Daughter born with congenital lymphedema - any advice or information please would be a massive help.

[lacey89]

Hi my daughter is 8 months old now and has what doctors believe to be congenital lymphedema. Doctors cannot give a actual reason as to why she was born with this. She has started crawling and is now becoming more mobile and is starting to want to stand and cruise on furniture however we are finding it very difficult to find shoes that will even go onto her foot. Has anyone else experienced this with their child and where have they bought shoes from??Also what have other parents done for their children cope and if there is anything we should avoid??. We do have an appointment with a professor in may to have her feet looked at but would really love some advice from someone who has maybe experienced it all ready. Doctors seem a bit out of their depth when looking at my daughter and a bit like they are unsure of what to say or tell us.

Thankyou to anyone who can help.

[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 keep the swelling down. I would know where to get shoes as he doesn't suffer In his feet however his professor is a book of knowledge and I'm sure I could get some answers for you. Are you in England? If so what prof are you seeing?

[lacey89 in reply to xb3ckyx]

Hi thanks for your message -its quite uncommon for boys to have this isnt it? Did the surgery go successfully? I do hope so!!

Is there no surgery that can be done for his hand? Is it just his hand or his arm aswell and is there a chance of it moving up into his arm? We are due to see professor peter mortemor in st georges as we live in london sort of - just the outskirts in kent! Where are you guys based? X

[littlelymphiesmum]

Hello, my daughter is now 2 and born with the same. she has it in her legs and feet but mostly on the right. We have no idea why...looks like something spontaneous in the womb. We are having genetic testing done at St Georges but so far nothing seems genetically wrong. We would really like to have the lymphoscintigraphy test done to see where exactly her issue is within the lymphatic system but they won't do that until she is old enough to lie still.

Shoes and socks have been our nightmare! We couldn't find shoes until she was 20 months! And that was a total fluke pair in a supermarket with velcro straps that didn't really fit properly. We have since discovered converse as we can take out the laces and put them back in to suit her right foot. Though I know your little girl is too young for converse.

I know you must be feeling very frustrated, but if she doesn't really need shoes yet I would maybe hold off until she is properly walking.

Do you see a lymphoedema physio? Do you carry out MLD, moisturising etc? Not sure if you can send a private message on her but happy to give you my email

[lacey89 in reply to littlelymphiesmum]

Hi, thanks for your response- was your daughter born with the swelling already in her legs or has this gotten worse and travelled up her legs since she was born? We dont really do anything to her feet as we was advised to leave them until we had seen someone who knows what theyre talking Bout and looking at! We have found leather sock like shoes that you just pull on from amazon called dottyfish just so she can explore crawling around the garden without cutting her feet or something!

Weve heard thT it takes children alot longer to walk when they have the swelling?? Did you find this with your daughter? We are currently under st georges aswell - we Are due to be seen on the 21st may! We havent heard about gentic testing?? Does that mean if me or my partner carry it any children we will have will then get it? Getting your email would be great! Would be amazing to be in contact with someone who has been through this! X

[littlelymphiesmum in reply to lacey89]

Hi, I think I have just messaged you privately with my email. My daughter was born with puffy feet and legs though as she has grown it is mostly in her right leg and foot but we are managing great with a combination of treatments - MLD at least twice a day, compression tights, moisturising and ecercise including swimming. We see our lymphoedema physio at least once a month and she is fab. Brill you have found some type of shoe for protection as I was always terrified she was going to cut herself until we got her shoes.

Our daughter had genetic tests done to see if she had a faulty gene causing the lymphoedema but so far no link has been found. Myself and hubby have had blood taken too but no results as yet...it is a VERY long process. We have a 5 year old son too and he is totally fine so we think it was just a spontaneous thing with our daughter so don't be worrying too much

Hope this helps but send me an email and we can chat more xx

[naominorthenellis]

hi lacey89. You should contact Denise Hardy who is involved with treating children with lymphoedema there are others I am sure but i understand that she is very active in this area. If you send me an email i will let you have her details as I am not sure that i should post her email address on this site without her permission! [e-mail] Otherwise you will find her through the Lymphoedema Support Network lymphoedema.org

[lacey89 in reply to naominorthenellis]

Hi thanks i will send you a email now x

[Rebec]

Hi lacey89,

I looked up on the internet and found a page which might be of help on many levels, including, I hope, with proper shoes. Have a look at International Lymphoedema Framework: Care of Children with Lymphoedema. It's a PDF page. May I suggest that she learns to swim as soon as possible as swimming might enable her to keep the lymphoedema in check.

[lacey89]

Thankyou so much i will definately look into this! Many of the doctors we have seen seem very uneducated in this area which is very frustrating! X

[kharimata]

lymphedema.pitt.edu/

This is a very informative link to genetics and le. i was told that i have 50/50 % chance to pass it on to my kids but that doesnt mean le will occur. it has higher chance to occur in girls. in my famly my grandmother mother and me have it but time to occur and the way it occured was always different. it is not predictable. i remember they have given me some names when i have made contact with Pittsburgh, maybe it is good to have contact with them ? genetic research will be the road to a cure so it is very promising to see effort is made in these field. i am hopefull that we will benefit of it, in the mean time we need to find professional caretakers and doctors to keep it under control...Swimming is very good or simple movements in the water ...take care!

[J19o12d2005]

Hi lacey89 I was born with congenital lymphadema in 1964 now 50 and in same place go to surgical appliances for shoes I had them made until I was 10 now I make my own I'd love to help you in any possible way boost her confidence that's what my pArents done we are just normal children adult now

J19o12d2005