Parents

This is the page for parents’ and carers’ FAQs

Causes, Diagnosis & Progression

1. Can lymphedema be cured definitively?
2. How can we ensure a smooth transition to adult lymphedema care later in life?
3. What is lymphedema?
4. What could have caused my child’s lymphedema?
5. Is lymphedema genetic?
6. How is lymphedema diagnosed?
7. Where can we find specialist lymphedema care?
8. Can lymphedema be prevented?
9. Can lymphedema be prevented from progressing
10. What triggers lymphedema to worsen

Guide for answers

• Are there many children with lymphoedema?
• What changes should we expect as our child grows?
• Can lymphedema spread to other parts of the body?
• How will lymphedema affect my child’s growth and development?
• What is the long-term outlook for my child? ok
• Could lymphedema affect my child’s mobility? ok

SKIN AND NAIL CARE, INFECTION & COMPLICATIONS

1. How should we care for our child’s skin and nails?
2. What can we do to help prevent infections ?
3. What signs of infection should we watch for?
4. When should we seek urgent medical attention?

Guide for answers

• How do you deal with itching caused by bandages?

Treatment 

1. What happens if lymphedema is left untreated?
2. What specialist should I see for treatment of my child?
3. What kind of treatment is available for my child?
   • At what age should treatment begin?
   • My child does not always want to wear their compression garments, is it okay to have “days off”?
   • From what age can bandaging  start?
   •  Is manual lymphatic drainage recommended for my child?
4. Does my child need compression garments?
   • Who will measure my child for compression?
   • Is over the counter  OTC compression as beneficial as make to measure (MTM)?
   • How often should compression garments  be replaced?
5. Can we get funding for treatment
6. Is there any drug to help lymphoedema?
7. Are there surgical options for consideration?
8. What new treatments or research developments should we be aware of?

Guide for answers

• My child does not always want to wear their compression garments, is it okay to have “days off”? ok

SELF-MANAGEMENT AND INDEPENDENCE

1. When is it time for my child to become involved in their own care?
2. Can self-lymph drainage and self – bandage be taught for home use ?
3. Are there tools to help put on (don) and take off (doff) compression garments

Guide for answers

• Are there any easy and effective self-lymphatic drainage techniques?

LIVING WITH LYMPHEDEMA : SCHOOL, HOLIDAYS ,SPORTS & NUTRITION

1. Can my child participate in sports and physical activities? Ok
2. Should teachers and caregivers receive special instructions?
3. Is there any special nutrition for lymphedema?
4. What exercises are most beneficial for children with lymphedema?
5. Are there any activities my child should avoid? ok
6. What kind of food is better or worse for lymphedema?
7. Are there any foods or drinks that should absolutely be avoided?
8. Are there any restrictions on travel, especially flying
9. What precautions should we take during hot weather?
10. Is good footwear important for my child?

EMOTIONAL, SOCIAL & PSYCHOLOGICAL WELL-BEING

1. Are there support groups for children with lymphedema and their families?
2. How can we support our child’s emotional well-being?
3. How can we improve adherence for treatment and garment?
4. How can we help our child cope with questions or comments from peers?

Guide for answers

Stakeholders link ????
LymphQOL
Self efficacy questionnaire
Camp film
Other video

Other resources

Films here https://www.lympho.org/films
Living with Lymphœdema
Finding the right diagnosis
What investigations?
Finding the right treatment
What are Certified Lymphœdema Therapists?
Independence for your child/young person
Support groups and organisations
Social media
Setting up a camp
Newsletter – LYMPH4PARENTS

Each of the above and many more requires content

How can we monitor whether treatment is working?