Hi folks I'm new here, my 10 year old has primary lymphadema and also suffers from a few other things, are there any other parents on here ?

[Claireeiera]

Just wondering if there are any parents on here with kids who suffer ? X

[marykatesmum]

Hi, my 2 year old daughter and 5 month old son both have milroys disease but my 2 older boys are not affected at all...they also suffer with gastric reflux eczema and my daughter struggled with slow development with gross motor skills but is doing great now! Have u a boy or girl xx

[suzie_danger_girl in reply to marykatesmum]

Hiya, I have primary le and have digestive problems like this. They have been no help at all to me on it, might I inquire, what solution dis they suggest for the acid reflux problems. Sometimes I literally find it hard to swallow food.

[le49]

Hi I'm the mum of a 9 year old boy who has had lymphoedema from birth, and has adapted to having the condition very well and knows it's part of his life forever, it has also spread to other parts of his body, but he's a fighter and gets on with it, are you a member of the LSN as it is free membership to kiddies, and they are holding another lymphaletics next year on the 13th Sept 2014 in Sheffield so children can meet others with the same condition. I've just attended the LSN patient conferance in Birmingham and was a speaker on the day about what it's like being a parent with a child with lymphoedema, but we were the only parents there, if you need any info on anything just ask.

[Claireeiera in reply to le49]

The nurse that my daughter mentioned they do the lymphatletics, I think that is a fantastic idea x

[le49 in reply to Claireeiera]

It's great the last one was in Sept 2012 and both my son's loved the day and it gave the parents a chance to talk to other parents about what their going through.

[Christina38]

Hi Claireeiera!

Yes! My 12 year old daughter was diagnosed with primary lymphoedema in her right leg in October 2013. She was prescribed with a compression stocking and we are so pleased that she can now wear shoes a size smaller and her shoes fit both her feet. She has had an insole in one shoe for many years. Her aching leg makes getting out of bed even more difficult, but she cycles to school and the cycling helps her compression stocking to work. We are trying to "be strong" and exercise. Our local Lymphoedema Clinic is excellent. My daughter would like to meet other sufferers and I am going to email the LSN about this.

Regards

Christina

[novembergirl]

My 16 year-old son has had lymphoedema in both legs since birth, one worse than the other. He is also a type 1 diabetic. He gets on very well, neither condition has held him back really, although he finds the lymphoedema more of a trial (I think because it makes him look different). He wears compression garments but we've more or less dispensed with anything else - eg. wrapping or MLD - partly because of lack of time (he's away from home in the week) and also because he just wants to get on with life and engage with all this as little as possible. He is active and happy My son's garments are toe caps, full length stocking with shorter stocking over. Quite a bit to get on in the morning and a bit warm in the summer, but they really do help.

[Claireeiera]

Omg, thank you all for replying to me, my daughter is 10 years of age and also suffers from Klippel Trenauny Syndrome ( her legs are different lengths, she has varacous veins and her leg is larger than the other) she was given a half leg stocking from her vascular surgeon a year ago and told to wear it all the time, except for bedtime, but after suffering pain in her upper leg, she was then diagnosed with primary lymphadema and told not to wear the stocking as it was keeping the fluid trapped in her leg. The nurses that she sees are fantastic and let her choose her own colour of full stocking (bright pink lol) and gave her cream and showed her how to massage her leg to try to shift the fluid. It affects the left hand quarter of her body, lower back, bum, upper and lower leg. I am new to all of this so please excuse me x She copes very well but after visiting the vascular surgeon yesterday they have said now that the femral artery in her leg that is causing the vein problem may also be putting pressure on her lymp glands ? I am just baffled as to why they didn't diagnose this before as she has been the same from she was small. Does anyone see a Lymphedema specialist or is it just the nurses ?

[Christina38 in reply to Claireeiera]

My daughter's foot gradually became more swollen as she got older, then the swelling spread to her ankle and calf. She was diagnosed with lymphoedema aged twelve and it can be called teenage lymphoedema. As your legs grow longer, symptoms show themselves to a greater extent. My daughter has only just been diagnosed. She was diagnosed at a Lymphoedema Clinic by a Nurse Consultant who is very knowledgeable and experienced. We are very lucky in that respect. Lymphoedema in itself is a complex condition and it must be more difficult for you if your daughter has another condition and is seeing another specialist. I hope the two are liaising with each other. More importantly, I hope everything is being explained to you and your daughter so that you understand. The LSN is very helpful. I hope this rambling helps. With best wishes

[Similia in reply to Claireeiera]

My 8 year old son has just been discharged from hospital today following IV antibiotic treatment for cellulitis in his left leg, he has primary lymphoedema. Whilst we were there the paediatrician measured his legs and his left leg is larger and longer than his right by 2cm. We knew it was larger but not that it was longer. I also noticed recently that he has developed a prominent vein in his left calf. When I read your post I did some more reading on Klippel Trenauny Syndrome and apparently there also has to be a port wine stain to confirm the diagnosis. Can I ask if your daughter has a port wine stain and what led to her diagnosis? Many thanks.

[LymphSuppNetwork Partner LSN]

Hi Claireerie

A great place to meet with other parents and for children affected by the condition is the lymphaletics there is a link to info about the September 2014 event here

lymphaletics.weebly.com/ind...

We attended the last one and it was a great day. Also don't foget the LSN offer free membership to children and can provide info packs for schools and loads of other stuff to help you and your child just ring the office on 020 7351 4480

[ashley0927]

Hi! I have a 5 year old daughter who was diagnosed with primary when she was 4. She has been seeing a lymphedema doctor here in our area and he is wonderful! She wears a custom fit compression stalking from when she wakes up until she goes to bed. Nothing worn at night. They really have no idea what caused it. (Which is SO frustrating) She has some autoimmune issues and hearing loss as well so it could be a number of things. The plan is just to manage it. I too would love to get in touch with parents like me and I'm so glad I found this!!

[novembergirl]

Very fascinating to read about gastric reflux/autoimmune issues. No-one else in my family has lymphoedema as far as I know, but three have type 1 diabetes which is an autoimmune disease, one lost all his hair as as a teenager due to an autoimmune condition, and another has severe gastric reflux (due to a malformation at the bottom of oesophagus I think).

[xb3ckyx]

Hey, my son was diagnosed with congenital lymphodema at 3 months old. It was caused by a condition called primary intestinal lymphangiectasia. Although there was no idea why he got that and was born with it, after ruling out it was not genetic. My son suffers mainly in his hand and genitals. He had surgery on his genitals but his hand is still swollen. We use MLD and bandaging on his hand which helps keepswelling down

[spf123]

Hi Claireeiera - my 10 year old daughter also has primary Lymphoedema - her left leg and foot are swollen, and her left hand swelled up a few years ago but we managed to get it down for now. She also has a number of other medical issues, but the lymphoedema is the most upsetting. Her overall condition is undiagnosed.

We attended the children's Lymphaletics event in Sheffield last year and it was excellent, and are going again this year. I would really recommend it, as it was very helpful for our daughter to see other children wearing compression garments and with swollen limbs.

We are based in North London, and I would love my daughter to be able to get to know other children, especially around her age, who have the condition. She feels very self-conscious about her compression garments, but is also very brave like most kids with medical conditions, and just tries to get on with life and keep up with her peers.

It is a scary condition, because its progress seems to be impossible to predict, but hopefully having contacts with other parents through a site like this (and the Lymphaletics) will be helpful to you. x

[Christina38 in reply to spf123]

My daughter (aged 13) and I are booked to go to Lymphaletics 2014. It will be our first time. I attended the LSN Conference last year, but my daughter has yet to meet any other children with Lymphoedema. Looking forward to meeting you and your daughter in September. Does your daughter live in trousers like mine? (To be honest, so do I.) At least they can wear trousers to school! With best wishes