My child has lymphedema

« My child has been diagnosed with lymphedema »

Children can be born with a malformed or absent lymphatic system and develop lymphedema at any age. This is called primary lymphedema. Sometimes, lymphedema is visible from birth. In other cases, where the lymphatic system is deficient but manages to compensate for lymphatic overload, lymphedema may appear later, either during the hormonal changes typical of adolescence or in young adults.

As with adults, children can also suffer from secondary lymphedema, i.e., lymphedema secondary to another cause. If your child has had an infection, lymph-node surgery or cancer treatment, lymphedema can develop.

Like all parents going through a similar experience, you’re probably worried about your child’s health and future. This is perfectly normal.

But know that your child will grow up to have a fulfilling life, where lymphedema self-management will find its place and your child will reach his or her full potential.

The diagnosis of pediatric lymphedema is usually confirmed by clinical evaluation and imaging tests, which may include magnetic resonance imaging and lymphoscintigraphy. Genetic testing remains an avenue to be explored.

Although lymphedema cannot yet be cured, it can be controlled with regular care.

It should be noted that lymphatic surgery, in addition to conservative care, is not offered until adulthood, when growth is complete.

Until your child can self-manage his or her condition, you will learn to provide the care necessary to control lymphedema. CHU Sainte-Justine is the leading pediatric center in Quebec for these young patients.

Essentially, the team will help you:

Learn to put on and take off compression garments daily.
Wash prescribed compression garments daily.
Observe, clean and moisturize your child’s skin.
Renew compression garments as your child grows or they wear out. The generous RAMQ program (link to RAMQ Program page) reimburses up to 100% of the cost of 10 garments per year.
Encourage physical activity and healthy eating. The more a child enjoys physical activity, the better lymphedema will be controlled. Pool activity offers the advantage of combining the natural compression of water.
Be vigilant for wounds, insect bites, signs of infection, and prolonged immobility (long rides in car seats or airplanes).
Collaborate with the multidisciplinary team at CHU Sainte-Justine. This team includes a physician, a nurse, a physiotherapist specialized in lymphedema, an occupational therapist, a psychologist, a social worker, and a children’s compression garment orthotist.
Integrate your child into the self-management routine and delegate self-care tasks according to his or her abilities.
Support your child emotionally and psychologically with regard to his/her body image and various elements of his therapy, including wearing compression garments.
Adjust your support and interventions during adolescence.

Pediatrics is the only area that offers an interdisciplinary approach to lymphedema management. Take full advantage of these valuable resources by clearly communicating your needs and challenges to the team.

Resources

Contact details for the CHU Sainte-Justine Pediatric Lymphedema Clinic

The journey of parents of a child living with lymphedema

Videos

Lymphedema genetics and its implications for diagnosis and patient management

Management of primary lymphedema in pediatrics

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