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Lymphedema in Kids: What Parents Need to Know

Nov 09, 2023
doctor checking a patient's lymph nodes

The lymphatic system is part of the body’s immunity system that fights disease and infection. It is made up of a group of organs, vessels and tissues that help drain and collect fluids in your body. When these fluids can’t drain properly, they accumulate and cause swelling. This is called lymphedema. Typically, patients with lymphedema have swelling in one arm or leg that worsens over time.

As a microsurgeon and assistant professor at The Ohio State University and Nationwide Children’s Hospital, I know that lymphedema affects more children and teens than you might expect. Here are common questions about this condition.

What Causes Lymphedema in Children and Teens?

There are two types of lymphedema: primary and secondary lymphedema. Secondary lymphedema happens when the lymphatic system is damaged, often because of surgery or trauma, like breaking a bone. It is the most common type of lymphedema. It often affects people who have had cancer surgeries where lymph nodes were removed, or lymphatic vessels were damaged.

Primary lymphedema is a congenital condition, meaning patients are born with the disease. It can show up at birth or during teen years. Patients will often go to the doctor complaining of heaviness, aching and unusual swelling in one arm or leg. They also tend to struggle doing normal activities such as walking or finding clothes/shoes that fit.

How Is Lymphedema Diagnosed?

It is important to diagnose and treat patients with lymphedema as soon as possible. The key symptoms of lymphedema include swelling in one arm or leg, feelings of heaviness, pain, aching, skin thickening, and a history of cellulitis or skin infections.

Patients who may have lymphedema should get a type of imaging called lymphoscintigraphy. In lymphoscintigraphy, a special dye is injected into the affected tissue to see if there are any problems in the lymphatic system.

Another important tool for diagnosing and treating lymphedema is ICG fluorescence mapping. ICG is a dye that is injected into the affected area and then observed under fluorescent light. This allows doctors to see what lymphatic channels may be blocked or missing.

How Can You Treat Lymphedema?

Not that long ago, liposuction and compression were the only options to treat lymphedema. But as micro- and supermicro-surgeries have advanced, we’re able to treat lymphedema earlier, restore the lymphatic system, and prevent it from getting worse.

A procedure called lympho-venous bypass (LVB) can be done to create a new route around the blocked areas and bring back lymphatic flow. If the lymphedema has progressed so far that LVB is not possible, other treatment options include lymph node transfer, liposuction, compression, or other surgeries.

Can Lymphedema Be Prevented?

Preventive treatments are available for patients at high risk of developing lymphedema. In these cases, doctors might perform preventive (prophylactic) LVB to prevent blockages. It reduces the chances of lymphedema occurrence from lymph node dissection, which is a surgery to remove an area of the lymph nodes, or other traumas.

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Min Jeong-Cho
Pediatric Plastic & Reconstructive Surgery

Min Jeong-Cho, MD is a community provider for the Pediatric Plastic and Reconstructive Surgery department at Nationwide Children's Hospital.

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700 Children’s® features the most current pediatric health care information and research from our pediatric experts – physicians and specialists who have seen it all. Many of them are parents and bring a special understanding to what our patients and families experience. If you have a child – or care for a child – 700 Children’s was created especially for you.