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Mastocytosis

Mastocytosis (Urticaria Pigmentosa) is a condition where your child has more than the normal number of mast cells in the body. Mast cells are found in everyone in the skin, gut (stomach) and air passages. Mast cells contain many different natural chemicals, a common one being histamine. A number of things can trigger or cause the mast cells to release these chemicals, including heat, rubbing and certain foods and drugs. In children with mastocytosis they release more chemicals than their body needs due to the extra mast cells. The chemicals can cause symptoms that range from very minor to severe.

Mastocytosis can come on at any age, but the disease is different when adults get it. Children with mastocytosis usually get it in the first year of life. Children with mastocytosis usually have an increase in the number of mast cells in the skin only. It is very rare for children to have an increase in mast cells in other organs.

In children who have mastocytosis only in the skin, it is most likely that it will go away. This may take many years. 7 out of 10 children can expect a major improvement by the time they are 10 years old.

Signs and symptoms

• The mast cells do not usually cause problems. 4 out of 10 children with mastocytosis do not have symptoms.
• The skin will have one or many pink or brown spots, which may be flat or raised. The spots may be anywhere on the body, but especially on the trunk and limbs. As the condition gets better, the spots often fade but may remain for years.
• When the mast cells in the skin release their chemicals, it can cause the spots to become itchy, red and swollen (like hives), or occasionally even blister. This may happen for no reason, but is more common after stroking, rubbing or with heat.
• If there are only one or two spots, the chemicals released by the mast cells are not enough to cause other problems.
• If there are many spots on the skin then it can cause flushing, irregular heart beat, tiredness and headaches. Diarrhoea and tummy pain are possible symptoms. 
• Very rarely, there can be a strong reaction, with lightheadedness, breathing difficulty, wheezing and even fainting.

Causes

• It is not known what causes mastocytosis, but a genetic problem has been found in some patients.
• It is not usually passed on from one generation to the next.
• It is not contagious, i.e. can't be caught by other people in contact with your child.

Treatment

Sometimes a blood test and/or a skin test is required. This can:

• Confirm the diagnosis of mastocytosis.
• Determine the extent of the condition. 
• May help to predict the course of the condition.

Often no medication is needed. However, antihistamines (eg Zyrtec, Claratyne, Zantac) in tablet or syrup form, may be used to relieve symptoms. You can get these from your local chemist. Topical cortisone creams and wet wraps have also been used.

We do not recommend routine carrying of an Epi-pen.

Care at home

Care at home involves avoiding things that trigger or cause a response in your child.

Medications

• Some medications can stimulate mast cells to release histamine. It is better that your child avoids these. For example, pain killers, cough medicines and anaesthetics can cause problems. Always check medications with your doctor. If your child is having surgery, inform the anaesthetist about the mastocytosis.
• The list of medicines to avoid include:

Food

• Some children find that large amounts of certain foods can also cause a flare up of the condition. If you feel this may be relevant to your child, the following is a list of foods that can sometimes cause this:

Other things that may also trigger a response are:

• Hot baths 
• Drinking hot liquids
• Swimming in cold water
• Exercise
• Emotion/stress 

Follow up

• Your child should have regular check ups  with your family doctor or Dermatologist if they have more than a few spots.
• Your child's growth and development should also be checked regularly. Usually there is no problem.

Please contact your child's doctor if they have problems such as:

• Skin flushing, diarrhoea, headaches or bone aches that continue.
• Or if they look pale and unwell.

Key points to remember

• Mastocytosis in children is usually a harmless condition that goes away over years.
• It can't be caught by others and is not usually passed on from generation to the next.
• Adult mastocytosis is different to childhood mastocytosis.

Other sources of information

• Ask your dermatologist or paediatrician if you would like any further information. Be aware that information about adult mastocytosis may not be relevant to children with mastocytosis.
• Support group website: www.mastokids.org
• Find a doctor online at RCH kids connect-Find a doctor

Individual Information