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Common Childhood Conditions

Lymphedema

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What does lymphedema look like?

Lymphedema is swelling that happens when thick, protein-rich fluid called lymph builds up in the body. This happens because of a problem in the lymph system.

Usually, lymphedema affects an arm or leg, but it can also affect the head, neck and trunk. The area gets larger than normal because of the lymph building up. It may look puffy, and the skin may appear tight.

You may notice that your child’s clothes or shoes don’t fit well over the swollen part. The area may feel full, heavy or achy to your child. The body part might become harder to move or bend.

Swelling may be worse at the end of the day or after your child has been more active.

Minor swelling in an arm or leg may improve if your child lies down and raises the limb higher than the heart. In most cases, lymphedema will not get better with this step.

What causes lymphedema and who gets it?

Lymphedema occurs when the lymph system can’t drain lymph well. This can happen because of several reasons:

  • There aren’t enough lymph vessels or lymph nodes.
  • The lymph vessels are too big or too small.
  • The lymph vessels didn’t form as they should.
  • The lymph vessels or nodes were damaged.

Lymphedema is not the same as the normal swelling that happens after a common injury, like a sprained ankle. Normal swelling usually goes away for good after a few days or weeks, but lymphedema does not get better on its own.

In primary lymphedema, a child is born without some lymph vessels or nodes, or they didn’t form normally. When this happens, the vessels or nodes don’t collect or filter lymph the way they should. Symptoms may be present at birth or may not appear until your child is older. Sometimes, symptoms start during a growth spurt in an older child or teen.

Primary lymphedema may be linked with other conditions, such as:

In secondary lymphedema, lymph doesn’t flow the way it should because a child’s lymph vessels or nodes were damaged or removed. Causes may include cancer treatment, injury or infection.

Will lymphedema cause other problems?

Lymphedema is a long-lasting (chronic) condition. It gets worse if it’s not treated. Once lymph collects, it pulls more fluid to that area. Lymphedema can also lead to hardening of the skin and tissue (fibrosis), which makes it harder for lymph to drain.

Swelling and fibrosis keep oxygen and nutrients from getting into the area. This can keep wounds from healing well, and it can increase the risk for infection in the skin (cellulitis) and lymph vessels (lymphangitis). 

I think I’ve seen lymphedema in my child. What should I do now?

A child who might have lymphedema should see a vascular anomalies specialist. There’s no cure for lymphedema. But treatment can help move lymph and reduce or prevent swelling. This can help your child feel better and stay active, and it can help prevent fibrosis, infection and other problems.

Seattle Children’s has the only program on the West Coast that treats lymphedema in babies, children and teens. Our Vascular Anomalies team brings together many types of healthcare providers to assess and meet your child’s needs. The team includes certified lymphedema therapists – occupational therapists and physical therapists with special training to manage lymphedema. They are experts at working with children who have this condition and at teaching children and families to manage it at home.

Call the Vascular Anomalies Clinic at 206-987-4606 to schedule a visit.

How will Seattle Children’s diagnose lymphedema?

A doctor in our Vascular Anomalies Clinic will examine your child and ask about your child’s symptoms and health history. This may provide all the information the doctor needs to make a diagnosis.

In some cases, the doctor may order tests to look at your child’s lymph system or to rule out other causes of swelling. These tests include:

  • Ultrasound to look at the swelling and tell if it is fluid and whether it is lymph, blood or something else. Also, an ultrasound can check for a blood clot in a vein, which could cause swelling that looks like lymphedema.
  • MRI (magnetic resonance imaging) to look at the swelling and look for missing or abnormal lymph nodes or other causes of swelling, like malformations of arteries or veins. Sometimes, the radiologist will add a dye or contrast agent by vein to better see the cause of the swelling.
  • Lymphography and lymphoscintigraphy to map the lymph system and track the flow of lymph to find points that are blocked. We rarely need these tests to make this diagnosis.

Your child’s doctor may recommend genetic testing and counseling if your child’s lymphedema might be from a condition that can be passed down in families.

How will Seattle Children’s treat lymphedema?

A certified lymphedema therapist at Seattle Children’s will see your child and develop a treatment plan just for them using complete decongestive therapy (CDT).

There are four parts to CDT:

Skin care

Simple steps can help keep your child’s skin healthy and prevent infections or give you a chance to notice and treat any infection early. Your child’s therapist will teach you and your child how to keep the skin clean, how to take care of minor wounds and which signs might mean the skin is infected.

Manual lymph drainage

This special method of gentle massage can improve the flow of lymph into and through the lymph vessels. Your child’s therapist will use this method to drain a swollen area. We’ll also teach you and your child how to do this at home.

Compression therapy

Wrapping a swollen limb with short-stretch bandages can get lymph to flow out of the limb into the trunk. Your child’s therapist will do this and will also teach you and your child to use wrapping at home. Once the swelling goes down, the therapist will measure your child for custom compression garments. Your child wears these special sleeves or stockings to keep pressure on the area and prevent lymph from building up again.

Exercise

Certain actions that move the muscles and skin can stimulate the lymph system. Your child’s therapist will create a simple home program that’s right for your child to promote movement throughout the day.

Who Treats This at Seattle Children's?

Should your child see a doctor?

Find out by selecting your child’s symptom or health condition in the list below:

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