8 year old daughter secondary lymphoedema...ARGH!

Yesterday we saw a vascular surgeon who has diagnosed secondary lymphoedema. She has had an increasingly swollen foot over the last 5 months. We saw GP's, had blood tests, paediatrician, more blood tests, X-rays, MRI, saw orthopod, then Vascular surgeon. He says secondary as she had cellulitis at 8 months which may have damaged the lymphatic vessels.

I know nothing about it and am frantically reading everything I can about it. we are awaiting referrals for compression something's, too small for stockings, and manual lymphatic drainage training. Not looking forward to massaging every night until she's old enough to do it herself.

Will she be able to wear heels and short dresses when she goes out??? Lots of silly questions in my head. :(

All advice welcome, thanks in advance

7 Replies

  • While she is young dress her as you would normally. When she reaches her teens she will decide how she feels about her attire. I for years lived with swollen legs and people telling me they look sore. It's my choice to wear pant and maxi skirts/dresses , as I then feel confident and normal.......if that makes sense! Use doublebase cream to moisturise skin which is important to protect the skin at all times. LSN are brilliant for information , the network to will help with support. Good luck

  • Contact the LSN and ask.the to send you information about lymphoedema in children - she is not tooyoung for compression - I have seen toddlers with lymphoedema - it would just need to be measured and fitted correctly. I have several young women who developed lymphoedema as children, and they have never let the condition stop them doing things. There are also new treatments becoming available that may be appropriate for your little girl at some point. Ring the LSN on Monday - they are very helpful.

  • If possible don't settle for being prescribed a compression garment and 'self mld'. Use a fully qualified MLD practitioner who will use it correctly and be able to advise you on best care for your child.

  • My 2 year old daughter was diagnosed with primary lymphoedema in her legs and feet (though mostly her right) when she was 5 months old. We see her specialist Lymphoedema Physio at least once a month, carry out lymphatic drainage on her at least twice a day and she has been wearing compression tights since earlier this year (nice normal looking ones!) She is in fantastic shape, is a completely normal 2 year old running around constantly and getting into mischief!! The main thing we have tried to ensure is that she doesn't miss out, leads and normal life and that her condition isn't 'who' she is.

    I have a blog you may find useful - littlemissluciaslymphoedema...

    We have the same worries when she gets older but hopefully we will be able to deal with them when we get there x

  • Compression stockings for children are made to measure and need to be replaced more frequently than for adults to keep up with their growth. Investigate your local lymphoedema service where your daughter can be measured and fitted. Your GP may have to apply for an Individual Funding Request from your local Clinical Commissioning Group if you do not have a service in your area. Hosiery is on prescription and one company do a range of bright colours. Stockings, skin care and running around in the fresh air will go a long way towards self-management.

  • As previously mentioned contact the Lymphoedema Support Network (LSN). lymphoedema.org. They have a website and a telephone help line. They will help you get the best support you can for your daughter (and yourself). My lymphoedema first showed when I was 12 (below knee). I even ended up in hospital for a month having tests and eventually got let out as we were going on holiday, without a diagnosis and as a "medical mystery". That was decades ago but diagnosis still has a way to go for many today! My mother still worries, in fact worries far more than I do. I would be lying if I said it hasn't affected the clothes and shoes I wear. Having said I reckon that it hasn't stopped me doing what I have wanted to do. The Internet also makes it much easier to share fashion and clothing/footwear tips. Please do contact the LSN. Best wishes.

  • I have a very similar story to the first reply (bigleg) in that I have suffered with this condition from an early age but that was way back in the 1960s. Things were so different then. I went through school with no support or understanding of lymphoedema and was told that I just had to live with it and I felt a bit of a freak. Eventually (within the last ten years and with the help of the LSN) I found the right sort of compression garments and my condition (left foot & lower leg) is under control.

    My advice would be to find the correct garments as soon as possible. Accept the condition and get as much advice as possible, hopefully your daughter will not grow up with a complex about it. It is possible to wear trendy clothes and fashion shoes if you choose carefully. There is so much openness and helpful support - as in this forum - nowadays

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