FAQs

The book Care of children with lymphoedema addresses many of the concerns faced by carers of those who suffer with lymphoedema heling to understand the condition and how it may be effectively managed. Many other questions are raised which are outside the scope of that book to provide answers.

Staff involved in the care of children and their families should be prepared to answer many questions. Naturally, many will relate to the effect of lymphoedema on their lives, so answers will be unique to that family. However, the most frequently asked questions are presented here:

• Are there many children with lymphoedema?
• As our first child has lymphoedema, how likely is it that any other children we have will also have the condition?
• Why are specialist services so far from our local area?
• Why are there so few experts in the field of lymphoedema causing us to have to wait a long time for diagnosis?
• I understand that lymphoscintigraphy may help us understand the cause of my child’s lymphoedema but will it help in what treatment he will receive?
• Will my child have to wear bandages/hosiery for
• How do you deal with itching caused by bandages – it is distressing to the child?
• Putting the stockings on my child is difficult. Is there any practical help for this?
• How can we get supplies of hosiery when our child needs it?
• Can we pay for extra hosiery if our child needs it?
• Our daughter is unable to buy shoes in the High Street so they are made at the hospital. Can she have more than one pair at a time?
• Can the shoes provided by the hospital be more fashionable?
• Where can I buy clothes that will fit my child and that are age-appropriate?
• Why are children not offered preventative MLD?
• Can we get funding for MLD?
• What measures can I take to help prevent infections for my child?
• How do I recognise cellulitis?
• How can I access treatment for my child’s recurrent verrucas?
• How can we ensure schools understand our child’s condition?
• How can we help our child who is being bullied at school because of the hosiery/shoes that he wears?
• Are there any support groups for parents of children with lymphoedema?
• Are there websites that could tell our child more about lymphoedema?

• Where can my child get a diagnosis? (locally/nationally)
• What specialist should I see for a diagnosis of my child?
• What specialist should I see for treatment of my child?
• What kind of treatment is available for my child?
• Should I/my child get/can I get a genetic test for my child/me?
• How can I deal with other peoples opinion and “good advice” about my child’s lymphoedema
• Questions on made to measure/orthopædic shoes…how and where to get them (application process)
• What exercise can my child do/is there some exercise that can make it worse/better?
• My child does not always want to wear their compression garments, is it ok to have “days off”?
• How do I know if the compression is hurting my child versus when it is doing its job?
• From how old can I start to bandage my child?
• When is it time for my child (at what age) to be involved in their own care? Take on compression garments by themselves….skin care etc.
• Mental health support available (where/what)
• Compression of hands on smaller children, how is it done and how to “move with the growth” of the child?
• What kind of food is better or worse for the lymphedema? (especially for those with need of MCT diet this is an issue as there is not much information on a practical level)
• Surgery for children – what age is appropriate (is there a too young stage?)
• Management of genital lymphedema
• Risk of developing genital oedema
• Is there any news in the study of the genetic component of the disease?
• Are there any easy and effective self-lymphatic drainage techniques that can be performed for good lymphoedema management?
• How often should elastic stockings be replaced/changed?
• Are there any foods/drinks that should absolutely be avoided?
• How can swelling in the pelvic floor and on the hip be kept down? and hips?
• Since I have not found a genetic match, what tests could be performed to understand the nature of my lymphatic dysfunction? And assuming we can understand it, how much more effectively – compared to the usual and generic lymphoedema management practices – could the oedema be treated?
• When lymphoedema does not respond properly to treatments (e.g. bandaging) what can be done? Change technique?
• Is there any drug to help lymphoedema?
• Given the natural reticence of young people to treat themselves methodically, what treatment/aid is most appropriate to be intransigent with them?
• How to manage the elastic stocking in children going to school who are not autonomous to manage it on their own?

We cannot provide comprehensive answers to all of these questions. The answers to some of the questions also vary from country to country as the health care systems differ from one another.

If you would like to answer the questions from your own perspective as a parent, carer or professional, please do so in the comments field below. Your comments and stories will be published after suitable moderation. Where we find we have several comments on any of the questions above we may add new pages specifically for those questions.