Our Lymphoedema Story so far…. 

img_20160302_114330.jpgMarch 6th is world Lymphoedema Day (lymphedema is US spelling) and the start of Lymphoedema awareness week, we will be wearing odd socks and posting on social media to raise awareness to the world about Lymphoedema. It’s a struggle for most people to get the help they need because it’s not something that’s widely know about even among GPs and hospitals. There are two types of Lymphoedema Primary which you are born with and secondary that comes following removal or damage to lymph nodes which you can find out more about Here. Little S has Primary Lymphoedema and this is our story so far… 

Our beautiful baby girl was born late 2014, it had been a really difficult pregnancy with hyperemesis gravarium and SPD and for most of the 9 months, when I wasn’t working I was in bed unable to move but she was finally here, I was only in established labour for about 5 hours maybe even less, once my waters were broke it only took about an hour and half and she was born, she had her checks and passed them all with flying colours.
Fast forward 5 weeks and we noticed that one of her hands was slightly bigger than the other like it was swollen, you could only really tell when the two hands were together, otherwise it just looked like a chunky baby hand, but her other was so dainty, it also looked like it was up her arm and being the left side we got worried and called for an appointment with the GP only to be told by the nurse that we didn’t need an emergency appointment that day and to call back if it didn’t go down in a few weeks. That wasn’t going to happen, I immediately hit Google and came across Lymphoedema among other things and we went to the a&e that evening. We were kept waiting for hours simply because they didn’t know. I had run out of breastmilk and we had no formula left either but was told by a nurse if we took her home they would call social services, (we were later told this should never have been said and in fact it’s the health visitor they call as routine) we were both tired and distressed by this point and finally not one but a few doctors came to see her, one of them mentioned Lymphoedema but that he had never seen it in a baby before, so they called a peadutrition at another hospital, who didn’t know either but wanted us to go and see her and we were given a time. We arrived at the hospital to see the peadutrition and after being left waiting a few hours finally found out it wasn’t actually an appointment as we had been told, it was like a&e but for children and there was a room full of sick kids! so it was mutually decided that we would come back the following day so that little S didn’t catch anything because she was perfectly healthy otherwise. The following day we went back and there was less people but they had been there for hours, some waiting for days, beyond ridiculous! After 6 hours we were told that we were next and that we would be seeing the consultant peadutrition, finally we were took into a room and the doctor checked her over but again he wasn’t sure what it was and had never seen it before either, he did suggest that it could be swelling from birth trauma or hormones still in her body so he advised as there was no other symptoms, to leave it for a month and see if it would go down, then after making us wait another half hour to go chat to a colleague he said we were fine to go. It was apparent they had no idea what it was but we were assured she was perfectly heathly in every other way. Later that day I got a call from my GPs office saying that we had left the hospital when little S needed an X-ray!! The consultant was on another line and they connected us, I explained what had happened and she told me that actually she was the consultant that was on duty and she obviously never saw us, it was actually discovered that we had been seen by a junior doctor and we needed to go back so that little S could have the X-ray, she told us if we went for the X-ray at 9am then went back to the ward we would be seen right after the morning meeting, not by her as she wasn’t on duty but she said she would explain to whoever was. We got to the X-ray early and they were ready for us, we then waited another 6 hours to be seen, the consultant again had no idea but suggested an ultrasound which we would get an appointment for and be referred to a clinic, where you get a proper appointment, they also had an othopedic surgeon look at the X-ray and come and speak to us, they implied that the wait would be long to see him, however he was there in less than half an hour and spoke the most sence, he told us her bones looked fine and if we ever wanted anything done go to the GP and get referred to a clinic and tried to reassure us there was nothing on the X-ray that looked worrying and if it was Lymphoedema they wouldn’t do anything there.

We got the appointment for the clinic first when little S was around 3 months old and the peadutrition said she was sending for an ultrasound appointment, that she thinks its Lymphoedema, but that it’s only cosmetic, I knew right then she had no clue because I’d read up on it amd i knew it was.more than just cosmetic!!. A few weeks later we got an appointment through for the ultrasound and when we got there we were told she was having a chest X-ray too, I immediately panicked I had no idea she was having an X-ray they told me it was what the doctor had asked for and its just routine to get an X-ray too. A couple of days later I got a call from the GPs office saying they had results for little S X-ray and that she had swollen lymph nodes on the right side of her chest which wasn’t normal and wanted to know if we were seeing a consultant about it and who ordered the test, she said they were just trying to keep us in the loop but I was terrified and confused, it wasn’t even in the same side as her swollen arm and hand and they didn’t have the full results, so we called the peadutritions office but she was off on leave and the doctor who was standing in for her had ordered another X-ray so they could compare. We explained the situation to the secretary who said she would have her call us back to talk to us about it, which she did, and said it wasn’t anything to worry about that sometimes in babies their lymph nodes can swell and go back down again but they needed to check to make sure it did go down, the other side was fine and everything else looked good, relief!! We had the follow up X-ray and it had gone down. We didn’t have an appointment for a couple of months to discuss the results of the X-ray with the peadutrition or about what was next step, it was a long few months.

In the meantime after some more research on google I managed to come across a group on Facebook called Lymphwhatoedema and The Lymphoedema Support Network (LSN) I was advised by a member in the group to call up LSN and speak to someone, which we did and they were really helpful and told us that there was a Lymphoedema clinic not far from us, little S is now a member and they sent us a pack full of information. We called the clinic and was told as it wasn’t NHS funded we would have to apply for the funding. We got the referral forms ready for little S’ appointment with the peadutrition, who told us that it would be better if the GP did it. So we made an appointment to see our GP who didn’t understand why she couldn’t of done it, but filled it out for her anyway. In the meantime the peadutrition had referred us to Alder Hey Children’s Hospital in Liverpool to a plastic surgeon, because she was still adamant that it was cosmetic and that’s where she was told they sent children with Lymphoedema. In the research i had done i had read that a Lymphoedema specialist would be able to diagnose just by looking at the person and observing them when other obvious and more serious conditions had been ruled out, like heart disease etc so we were hoping that this plastic surgeon would know something about it even though LSN said he wasn’t on their list and it wasn’t recommended for children with Lymphoedema to have any kind of surgery. At the appointment there was a nurse, the plastic surgeon and another consultant in the room, the doctor looked at little S’ arm, and at first he said he didn’t think it was Lymphoedema, then later on he said he didn’t want to give her a diagnosis and her be stuck with the label and it be wrong, but it probably was Lymphoedema. The plastic surgeon and consultant spoke amongst themselves and agreed to really know and to be able to give a proper diagnosis she would have to go under general anesthetic and have an MRI, I was not ok with this, I knew then that these people had no idea what they were on about either, I explained to them about LSN and seeing Lymphoedema nurses to have a look at massage etc and that I believed they would be able to tell us if she had it, so the conclusion was that we were to see the nurses try massage, see if it worked then it was Lymphoedema and if not then go back and have an MRI. What a waste of time. We then recieved a letter stating diagnosis congenital Lymphoedema. We never went back.

20160104_115228.jpgWe recieved a letter to confirm that little S had been accepted by the Lymphoedema clinic and that the GP would have to apply for the funding, now it made sence why no one wanted to do it!! We had 12 weeks to have it sorted or they would assume we didn’t need it anymore. We waited 5 weeks and heard nothing so decided to chase it up and discovered the GP hadn’t even sent the form off to apply for the funding, it was not long after that it was approved. When we called the funding office they told us that our GP would let us know when and if it had been approved, the first we heard of it was when the Lymphoedema nurse called and said she was coming to see us and was surprised we didn’t know about the approval, the GP did let us know about 2 or 3 months later. Little S was 13 months old when she had her first appointment with the Lymphoedema  nurses, they brought her a children’s book all about Lymphoedema, they looked at her arm and hand and both agreed that it was Lymphoedema!!! Hurray!! They measured her for a compression garment that is like a fingerless glove and goes just up to her elbow, they showed us how to do a bit of massage and came back to fit the glove when it arrived. Since then she has had an infection that is common with people with Lymphoedema called cellulitis, we noticed a small blister under her first finger in her palm, it was red and swollen all the way across, we had to take her to the out of hours doctors as she needed antibiotics asap, which she had to take for 14 days minimum,  if left it can be really bad so attention is needed immediately, the blister grew throughout the day and burst the next , we had to keep her garment off until it had healed enough so that it wouldn’t be uncomfortable, which was for about 5 days. From January when she got the glove to mid February when she had a check up her hand had gone down 1cm in the biggest part and 1/2cm under her fingers so she was measured for a smaller size glove to help it go down more. She loves wearing her glove and most of the time happily sit while I put it on her, it must give her support and a bit of relief, she wears it during the day and when we take it off at night we can tell her hand has gone down as it kind of feels like a deflated balloon. 

The most difficult part of it all was waiting so long for answers, the uncertainty of what was wrong with our baby girl caused many sleepless nights. I’m sure anyone could imagine what a relief it was to speak to people who knew what they were talking about. The Lymphwhatoedema group and LSN have been fantastic.

Skin care is very important with Lymphoedema and with little S having eczema as well, she has had some bad breakouts but none of the creams the GP could give us were any good because they would just make it worse, we discovered that she is possibly allergic to preservatives and pestersides, and there is nothing close to the cream we make for her available on prescription which is the only thing that keeps it under control. 
As you can imagine getting clothes for her can be difficult too not only for her arm but not all 100% cotton clothes are comfy for her she would itch more in the places where her eczema is the worst in some clothes and be up in the night too. I’m not sure how I first came across organic cotton but I didn’t know it existed until I had little S, I was very blessed that I discovered a great place to get organic clothes from because not only are they 100% organic cotton but they are nice sizes too, so less itching and waking in the night in discomfort when she wears the organic cotton baby grows, and they fit nicely over her arm. They also have excellent customer service, super fast delivery and a Facebook group where you can chat and ask questions to people who have bought the products themselves and to us on a tight budget that has been invaluable. 

We are still very much on our journey to managing her Lymphoedema but we have found some great resources in the natural world and have just recently recieved a new shower with a filter that removes 100% chlorine and other chemicals from the water it really is like showering in spring water, (I will review that soon). We are greatful for the Lymphwhatoedema group, the LSN for all the work they do and will continue to be a help and support to little S for the rest of her life. 

Links

Lymphoedema Support Network 

Lymphwhatoedema Website 

Babi Pur – organic baby clothes plus other great products 

Ultra Shower – removes chlorine and other chemicals

Homemade Eczema Cream

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38 thoughts on “Our Lymphoedema Story so far…. 

  1. Oh my goodness, you must have felt like in limbo all the time, all that waiting! How frustrating it must have been for you and your family. Hope all is well. x

  2. It has been a long process but sounds like slowly but surely you’re getting somewhere. Terrible of that GP to just forget to send off the form for the funding – I think that’s unacceptable personally. Anyway, wishing you the best of luck with this and thank you for sharing such a personal story.

    Alina from The Fairytale Pretty Picture and category manager at The Olive Fox

  3. We are having a struggle at the moment because little s has deep red coloured rashes, they do go, but have only ever been on her Lymphoedema arm, until a week ago when she has a tiny one in the opposite shoulder, however no one knows what it is and It seems to be the case where GPs are saying a lot ‘just see how it goes’ or ‘give it 2 weeks then come back’ regardless of how long somethings been going on, because they don’t actually know what some things are, whereas if I put the symptoms in google, like I did with the Lymphoedema and narrow it down it gives a few options of what it could be, I find it very worrying how GPs are these days.. Now I sound old 😉 thank you all for your comments. Have a great weekend xx

  4. wow, good luck on your journey! I had never heard of lymphoedema until now! I am always wearing odd socks so count me in 🙂

  5. How frustrating it must have been for you and your family to spend all that time waiting in limbo. Until I read this post I had never even heard of Lympheodema x

  6. We didn’t know what Lymphoedema was, until now! Wishing your family all the best and thanks for highlighting and raising awareness! We’ll be keeping an eye out on social media xx

  7. Hello, reading your story brought back so many memories for me. That journey at the beginning where no one knows anything and they just try and fob you off, the worries, the fears and overall just wanting to help your baby when no one else can. GPs in particular know nothing but I am glad you have found support through the LSN and your clinic. Our Lymphoedema Physio is our angel!! Trying to deal with her excema must be so stressful as well but sounds like you are doing an amazing job with it all. Our daughter is now 4 (lymphoedema in her legs and feet) and mostly we are in a good place as she just gets on with loving life. Feel free to check out our blog and if we can help in anyway do get in touch 😊

    1. Its good to know there are people that understand although i would never wish anyone suffer through the unknow as we have. You have to go far and wide to find the ones that actually care enough to help. I will definalty take a look at your blog, thank you for commenting we all need as much support as possible! 🙂

  8. Such a amazing story. I found I just had to keep reading it to the end. I had tears in my eyes reading what you have been through, all those hours waiting and waiting. Your little girl is so lucky to have two amazing parents.
    xxx

    1. Thanks so much Paul 🙂 it was six months or so of sleepless nights worrying and watching to make sure she was ok, her cot is still in our room next to the bed with the side off now so we can keep an eye on her 🙂 xxx

  9. This made me so upset to read about the back and forth between the various doctors before finding the support groups. As an aspiring health care provider, this is precisely the type of thing I hope to one day mitigate. I am so glad that you found the support group and have begun to find things that make it possible to manage little S’s lymphodema.

  10. Wow! What a journey. My hat goes off to you for being so persistent. Managing the medical field can be rough with all the running around and mis-info you get. Happy to hear that you all are doing well. Thanks so much for sharing your story.

  11. I feel your pain with struggling through the health care system and finding good doctors. Good luck on your journey with her medical issues. Stay strong.

    1. In the UK we dont have insurance oir healthcare is mostly free but to be honest its an absolute mess, this isnt the only problem we have encountered in fact having both my younger children wasnt great experiences due to lack of care and both habe suffered at the hands of our health care, the lack of communication is just awful its difficult to find a good doctor!

      1. That’s the shocking thing about free.Theres no accountability on the government’s part .It’s like “it’s free so you have to live with it”.
        In India the government hospitals have a lot of free services .But the overpopulated hospitals make any kind of one to one doctor patient communication nearly impossible.
        It’s very sad that even in UK you had to face this problem.
        Both me and my hubby are doctors in government medical colleges.We have health insurance both private and that provided by our government. But we have realized the best way to deal with hospitals and doctor’s is to try to stay as healthy as possible and be aware .
        Healthcare should be free and accountable. But it’s rare to find both.Keep sharing your stories.

      2. Definitely agree there is no accountability, in the private sector like in the United States if you dont like a consultant you can go to another and that one looses out on your fee where as here no one cares and they get paid at the end of the day regardless, the training is also better in the states too. We need more doctors and better training, i won’t get started on the midwifes 🙂 the last two gp surgeries that we went too, the head gps were both older men from India and they were the best doctors, if i had been able to see the first one from our previous town i know he would have had it sorted, he sat with us once for an hour! Poor people waiting after us, i was nervous making them wait but he wanted to ask questions and make sure we understood things.. Thats what doctors should be like, one in a billion over here so rare!

      3. Medicines that most of the time cause so many other problems, i think the best we can do is like you said look after our own health as much as possible, i think everyone should educate themselves on total self care, its a journey but if we learn then we can teach our children.

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