Blood Clotting Disorders in Children

What are blood clotting disorders?

Blood clotting disorders are a group of conditions in which there is too much clotting.

Blood clotting is a normal process. It stops you from bleeding too much when you have a cut or injury. Blood clots can fix damaged blood vessels. Usually clots go away on their own.

But blood clots can also form when they aren’t needed, causing serious problems. They may form when there is no injury or bleeding. They can block veins or arteries. This may interrupt blood flow to part of the body. The clots may prevent blood flow to organs, such as the brain, lungs, and heart.

Blood clotting disorders may be diagnosed in childhood. But they are usually found during the teen and young adult years. They are often genetic, meaning they are inherited and present at birth. But there may be no symptoms for many years.

Some of the clotting disorders are:

  • Factor V Leiden. This inherited disorder increases the risk for deep vein thrombosis (DVT). A DVT is a clot that develops deep in the body, often in the leg. This disorder also raises the risk of problems with pregnancy, such as pregnancy loss (miscarriage). It is the most common inherited clotting disorder. It occurs most often in children whose families are from Europe. Many people have this disorder. But most never develop harmful blood clots.
  • Prothrombin thrombophilia. This is the second most common type of clotting disorder. It also increases the risk for DVT and pregnancy problems, including slowed fetal development and miscarriage. It is also most likely to occur in children with families from Europe. Most people with this disorder don’t develop harmful clots.
  • Protein C deficiency. This condition ranges from mild to severe. Most people have no symptoms or have an increased risk for DVT. An infant with the severe form can develop tiny blood clots all over his or her body. The clots may prevent blood flow and may cause tissue death.
  • Protein S deficiency. This condition also ranges from mild to severe.  As with protein C deficiency, most people have no symptoms or have increased risk for DVT. Those with the severe form can develop tiny blood clots that may lead to tissue death.
  • Antithrombin deficiency. This inherited disorder greatly increases the risk of blood clots. These clots may cause DVT or a blood clot in the lungs (pulmonary embolism).

What causes blood clotting disorders?

Clotting disorders are usually inherited conditions. Some illnesses may increase the risk of blood clots.

What are the risk factors for blood clotting disorders?

Many children with clotting disorders don’t have blood clots. Some things increase the risk of getting clots as children get older. These include:

  • Using birth control pills
  • Surgery
  • Injuries
  • Cancer
  • Being confined to bed for a long time
  • Pregnancy and the 6 weeks after having a baby (postpartum period)

What are the symptoms of blood clotting disorders?

Clotting disorders have no symptoms. But if a deep vein thrombosis (DVT) forms, the symptoms are:

  • Swelling in an arm or leg
  • Soreness or pain in an arm or leg
  • Red, pale, or bluish skin color
  • Coolness or warmth over an area of an arm or leg

A pulmonary embolism is a blood clot in the lungs. This is an emergency. Symptoms include:

  • Trouble breathing
  • Chest pain
  • A fast heartbeat
  • Coughing
  • A slight fever
  • Fainting

If you think your child may have a clot in his or her lung, call 911 or go to an emergency room right away.

How are blood clotting disorders diagnosed?

Your child’s healthcare provider will take your child’s medical history and do a physical exam. The provider will also look at your child’s current symptoms and family history. The provider will likely order some tests.

Blood tests may include:

  • Complete blood count (CBC).  A complete blood count checks the red blood cells, white blood cells, and blood clotting cells (platelets). Sometimes young red blood cells (reticulocytes) are also checked. 
  • Clotting tests. This test checks the level of clotting factors in the child’s blood and how long it takes to clot.
  • Genetic tests. This test checks for gene defects known to cause clotting disorders.

Imaging tests may include:

  • Doppler ultrasound. This test shows the blood flow through the vessels. It can see where a blood clot is located.
  • CT angiogram or MRI/MRA. This test may be needed if the provider thinks your child may have a pulmonary embolism or a brain blood clot.

How are blood clotting disorders treated?

Your child’s provider will likely refer you to a hematologist. This is a specialist in blood disorders. Medicines are the main treatment for clotting disorders. They include:

  • Blood thinners (anticoagulants). These may be given by IV (intravenously) in your child’s vein. Or they may be given as a shot (injection), or given in pill form and taken by mouth.
  • Aspirin. This may be used with blood thinners.

Your child may need to take a blood thinner for a long time. During high-risk times (such as having surgery) your child may need other medicines to help manage or prevent clots. These medicines will often be started while your child is in the hospital. They will be continued at home, often for several weeks or months.

What are the complications of blood clotting disorders?

Serious complications from clotting disorders are not common in children. But problems can occur. Complications include:

  • Problems with pregnancy and delivery, as girls get older
  • Pulmonary embolism
  • Stroke, if a clot blocks blood flow in the brain
  • Death 

How are blood clotting disorders managed?

Work with your child’s healthcare provider to help prevent clots. As your child gets older, help him or her avoid things that further increase the risk of blood clots. These include:

  • Being overweight
  • Being inactive
  • Using a hormonal birth control method  
  • Smoking

Since there are risks linked to pregnancy, women should get counseling before considering pregnancy.

When should I call my child’s healthcare provider?

Call your child’s healthcare provider if your child has symptoms of a deep vein thrombosis, or clots anywhere in the body.

Key points

  • Blood-clotting disorders are a group of conditions in which there is too much clotting. These disorders may be diagnosed in childhood. But they are usually found during the teen and young adult years.
  • Many clotting problems are inherited. Some occur with other conditions.
  • Blood clots can cause deep vein thrombosis, a blood clot in the lungs (pulmonary embolism), and other serious problems.
  • Blood-thinning medicines may be used to treat clotting problems.
  • Healthy lifestyle choices can help prevent blood clots. These include staying at a healthy weight and getting regular exercise.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

  • Know the reason for the visit and what you want to happen.
  • Before your visit, write down questions you want answered.
  • At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.
  • Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.
  • Ask if your child’s condition can be treated in other ways.
  • Know why a test or procedure is recommended and what the results could mean.
  • Know what to expect if your child does not take the medicine or have the test or procedure.
  • If your child has a follow-up appointment, write down the date, time, and purpose for that visit.
  • Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.

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