Management and Treatment

Frequently asked questions awaiting replies:

• What measures can I take to help prevent infections for my child?
• What measures can I take to help prevent infections for the child?
• How do I know if the compression is hurting my child versus when it is doing its job?
• What are compression garments for?
• Is athletes foot a common problem for those with lymphedema and how can we treat them?
• What is bandages for?
• How do I know if the compression garments/bandages hurts or is distressing for the child?
• What is manual lymphatic drainage (MLD)?
• And can I learn how to do it?
• Do the child always need to wear the compression?
• When can they go without?
• How do I recognise cellulitis?
• What is cellulitis and how do I recognise it?
• How can I access treatment for my child’s recurrent verrucas?
• Are verrucas a common problem for those with lymphoedema and how can we treat them?
• What kind of treatment is available for my child?
• What are the different type of treatments available for lymphoedema?
• What exercise can my child do/is there some exercise that can make it worse/better?
• What physical activities are recommended for a child with lymphoedema?
• When lymphoedema does not respond properly to treatments (e.g. bandaging) what can be done? Change technique?
• What can I do if the oedema does not respond to the treatment?
• Is there any drug to help lymphoedema?
• Are there any pharmaceutical treatments for lymphoedema?
• Questions on made to measure/orthopædic shoes…how and where to get them (application process)
• Are there any support groups for parents of children with lymphoedema?
• Are there any support groups for children with lymphoedema? Online/locally?
• Surgery for children – what age is appropriate (is there a too young stage?)
• What kind or surgical options are available and at what age is it appropriate?
• As our first child has lymphoedema, how likely is it that any other children we have will also have the condition?
• We have one child with lymphoedema, how likely is it that we could get other children with lymphoedema?
• Will my child have to wear bandages/hosiery for Putting the stockings on my child is difficult. Is there any practical help for this?
• Are there any tips or devices to aid putting on and take off the compression garments?
• How can we get supplies of hosiery when our child needs it?
• How can we ensure schools understand our child’s condition?
• What specialist should I see for treatment of my child?
• What are the different specialists that can diagnose and treat a child with lymphoedema?
• My child does not always want to wear their compression garments, is it ok to have “days off”?
• My child does not always want to wear their compression garments, is it ok to have “days off”?
• 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. At what age can the child begin to take on some of the self-care activities such as skin care?
• Mental health support available (where/what)
• What kind of mental health support is available and how will I know when the child needs it?
• How can swelling in the pelvic floor and on the hip be kept down? and hips?
• Are there any examinations that can help with identifying and/or improving treatment?
• How can I deal with other peoples opinion and “good advice” about my child’s lymphoedema
• How can I manage with other peoples opinion and “good advice” about my child’s lymphoedema
• From how old can I start to bandage my child?
• From how old can I start to bandage my child and how will I know that it needs to be bandaged?
• How often should elastic stockings be replaced/changed?
• How many garments does the child need and how often do they need to be changed?
• Given the natural reticence of young people to treat themselves methodically, what treatment/aid is most appropriate to be intransigent with them?
• How can we motivate a teenager to be more involved in their treatment?
• Risk of developing genital oedema What are the risks of developing genital oedema and what specialist can help?
• Is there any news in the study of the genetic component of the disease?
• Why are specialist services so far from our local area?
• What is a specialist centre and where can I find it in my country?
• Why are there so few experts in the field of lymphoedema causing us to have to wait a long time for diagnosis?
• Why is lymphoedema not well known and why are there so few doctors who knows about it? How do you deal with itching caused by bandages – it is distressing to the child?
• How can I manage itching skin from the compression bandages or garments?
• Why are children not offered preventative MLD?
• Are there websites that could tell our child more about lymphoedema?
• What resources are available to learn more about lymphoedema?
• Are there any easy and effective self-lymphatic drainage techniques that can be performed for good lymphoedema management?
• How to manage elastic stockings in children going to school who are not autonomous to manage it on their own?
• How can compression stockings be managed in nursery?
• Can the child learn to perform MLD?
• Who can teach me to learn to bandage my child?
• Can we get funding for MLD?
• Can we get reimbursement for manual lymphatic drainage?
• 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?
• Can we pay for extra hosiery if our child needs it?
• What is ascite and how is it treated?
• Treatment of the pelvic floor and hips
• Treatment of toes
• Treatment of fingers
• Treatment of hands
• Treatment of genital edema
• Treatment of trunkal edema
• Compression of hands on smaller children, how is it done and how to “move with the growth” of the child?
• How should compression garments be washed and maintained?