are trying to fight something that isn’t normally a threat. This leads to the formation of granulomas. We don’t know if there’s a particular environmental cause for this. Sometimes an infection appears to be the trigger.

In some cases, sarcoidosis affects more than one family member, suggesting there is a genetic component. People in the same family may share genes that make their immune systems more likely to respond like this.

How common is sarcoidosis in children, and who’s at risk?

Sarcoidosis is very rare in children. It can affect babies and young children, but it’s more likely to be found in older children and adolescents.  It seems to affect boys and girls equally.

Sarcoidosis is most commonly diagnosed in adults aged between 20 and 40.

What are the symptoms of sarcoidosis in children?

Sarcoidosis can affect children in different ways.

Many children with sarcoidosis do not experience any symptoms. It may only be discovered when changes are seen on a chest X-ray they have had for another reason.

Other children may have symptoms affecting many parts of the body and impacting on their quality of life.

Sarcoidosis symptoms in children under 5

When they do occur, the symptoms of sarcoidosis in children under 5 tend to be different from those in older children and adults. They are less likely to be related to their chest, and may include:

  • a skin rash
  • inflammation of the joints (arthritis)
  • eye inflammation.

Your child may also feel generally unwell, with symptoms like weight loss, tiredness or fever.

How is sarcoidosis diagnosed?

Sarcoidosis in children can be difficult for doctors to diagnose. This is because it is rare, and the symptoms are similar to those found in many other medical conditions. Some children may not have any symptoms.

If the doctor thinks your child may have sarcoidosis, they will ask you about your family history. Tests for sarcoidosis in children may include:

  • biopsy of the lung or other affected organs to look for granulomas. A surgeon makes a small cut and removes some tissue under general anaesthetic. This can sometimes be done using keyhole surgery
  • chest X-ray or CT scan to look at the lungs and the lymph glands that drain them
  • a breathing test to test how your child’s lungs are working
  • an eye exam to look for signs of inflammation in the eye
  • blood tests
  • urine tests.

How is sarcoidosis treated?

Not all children with sarcoidosis need treatment, particularly if they have no symptoms. Children with sarcoidosis will be treated by specialists.

The main treatment for children who are experiencing symptoms is steroid medicine.

Steroids reduce inflammation. They are commonly given for inflammatory disorders such as sarcoidosis. Steroids are usually given over a period of months, with the dosage reduced when your child’s symptoms get better. This will vary for each child.

Other medicines are also used. These include non-steroidal anti-inflammatory medicines and painkillers.

Some children may also be given medicines called immunosuppressants. These medicines help control your child’s immune system.

Support for daily life

It’s important to help your child take part in their usual activities and maximise their quality of life. To help with this, some children may have support from a physiotherapist or occupational therapist.

How long does sarcoidosis last?

Sarcoidosis runs a different course in each person. This makes it hard to predict how long it will last. It may get better over a short period of time with minimal symptoms, or it may last years or for life.

Most children treated for sarcoidosis get better over time, but some will continue to have symptoms, perhaps for years. Children under 5 are more likely to have severe symptoms that get worse over time.

After coming off steroid medicine, some children may find their symptoms come back. They will need to restart treatment.

Where can I find more information and support?

Sarcoidosis UK has information and support for people affected by sarcoidosis.

We have more information on sarcoidosis in adults.

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