Call the LSN helpline 020 7351 4480 open 10-4 Monday to Friday and ask them to put you in touch with Denise Hardy - she is a nurse practitioner (and LSN Advisor) and has a lot of experience with children born with lymphoedema. She is also involved with families who have children with the condition.

Arr poor little boy, bless him. Hope you get some answers and get something sorted for him. Keep us posted, it’s bad enough for adults to have never mind baby’s.

Do not worry I was a new born child with lymphoedema in the 1980s when certain gene mutations had not been discovered. No one could explain what I had. It was only diagnosed when I was 13. I was then operated on but today we know that was unnecessary.

If you are at st george’s Then ask to see Dr Grant in dermatology.

Knowing what gene mutation your child has is very important a so,you are doing all the right things.

Life has been great and lymphoedema has not stopped me doing anything.

Hi Slavka you are not alone there are parents with little ones who have Lymphoedema. You will get some responses from parents here and if you are on Face Book there are support groups for parents which are full of information - search Lymphedema and parents (spell it without the o as Americans leave it out). You are in excellent hands at St Georges!

Hi Slavka,

You are most definitely not alone. I have two children with primary lymphoedema. Both of mine were diagnosed with fetal hydrops at birth and both were very swollen. My daughter had infusions to remove the fluid and left hospital without any swelling. My son was left and I was told he was just a very big baby. This wasn't linked to lymphoedema until some years later. So it's good that the doctors have a good understanding for your little ones condition so early.

Life for both of my children (now 10 and 13 years) is great and genuinely happy. They need to take some extra precautions when doing high risk activities but this has become normal so they have not been held back from doing anything.

St George's have provided great care and advice for us. Don't worry about the delay in hearing regarding the genetic test. These things are not always straightforward but St George's are determined to find the genes and keep plodding on. They usually update us at our yearly appointments.

There is a great meeting that happens every two years called lymphaletics. The next one is September 2018. It's a fun day for children across the country with lymphoedema. They put on lots of fun activities for the children and really spoil them and there are sessions for parents to help with advice from other parents, children and doctors. There are also companies there showing all the products available for lymphoedema. But the best thing is just chatting to other parents and realising you are not alone. Gillian Craig organises it (gilliancraig@nhs.net) and I would definitely recommend contacting her.

Best Wishes

My mother is still worrying about me and my lymphoedema. I have had it since I was 11 years old and I am now 62 and she is 87. You will be getting great treatment at St George's. As Elena123 says, life has been great and lymphoedema has not stopped me doing anything. Having said that when I was at school and I didn't want to do PE/ games I used to say my leg hurt so I couldn't. It didn't but no-one could argue with me.

OMG I'm so happy to see all these replies! All of you are fantastic! Thank you for giving me a hope for a normal life to my son. Until now I felt left alone with the problem but you guys showed me that there's so many people happy to help.

Just one more question: my son doesn't walk or crawl yet due to his young age. I do SLD together with lots of leg movement and exercising. After that I see huge improvement and can tell his leg is much much smaller. But then when night comes I have to remove his compression stocking otherwise he cannot sleep and cries alot. Next day early morning his leg is massive and hard again. I feel like whatever we achieve during day time is wasted because of the night without stocking. There is no point to elevate his leg at night - he is just 5 months old. How do you deal with night? Any ideas what we can do to keep the swelling at minimum level at all times?

Thank you all !!!

I'm so sorry to hear this, and very surprised too! Like you, I'd never heard of this condition, until I was diagnosed as being a sufferer at the beginning of this year. It seems us Lymphies are in a group which doesn't seem to get any airtime at all, and this is a horrendous state of affairs! I can only assume that it's because it's not considered 'life threatening', although the physical and mental effects on us, and the complications which can arise from it can be - if not directly - then indirectly responsible for our demise at a much earlier date?

It seems we are a much bigger group than it would first appear, and far more research needs to be done to a.) eradicate the root of the problem and b.) improve the quality of life for us sufferers?

God bless you and your little one, who will have a difficult path in life.. xx

My son was born with Lymphoedema, he is also a patient at St George’s hospital, you are definitely not alone.

When my son was born his arm was swollen and purple and was whisked off for tests, at first they thought the cord had been wrapped around his arm in the womb and even ruled out a heart problem.

My son had a mri scan, they will give your son an anaesthetic but it’s to keep him still while they do the scan, he will be fine and back to you soon after.

Did or does anyone else in the family past or pesent have swollen limbs as in my case I was told it was genetic in the genes but having an operation in the limb made the swelling worse

Poor boy... Dr Mansour is brilliant - our Dr for all 4 pregnancies, losing 3 to arpkd/CHf... I have lympadema due to cellulitis past 11 years... Good luck x

Omg sweetie you sound how I felt. I’m happy to chat. I had no one and felt so alone but my son is two in January and I have learnt more than Doctors x

Hi slavka I’m now 23 and I was born with left leg primary Lymphoedema, after being with my partner for 6 years I recently decided to go and see a geneticist to see if my Lymphoedema could be passed on to my own children, unfortunately it was confirmed I have the VEG F3 gene which means if I have children it’s a 50/50 chance per child that they will also have it, this is the latest I have heard and I am awaiting to see the genetics to discuss this, with your son 100% stick with the compression stockings and if bandaging is offered when he’s older definitely go for it, as a child I didn’t stand the tight stockings or bandaging very well and would often get upset and not want to wear them but my mom persisted, without this early on treatment my Lymphoedema could be so much worse now, it’s important to moisturise the foot and leg everyday to keep the skin in good condition to prevent any infection as this can cause complications and one of the best treatments is manual lymph drainage once referred to a Lymphoedema nurse they will teach you how to do this for him, unfortunately at the moment Lymphoedema is something for life but if the condition is well managed your son will be able to grow up and do what all the other kids are doing, the only time it’s stopped me is in my career path, I trained to be a nurse but unfortunately the long shifts on my feet worsened my Lymphoedema but apart from that I’ve had a life quality like everyone else 🙂 i hope this helps x

It could be Milroy's Diease. If so it is genetic and causes lymphodema, can be in legs ( most often) or arms and males with it sometimes have hydrocells in bag of privates. surgery takes care of that completely and no problems having chilren . it is a disease of the lymphatic system didderent degrees of problems. massage when you especiallt hep this, always massage up on legs never down. I hope this is not it, it is rare but in my family familiar

Hello, our daughter was diagnosed with probable Lymphedema already at her 20 week scan, she's now three months and we have an appointment at st georges this month. Like you, we'd love to get in touch with other families with a child with lymphedma, we're trying to do the LD massage morning and evening but would be so greatfull for advice /tips on how best to manage the condition. ( ps wierdly our user names are almost the same! I say wierd because I did contact another family whose daughter had almost the same name as ours too) in anycase would be great to hear back from you!