Lymphedema

Lymphedema is an abnormal accumulation of fluid that causes limb swelling, a buildup of fibrous connective tissue and chronic inflammation. The lymph system — a network of organs, nodes, ducts and vessels that make and move protein-rich fluid from tissues into the bloodstream — plays a key role in our immune defenses. When it functions well, lymph circulates properly. When it does not, two types of lymphedema can occur:

Primary lymphedema: Caused by a developmental abnormality of the lymphatic system. Milroy’s disease and Meige’s disease are the most common childhood types. Noonan’s syndrome, Turner’s syndrome, amniotic band syndrome, Klippel-Trenaunay syndrome and Parkes Weber syndrome are also linked to primary lymphedema in children.

Secondary lymphedema: Caused by damage to the lymphatic system. Radiation treatment for cancer is the most common childhood cause. Surgery, trauma, infection, malignant tumors, immobility and chronic venous insufficiency may also contribute to secondary lymphedema in children. Outpatient treatment for children with lymphedema involves:

  1. Complete decongestive therapy (a combination of manual lymphatic drainage and compression therapy)
  2. Home programming (tailored exercises, a schedule for wearing compression garments, and nail and skin care recommendations)
  3. Education for the child and parent or caregiver

How pediatric lymphedema services benefit families

Selecting a Pediatric Certified Lymphedema Therapist (CLT) can benefit your child in many ways. Pediatric CLTs:

  • Understand how lymphedema affects a child’s typical development.
  • Can modify bandaging and home programming for young children
  • Custom-measure compression garments for children as they grow
  • Design activities that will meet children’s needs and offer access to age appropriate equipment

Scheduling services

To schedule outpatient pediatric lymphedema services at Cleveland Clinic Children’s or to learn more, please contact Jenny Negrey OTR/L, CLT, at 440.835.7400, ext. 301, or at negreyj@ccf.org

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