Immune thrombocytopenia (ITP): Information for parents

This leaflet is for parents whose child has been diagnosed with ITP.

What is ITP?

ITP is a condition in which your child bruises more than normal because there are fewer platelets in the blood than usual.

What are platelets?

Platelets are the cells in your blood that help it to clot. They help to prevent bruising and bleeding after an injury. Platelets are made in the bone marrow, along with red and white blood cells, and we can see how many platelets your child has in their blood stream by doing a simple blood test called a ‘full blood count’.

A normal platelet count is between 150 and 400. In most cases of ITP the platelet count is below 20. A low platelet count is called thrombocytopenia.

What causes ITP?

ITP is usually caused by something going wrong with the immune system (the body’s defence against infection) or an allergic reaction of some kind. The bone marrow continues to make platelets normally but something in the body is causing them to be identified as ‘foreign’ and destroyed more quickly than normal.

This can be caused after a viral illness or immunisation when your child’s immune system attacks the virus but then goes on to think that the platelets are also viruses and so attacks them.

What tests will my child have?

The platelet count can be looked at by using a simple blood test called a full blood count. If your child’s count shows recovery then they will not need further tests.

If your child’s platelet count is taking slightly longer to recover, then the doctor will carry out further blood tests. These will look at your child’s immune system and can be done at the same time as the full blood count.

In some cases the doctor may recommend that your child has a bone marrow test. This is a test where we take a small amount of the bone marrow out of the hip bone so that it can be looked at under the microscope to check that it is working properly. Your child will be given a light general anaesthetic for this test.

How long will my child have ITP?

About 4 in every 100,000 children develop ITP every year. It is slightly more common in girls than boys.

In 75% of children their platelet count will have returned to normal within six months and in some cases within six weeks. If the platelet count is still not normal after six months then the condition is called ‘chronic ITP’. In most cases in younger children, even if the count has not returned to normal within 12 months it will completely recover within a few years.

In the case of a teenager whose platelet count has not returned to normal within 12 months, it is possible that they will have the more adult form of the disease. This can mean that their platelet count never fully recovers and in this case your child will be advised on when they should seek medical advice, for example, when planning a pregnancy.

What treatments are available?

Most children do not need any treatment unless they have severe bleeding. The treatments aim to raise the platelet count and do not cure the ITP itself. Most children improve whether or not they receive any treatment.

The type of treatment given will depend upon your child’s symptoms and not on their platelet count. Before any treatment is given this will be discussed by the doctor and you will have the opportunity to ask questions.

The treatment options in ITP are:

• No treatment - The majority of children with ITP have a low platelet count and bruising but do not have severe ‘wet’ bleeding. If severe bleeding is not present at diagnosis then it is very rare for it to occur later. Without treatment most children will have recovered a normal platelet count by six months.
• Tranexamic acid - Tranexamic acid does not increase the number of platelets but helps the blood to clot. It is very useful if your child is having any bleeding from the gums, nose bleeds or heavy periods. This is taken as a liquid or tablet, three times a day as required.
• Immunoglobulins - Immunoglobulins are antibodies which can reduce platelet destruction and raise the platelet count. The effects of a treatment with immunoglobulins normally last about a month. Immunoglobulins are a product which is produced from donor blood and so there is a very small risk of transmitting blood borne infections. The doctor may suggest your child has a course of immunoglobulins if they require surgery or you are travelling abroad. The immunoglobulins need to be given through a cannula into a vein and will require your child to be in hospital. This should be as a day case but your child may need to stay overnight.
• Steroids - Steroids can be given to children with ITP on a short term basis to help temporarily boost the platelet count. When the steroids are weaned off then the platelet count will drop again after a few days. If your child is on steroids and has not had chicken pox they are at risk of catching it more severely. If they come into contact with someone who has the illness you should call for advice. Steroids can only be given in short bursts or they produce side effects such as weight gain and mood changes. Long courses of steroids can cause obesity, stunt growth, weaken bones and dampen down the immune system. It can be useful to give a short course of steroids if your child requires dental work or minor surgery. They are given as tablets or liquid.
• Thrombopoiesis stimulating agents - If your child has symptoms that are impacting on daily life such as bleeding or fatigue then treatment with TPOs (thrombopoiesis stimulating agents) can be discussed. Eltrombopag and _omiplostim are currently used. They are thrombopoietin receptor agonists that bind to and activate thrombopoietin receptors increasing platelet production. Baseline bone marrow aspirate is required and regular full blood count, liver function, and kidney function tests should be completed to monitor for toxicities.
• Splenectomy - In ITP the spleen is where most of the platelets are destroyed. Removing the spleen can prevent the early destruction of the platelets and so the platelet count rises. Splenectomy is a major surgical procedure and carries a lifelong risk of infection so your doctor will not consider this unless your child has chronic ITP and has recurrent severe bleeding. Splenectomy is rarely undertaken now in ITP patients.

Can they still go to school? What activities can they do?

We would encourage your child to get back to school once the school has been informed about the diagnosis of ITP. The ITP Support Association produces a document for schools, clubs and playgroups. The specialist nurses can also help by providing advice and care-plans for the school.

Your child can take part in normal daily activities with some sensible precautions such as:

• wearing a helmet while cycling or scootering
• not diving into the shallow end of the swimming pool
• wearing shin pads when playing football

We would not advise any sports where there is a risk of head or neck injury or severe bruising, such as rugby, karate or paintballing, while the platelet count is below 50.

When should I seek medical help?

You should contact your local hospital for review in the following circumstances:

• a prolonged nosebleed (over 30 minutes)
• prolonged gum bleeding
• blood in the urine or poo
• after a substantial blow to the head, particularly if your child is vomiting or sleepy
• persistent or severe headache

If your child is on steroids and at risk of catching chicken pox, you should contact the hospital if they come into contact with someone with the illness.

Contacts/ further information

For further information please contact:

• Telephone your paediatric haematology nurse specialist on 01223 216692
• Your local children’s community nursing team: ________________________