Milroy's Disease - a parent's view
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When does a parent stop worrying.........?
I decided to write about my son's problem for two reasons; firstly when he was first diagnosed with his condition even the Doctors had to look on the internet for information! And secondly because as every day passes it is a day when I can sigh with releif that he has not done himself any damage, that he is developing properly and that the treatment we are carrying out on him seems to be helping.
So what is so wrong with him?, you ask. What could possibly be so terrible for you?
He has what?
Milroy's Disease. To put it into medical terms congenital lymphoedema. Basically his lymphatic system in his lower right leg and foot, and left foot either does not exist or is very reduced. It means that the fluid that is normally moved from the body stays there making the limbs swell. If you have been pregnant and got fluid retention in your legs then you know what it is like. But he will be like that, forever.
When he was born he was absolutely perfect. The midwife put him in my arms for a few moments, then began the routine checks and saw that he had very swollen feet and right leg. She called the consultants but they did not know what it was either. My little baby was only a few hours old when they took him from me to run tests. They eventually bought him back to me, only to take him back to neo-natal for 'observation'. He was now 15 hours old and we still had no idea what was wrong with him. Still, he made his feelings perfectly clear on the matter. He would scream and scream until I went there, then he would quieten at the sound of my voice.
It wasn't until that evening when one doctor said he thought he knew what it was, but that he had never seen it in an infant. He told me about Milroy's disease, what it was and basically how little they knew about it. I had a quick look on the Internet and what I saw scared me silly! Still, after seven days we were let out of hospital (I had pre-eclampsia, another reason for keeping me in) and told that someone from paediatrics would contact us. They didn't! I had to chase them until someone decided to take Jack's case on. I think they were all a little afraid to look at him, although it is a teaching hospital, as they didn't know what they were facing. We saw several doctors and received some very useless (we found out afterwards) information until eventually we were sent to dermatology, who refered us through to a lymphoedema nurse. They normally deal with cancer patients who have had the lymph nodes removed and suffer from lymphoedema afterwards.
At last, some information.
Then we actually found someone who had dealt with lymphoedema and could start to advise us. Firstly we were told to discount all of the things we had been advised to do by the other doctors; raising his feet, hard massage, putting on constrictive bandages - they could actually do him more harm than good! Lymphoedema is managed with the following things; manual lymphatic drainage, moisturisation, exercise and support stockings. As Jack was only a few months old the last two didn't count but we were advised on the the massage and moisturisation as follows.
Manual Lymphatic Drainage
This is the name for the special type of massage used on patients with lymphoedema. Basically you have to assume that the lymph nodes situated around the site of the swelling do not work so you have to ask another set to drain the collected fluid. Lymph nodes are found in the groin, the armpits, neck, chest and stomach. First you have to clear the ones you want to drain; for Jack it is under the arms. You start just lightly brushing the chest and back with your finger tips, encouraging the lymph nodes to work. Then, also with featherlight touch, you stroke from the feet up to the hips, trying to clear the fluid from the swollen areas. This has to be done for about 10-15 minutes at least twice a day.
Moisturisation
The other problem with Lymphoedema is that the skin is stretched and taunt and becomes very dry. If it cracks there is a great risk of infection. Therefore we have to make sure that Jack's skin is kept very soft and supple with at least twice daily application of emollients. The places to really be careful of are behind the knees and the crease of the foot and leg. We also have to make sure that his skin is thoroughly dried after bathing as this can lead to skin problems too.
Cellulitis
This is the most worrying part of Milroy's Disease. When lymphatic fluid is left in the soft tissues it becomes a great breeding ground for bacteria. If an injury is made on that limb it is easily infected, leading to cellulitis which if left untreated can cause very serious blood infections. Unlike other children, if Jack gets a cut on his leg or foot he wont need a plaster, he will need antibiotics. The same applies if he gets athletes foot, ingrowing toenails, mosquito bites, cracked heals, blisters, sunburn, insect bites, cat scratches and so on. We have a great list of things that he cannot do without running a risk of infection, such as:
- take a hot bath
- walk barefoot - anywhere
- wear elasticated socks or bootees, or children shoes or slippers
- go out in the sun without very high SPF
- get too hot
He will also find that his legs will become more tired than his brothers do, and he will have less stamina for normal boys things such as running or climbing.
And the future?
Well, we are taking every day as we find it. He is just starting to crawl which is making his knees red and I check them almost constantly for any signs of the skin breaking. I live in fear of the day that he does cut his skin, for once he starts to take antibiotics the next time he gets a cut he wont have so much resistance, and so on. We are fighting to get the best care for him; the most important test to see how bad his legs are cannot be done until he is over 18 months. It means we will soon be leaving Scotland to move to the South Coast so he is near a specialist in London - we cannot face a 600 mile trip to see them if something goes wrong with a toddler in tow too.
It has made me realise that there is something more to life than work, money and everything that that includes. My time is spent making my boys happy, giving them the best I can and making sure they have the best start in life. Jack is very precious; to me he is perfect and I tell him so every day. Because he is different I know he will be a target for bullies in schools and I dread that time. We will try to make sure that he does not feel different from his brother and that he is just right no matter the size of his legs.
If you have a similar problem
My advice to you is very simple. Make a fuss! Keep on at the doctors until you are seen, make sure they remember you, or your child, and make sure they refer you to dermatology or the lymphoedema nurses. It is really important that this illness is not put away somewhere because they don't know what it is. Make sure you are not forgotten or you run the risk of damaging your health in the future.
If you want to know more about lymphoedema please visit the Lymphoedema Society Network site at www.lymphoedema.org.
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Comments
This is a wonderfully written, very touching hub! I've actually read it a couple of times and decided now I could actually comment :o). It needed to sit with me a bit, I guess. I am amazed at your ability to focus on what you want and desire and enjoy your son and life in the face of this adversity. Sure, many have adversities in life, but when it's your child, well, it can be consuming. Thank you for sharing your story and the information and encouraging parents to "make a fuss" when they feel they need more information!!! Right on.
Thanks for your comments; it means a lot that people are actually reading what I'm writing! I cannot get over how important it is for parents to make a fuss if they think something is wrong. Too many children and teenagers have died because things such as menengitis have been mis-diagnosed, asthma attacks not treated and depression not recognised. I have some help but am very much feeling in the dark. Of course my other concern is for my elder son; a lot of the time my attention is on his brother, and Jack will be spending time in clinics and even hospital as he gets older so more fuss will be made of him. It is important to show Tom that he is just as special as his brother and that he is card for just as much. He is already starting to get a bit clingy with me - something he has never done before. I just hope they stay as close as they are now. Thanks for reading my stuff.
I just wanted to add Tjmum, I think your son Tom would still stay close to his younger brother. If he feels that he takes part also in the special attention his younger brother needs. Here in the Philippines, we called an elder brother a "kuya" and the younger ones boy or girl, the "bunso". I mean, this are special terms. But at a young age, it gives you the sense of being responsible for the welfare of your younger siblings. I know it's not that easy because Jack is very delicate. May he can help sometimes in moisturizing Jack's feet. Anything, he can be allowed to do with you. I hope I helped. And I think you are doing a great job already!!!(^^,)
Jack is just gorgeous! He has such a precious little smile, what a beautiful boy! Great job mum, keep on doing so well. He's perfect and it sounds like you are the perfect parents. Good on ya!
You should see him now; he ahs a shock of white blonde curly hair! He's now walking which has opened up a whole new ball game of mischief. Well, we'll just keep taking each day as it comes. Thanks for reading.
i was born with milroys disease so was my mother. My aunts do not have it my brother does not have it only one of my children have it. i just wanted to write you to tell you that in all my 35 years i never had a skin tear, only had cellulitus once and that was from a spider bite. rarely liked to wear shoes loved going barefoot. take baths everyday , extremly hot. as far as you mentioning stamina i think that depends on what hes doing, im am thankful that i can run and walk, i could play anything i wanted. dont hold him back because of this. he will be fine. as far as kids teasing , yes that will probably happen, kiuds called me elephant legs and it bothered me until i figured out that i could kick their butt with these big feet, but also that everyone probably has something wrong with them you can just see ours. please email me so we can chat more and i can tell you about my experiences
also i think that the lymphoedema nurse you see who normally deals with cancer patients is helpful except that type of lymphoedema is completely different than being born with it. all your concerns about skin tearing and cellulitus and not taking hot baths and walking barefoot are probably not going to happen. i found out growing up my legs were actually strong when i should have broke my leg from falling into a empty pool instead i only got brusies because i had a cushion of water to protect my leg. i will take pics if you want to see my legs and my moms and my baby. but basically what im saying is he will be fine, he may not be able to run a marathon but then again why not. we can do anything, just our legs are swollen
hi,i thought id right to u as well,i was born with milroys disease,it scared my mum so much the docters askd her to look back in the family tree to see if any one has ever had it to,but no one has...im 20 now and dont like to look at my legs or feet much,i no that sounds silly but thats me. i am greatfully i even have legs,im out all the time doing eveything wot my friends do and i wear any shoes i want,i dont ever show my feet tho. alot of my friends dont no about it, i dont fell the need to tel them.i do get scared every now and then about doing things,in case somthing happens to my legs but i never let it get to me.the only things my mum told me not to do was cut my legs in case of infections,or wear stockings wen in hospital,but thats it really and i have hot baths every day...ur lil boy is beautiful jus let him no it is fine i think if u start telling a child 'u cant do this or that' then it will be come scary to him.the other thing i dnt do is fly for more then 2half hours in case the fliud gets worse i dnt no were i heard that from,but see what im saying people tell u some thing and i have to limit my self and it mit not even be true,.i do think why me but theres people out there dying i cant really complain.im healthy.i had my baby boy a yr ago he was not born with it,but i was so scared through my pregnacy in case he had it bad or it was over hes body.my feet are swallon and my legs are really skinny but u can see my vains there the only things scared about i do have to keep them safe....its nice to talk to some one who nos wot im going through..try and get back to me if u can thanks sammy.
You're quite a brave person with this, and all that you've gone through. I can tell you that research in the UK now shows that Milroy's can show up without the need of either of the parents carrying the gene - neither my husband or I have it. It's just one of those things unfortunately. I've had a few emails from parents and what really seems to stand out is that there is little outside knowledge and even less help when it comes to this condition. No, it isn't up there with cancer or MS but it is a serious condition and can lead to some serious problems. I think it is time that peoples voices were heard, not just the medical profession but actual people affected.
I will say that now my little one is almost two and to look at his legs you would hardly notice his problem. He has prominent veins on his legs and puffy ankles but it doesn't stop him getting in some awful scrapes. We've had a couple of infected toes too but jumped on it quickly enough!
You are right that it is wrong to limit what he does - we want him to be as normal as possible, but we also have a duty of care to make sure that he is kept as safe as we can. Perhaps it is easier with a girl to stop knocks and scrapes (though not in my case as I was a terrible tomboy!). Whatever happens in the future I need to know that I have done all I can to keep him safe, but also to let him know that he is perfect to me just the way he is.
Good luck with your new baby Sammy, I hope he brings you joy. And if you need any help just drop a line.
Hi, my father and I were doing research on this Milroy's disease and we stumbled upon your page. I have a 2 month old boy named Najm, who (so far) is undecided on what the swelling is on his feet. The pictures of your son though, look the same as my son's. The only thing that defers a little from your story and ours is that we've known his feet had swelling, weeks before his birth. They didn't know what it was then and 2 mos after his birth, still nothing. We had a checkup with Genetics today and thats where they brought up the chance that he may have Milroy's disease. We did blood work and we still have to wait for the results, they did chromo testing, those results were negative as well. My wife and I are very much instrumental in finding out exactly what is wrong. I'm home with him all the time and my wife works so I worry that he'll be restricted from walking regularly and becoming easier fatigued. They keep telling us that our baby is perfect besides that, but what they tell me really doesn't reassure anything, except that my son has edema on his feet from birth. I really wanna thank you for your information and for sharing your story. It has helped a lot! Thanks.
What is worrying is that there seems to be so little known about this condiditon in the medical proffession. Through blood tests we have just had confirmation that Jack does have Milroy's - the gene they looked at has mutated and points strongly to it. Please don't worry about your little one's activity; indeed if he is anything like Jack then as soon as he's on his feet there'll be no stopping him and exercise is a good thing for helping manage the condition. Yes, he does sometimes get tired quicker than his brother, but he still kicks a ball, runs about, climbs on things and does all the stuff a small child would. But, because we have instilled in him from birth, he knows he cannot go anywhere without shoes or slippers and he always wears his tights. In the summer he'd have to wear beach shoes anyway as we have weavers - a small, very poisonous fish - that like to hide in the sand so none of us go barefoot. For me it's a case of making him as safe as possible without making him feel too restricted. But as a responsible parent I know it would be awful if he was hurt because I didn't take little precautions to manage his condition.
I'm glad to see from the comments and emails that I've had that people have found this hub useful. Please keep in contact if you want to talk; the unusual manner of this condition means that you often feel alone and helpless.
Hi there, I also have Milroy's Disease. And it's something that can be saved. I also had it when I was born and immediately my parents searched for someone to help. We went all over the country and found a surgeon in Boston who re routed the lymphatic system in my right leg through a series of 5 surgeries. I wore compression wraps for years as a child. And now I am 32 years old was a cheerleader and dancer my entire life and am living very normally. Yes there is scarring on my leg, but who cares! So there is something that can be done, you just have to find someone familiar enough with the disease.
That's fantastic to hear. Our nurse thinks that he may actually have co-lateral lymphatics now so it is starting to drain, but he still needs the care.
Thank you for this post. My daughter is 4 months old and we have been trying to figure out her swollen feet. Her feet look like those in the photo above. Can I ask you some questions. . .did your son's feet stay "pitted" when you pressed on them? Did it start out as swelling in the feet alone and spread to the legs? Is it inevitable for the feet swelling to become leg swelling too? They are testing my daughter for the disease soon. Any more information you can share would be so helpful. This website was a blessing to me today.
His legs and feet were swollen at birth, but it did not extend any further - what he had at birth he retains now. When you press on the feet or legs there will be an indentation that will stay as you are pressing on the fluid - this is why compression garments are used to help move the swelling. Don't put on booties or socks - anything with elastic that will constrict in just one place. Check for signs of skin damage as you may find the skin becomes flaky as it is pulled tight. And make sure you get proper help. I hope all goes well with you, and please get in touch if you need any help. My son's feet are looking good at the moment but we have be advised to keep up the skin care as they will swell at any time, but especially if he sustains an injury. I hope this helps and thanks for reading.
Thank you so much for your reply. I'm waiting for a call from the genetics doctor at the hospital. Can you tell me what to expect to test for Milroy's? Is it blood work? Is is straightforward testing such that any genesticist could do the job. ..or is there reason to fight for the "best" doctor? Do you still do massage daily? Or multiple times daily? When you say that your son's feet are looking good, what does that mean? Are they less swollen than at birth even? If so- what do you attribute the decrease in swelling to? Thanks again.
Here's what I know, and I'm no expert! The test for Milroy's is a genetic one - basically they took blood and tested to see if he had the 'faulty' gene - which he does. They wanted to see if it came from either myself or my husband, but I'm petrified of needles and really it's a moot point as we aren't planning on any more children. Yes, he is still massaged morning and night - I was told the more often you do it the better, but it has to be taught to you by a lymphoedema speciallist, or at least someone who has studied SLD (sympathetic lymphatic drainage). If you use ordinary massage techniques or you are doing is increasing blood flow which means the lymphatic system has to work even harder and will cause more swelling. If you looked at Jack's legs and feet briefly you would think he has nothing wrong with them; however he still has puffy ankles, swollen toes and prominent veins on his legs (a sure sign of Milroy's). They are definitely less swollen than at birth and we really noticed a diference when he started to walk (exercise is one of the key management points). He also wears tights (ordinary ones not support ones) and this may be helping as it is a sort of compression garment. HOWEVER we have been advised not to be complacent and to keep up all the management techniques as the swelling can return at any time, especially if he gets an injury. For me I need to feel that I am doing as much as I can to keep him from getting cellulitis - once he gets it it becomes easier to get it again. his doesn't mean wrapping him up in cotton wool - as a little boy he is forever getting into scrapes, climbing on things, falling over, fighting with his brother etc BUT I don't let him walk around barefoot, I make sure I keep an eye on him and I'm sensible. I would hate it if he became ill because of my negligence. The other test you might be asked about is a lymphocytography (it has many different names). This one will tell you the extent of the lymphatic damage. But we've been told it won't be done before 5 ears and really, all we need to know is that he has a problem. This test won't cure him. Yes, go for the best as it is important to get someone who knows what they are dealing with. If you are in the UK you can get an information pack for your GP from the lymphoedema society network (I think I put their website addres in my article). Also they have some packs for schools, nurseries etc which will help in the future. Get as much information as you can, you can never have too much, and new break throughs are happening all the time - when Jack was born we were told Milroy's was only passed through parents, now they've said it can just occur spontaniously and he isn't even 2! Keep your chin up, keep fighting for help and know that there are people who are going through the same thing and are there for support.
Thank you so much for the information. My daughter's feet have pitted edema. There is no swelling in the legs. She doesn't have obvious veins. She does have deep grooves in her toes and upslanted toe nails. She seems to have some of the symptoms, but not all. They are doing an ultra sound on her kidney tomorrow to rule out kidney related issues and then genetic testing. I talked to a different pediatrician today who thinks it highly unlikely that my daughter has Milroy's Disease because her legs aren't swollen and because it is so rare. Interestingly enough, my oldest son was also born with similar looking feet (not quite as swollen), but has normal looking feet now. If my daughter has Milroy's disease, then they will test him as well.
I am praying for a final answer so that we can move forward with the appriopriate treatment. I truly appreciate your willingness to contribute information and advice on our behalf. Thank you.
Any illness, especially one that is so unheard of, is a worry in your child, which is why I decided to write this hub as there was so little we did not know - nor the doctors either. I'm glad it's been of help to you and I hope all is well with both your children.
Well hello i have a 7month old baby boy who seems to have this disease that i never new existed.i went 4 months with no 1 knowing an
y thing 1 doc told me that my son had amniotic bands in his ancles and we were able to get surgery but then shortly after my son getting an mri a diffrent doc called to inform me that ther werent any bands and that it was just plane old lymphadema ! im a 23 year old mother and i dont know where to turn 4 help. This page is the most info ive gotten yet! I GUESS WHAT IM REALLY WONDERIND IS CAN MY SON GET SURGERY ? IF SO LIKE THE COMMENT FROM KERRI (6 WEEKKS AGO) WHAT IS THE PROSCESS AND WHERE DO I START? I've already gotten therapy practice and i do the massagins and comprasi8on rappings every day 4 my baby but ther has to be more i can do! iI LOVE THIS PAGE AND WILL BE BACK OFTEN TO TO FIND AND GIVE AS MUCH INFO AS I CAN!
Thank you very much for your comments and again, I'm glad this hub has helped. Firstly I sympathise with you re the lack of doctors knowledge. Jack was taken away from me and put in neo-natal as the doctors didn't understand what was wrong. It was only a Locum doctor from Denmark who had seen this problem who was able to give a diagnosis.
As to your questions, here it what I have been told via my specialist - please note that I am in the UK, if you are from the USA you may have different medical help. Diagnosis of my son has come through gene testing via a blood test. The test to see how extensive the lymphoedema is will not be carried out until he is 5 as he is still growing. This test is just for diagnosis purposes, there is, as yet, no cure. Perhaps in the USA there are more advancements and I know research is being carried out as we speak but I cannot help on any further than that. Also you have a baby who is not yet walking. Before Jack started his legs were really swollen, feet domed with massively puffed up toes. Since he's been up on his feet they have decreased in size dramatically - you would alsmost think of them as normal. we have been told that this is natural as exercise is beneficial to moving the fluid, but his condition could flare up again, especially if he has a bout of cellulitis that so far we have managed to avoid.
I think you're wrong to say plain old lymphoedema - every case is different with some worse than others. We have been told that because we started management of Jack's feet and legs at an early age he is in great condition. It is not something that holds him back, although I am a little more careful with him. If you start management at a young age they are used to it - my son wears tights instead of socks but to him that is normal. He may be different, but with a pair of trousers on who will notice? Yes, he will always have to be more careful regarding his legs and feet, but it wont stop him from being an ordinary little boy.
Don't be so quick to put your little one through surgery that may not necessarily work, especially at such a young age. He may not really need it.
Hello ! thanks 4 the response ! when i said plan old lymphedeoma that was what the doc said ! i actually just got a computer about 4 days ago and have been goin crazy just lookin up any info i can to just try 2 find out anything i can ! i am in the usa and im not sure how different our medical feild is here but i had to do 4 months of training to learn how to do therepy on my sons feet and a lil on his right leg as well i seen at the top of your page where it says that the compresion bands could be even worse! i really hope its not causing any more damage 2 him! it seems 2 be workn because his feet look great and they dont swell back up to fast when i take the bands off a few hours a day but i have no idea ! im going 2 continue looking for every bit of help i can get to make sure my perfect little man is as happy as he can possibly be! please any web sites that u know of that have been helpful to you or info that will please continue to share... 1 more question? did this seem to slow your lil man down from crawling as soon or walking ? my lil 1 is 7months and 1week and i play with him often and try to help him crawl but i think maybe the bands may be making it more tough. any ways THANKS AGAIN and i hope yo cat again soon .
They are thorough with you! I was taught in a couple of hours how to do the lymphatic massage - unless, as you say, the UK and USA treatment is different. As for walking, it really is difficult to compare as all children are different. My eldest started pulling himself up earlier, but he did a lot of cruising rather than walking alone. Jack went from crawling to walking just like that, and now it is difficult to stop him! He does get more tired than the elder, but again, he is younger. He also complains that his feet hurt/are tired, but it could just be his excuse to be picked up! I think you will be fine as you've been shown how to do things at a young age. And yes, when Jack was diagnosed the first thing I did was trawl the internet for help, and gave myself nightmares!! I found www.lymphoedema.org the site of the lymphoedema network very helpful as they are the society that is investigating the causes of are treatments for lymphoedema. I think the most important thing to do, aside from looking after your baby is to keep on at people to get as much information you need. No-one can have too much knowledge.
This was very interesting to read, as I have lymphodema too. I'm 22, but noticed it at about 13 or 14. my left ankle/foot/leg are constantly swollen, and even worse in the summer heat or when I'm standing on it for long periods of time. My mom and grandma also have it in their left ankles/feet/legs. I HATE it and am SO embarrassed to wear shorts or skirts or anything. I'm not afrait to explain it to people though, because I think we need to do more about it!! The first few doctors I went to had NO idea what it was, and my mom and grandma had never gone to see doctors about it because they're both heavy and just thought that was part of being heavy. I, on the other hand am skinny as a rail and have this swollen (and sometimes painful) part of my body that is so uncomfortable!
I'm so sorry to read that your beautiful son was born with it :( It sounds like lots of work for you guys but you're super brave for working so hard at it!! I'm currently 3 and a half months pregnant, and I'm so worried I'll give it to my child, too. I hope more cures come about, and more doctors won't look at it with puzzled expressions as time goes on!!
Don't worry about giving it to your child - if it's Milroy's disease then it's a 50/50 chance. Even if your child is born with it YOU will know what it is all about and what you can do. I cannot stress again how important it is to seek proper medical advice - we have been told that Jack's legs are looking good ONLY because we managed his condition from almost day one.
At least you can understand what your child will go through. I suppose it's easier for a boy as they are not expected to wear short skirts or show their legs that often. And today's society is so superficial over looks it is no-one can live up to the airbrushed super models we all aspire to. You have obviously found someone who loves you and I hope that Jack will find the same.
hi there,my daughter,son,as well as myself have this disease. my 3 yr old daughter has it from both kness down,my 7 yr old son has it in both feet. myself,started in my right foot ,and as i got older,it went up and i know have it knee down in my right leg and also i has come up in my left foot. my right leg is very abnormal shaped now, stretching so much from swelling. some days are worse than others,,but if i could could take it away form my kids,i would in a heart beat. thank you for shareing your story. you just take it one day at a time,and by the way your son is beautiful. several people in my family have this,so when one of our babies are born with it,,we say,they have the sweet feet or sugar feet.,have a great day hun.
What a lovely way to describe it! We tell Jack that he has special feet and he is so good with making sure he wears his slippers at home without fuss (unlike his older brother) and loves wearing tights (i think it helps that we've had a couple of awful summers so far!). As you say it's a take it as each day comes; I think I will be happier when he does actually injure himself - I know it will beupsetting but at least I'll know what's going to happen. One thing I will add for anyone who has a little one with this condition - we have just got Jack to have the Chicken Pox vaccine. He may have had a mild dose, but if it had been a big one then it could have been disasterous. If your child hasn't had chickenpox discuss it with your GP or nurse. It might be worth the hassle just to take another worry away.
I would like to thank you for your comments. My niece is two weeks old and was born with the same condition as your son. I am trying to gather as much information on this condition as possible. I believe that it is Milroy's disease as well. We live in the United States in the Midwest with not a lot of well informed doctors on this disease. Is there anything that you can tell me where to start. My brother and his wife are seeing some specialists this week to begin to discover what is going on. I would appreciate any advice that you might offer and I forwarded this information on.
Best Regards
I'm in the UK so bear with me if the medical professionals are slightly different! They need to see a lymphoedema specialist - normally a nurse - who will able to give them help on managing the conditon. The nurse should also be able to put them in touch with a specialist doctor who can properly diagnose the condition. I must really stress DON'T let anyone who doesn't know anything about the condition advise on treatment - so much of the information we recieved at the start was against recommended management techniques. There is a really good british website as shown on my site (the Lymphoedema Society Network). They have articles and information for sufferers. As lymphoedema is normally a side effect of cancer your family may find that they are directed towards cancer carers (as we were). Don't worry, it's just these people deal with it on a day to day basis. DO get it properly diagnosed and do read up as much information as possible - little things like no elacticated booties as these can cause pressure in one place that can lead to skin damage, and no vaccinations in the legs either! I wish you good luck and if I can give you any more advice please get in touch.
Aphroditei says:
2 years ago
That's a very informative and touching hub you wrote Tjmum. I'm sure it will help a lot of parents who are facing a similar situation. And I think you're baby is really a happy boy, especially with a mom as courageous, supporting and loving as you. Keep the Faith and your good works! And thank you this hub is very helpful.(^^,)