Archives for April 2014

Lucia has a cut knee…a day I have been dreading since she was a baby because of the possible risks associated with her Lymphoedema. And I am currently wondering if it would be wrong to dress her every morning in a padded onesie (only joking…I think!).

I am happy to say that she is fine and thanks to the protection of her compression tights (go compression!) the cut really isn’t too bad and is healing well.

Max, Lucia and I were out for a walk and the two of them were running up the path when she tripped, fell and landed hard on her knees. I immediately went to pick her up but, being the independent little lady she is, she refused to let me lift her and carried on running after her big brother as if it hadn’t happened!

She LOVES to run – where is the fun in walking when you can run everywhere? My heart tends to be in my mouth when she takes off as she can be a little unsteady and I am always afraid of her tripping. I am still the same with Max even though he is 5! We live in a village with a lot of hills and over the years he has fell up them and down them numerous times resulting in some nasty cuts – so I have been trying to prepare myself for the same sorts of things with Lucia.

However, Lucia cutting herself has the real potential to bring with it some serious complications such as infection, cellulitis and even hospitalisation on iv antibiotics. As you know, I am a very positive person and our family has a very positive outlook on life but this has been and will continue to be a real worry for me.

The fluid that is in her legs and feet is not just excess water – it is full of harmful proteins and toxins which are unable to be removed from the body therefore any small scratch, cut or bite can quickly lead to a serious infection such as cellulitis. And because her immune system is compromised with the Lymphoedema it also takes her longer to heal as well.

However, as I have said before in previous posts, she is a pretty robust little girl and her cut is healing just fine. On a bare leg or even with a pair of ‘normal’ tights it would have been much worse – but the heavier, sturdier compression tights made sure that the cut didn’t go too deep. We have been treating it regularly with savlon cream to try and ensure it doesn’t turn into anything more serious and so far so good.

She also had a horrendous case of chicken pox when she was just eight months old and with the open sores that she had then we were really on edge and keeping a close eye on every spot for signs of infection – but she got through it fine.

Long may this continue as part of being a child is falling and getting scrapes and cuts. Obviously we will try and prevent her from hurting herself as much as we can to minimise the risks, but, short of dressing her in that padded onesie we will just have to take each day as it comes!

I will warn you now that this post may have a few bits that might make you squeamish if you aren’t too keen on feet! But just remember, they are the feet of a gorgeous two year old princess so they can’t be that bad!

Today I took Lucia for a podiatry appointment – and it was not a nice visit. It had a lot of screaming and a lot of tears – and a lot of chocolate buttons to calm Lucia down afterwards. Although it was a tough appointment for Lucia (and me – I am still a bit shaky this evening and have ate my own share of chocolate buttons!) it was well worth it for the results.

A little background

Someone suffering from Lymphoedema in the lower limbs and feet can have quite a bit of trouble with the toes as this is one area where it is extremely difficult to move the fluid from. Therefore there is constantly pressure on the toes from this fluid without much relief. Add to this that the toes have to take on the pressure of compression tights and shoes as well as carrying body weight throughout the day and you can start to see how problems can so easily arise.

All of Lucia’s toes are puffy but eight out of ten are perfectly beautiful and healthy! Her two big toes give her a bit of bother though mostly the big toe on her right foot – the foot with the most swelling. (Warning – gross description coming!)The pressure of the fluid in her toes has caused the skin on the corners of her big toe to start to grow over the nail in two big ‘lumps’ if you like. These two ‘lumps’ then tend to become red and inflamed regularly and also infected at times. Fortunately, so far, we have always been able to manage these infections and inflammation ourselves with our meticulous skincare regime, keeping them clean and dry, putting savlon antiseptic cream on and ensuring her compression tights aren’t too tight around the toe.

At these times she definitely feels some discomfort, but I don’t think any real pain – thankfully. She will say ‘sore toe’ and doesn’t like anyone looking at it never mind touching it but being the wee soldier she is she doesn’t let it stop her doing what she wants to do!

However, it does stop us doing what we NEED to do – mainly her lymphatic drainage massage. This would mean that as we helped to move the fluid through the body to encourage drainage we would also be helping the infection to spread through the lymph and this could make her ill. So when her infection clears up we try to do extra massage – which she now actually enjoys!

The foot lady

Over the last six months we started seeing a podiatrist regularly as these infections were occurring too often and the skin around the toe was growing so far over the nail we were having difficulty cutting it properly. And it really hasn’t been looking healthy. So the podiatrist has been treating it with silver nitrate – and it is amazing stuff!

For those of you who don’t know how it works the silver nitrate comes on the tip of a stick. A bit like a really long match stick. You dip the tip of it in water and this activates the silver nitrate and you then paint it onto the hard skin growing around the nail. In a day or two this skin then slowly turns black – our podiatrist kindly told us that this would happen as you can imagine how freaked out I would have been had I woke up the next day to find Lucia with a black toe!

Silver nitrate is corrosive and destroys the skin cells so after a couple of weeks these big lumps of skin fall off leaving Lucia with what looks like a brand new toe! Amazing!

But it isn’t long before the skin starts to grow over the nail again and so we go back to the magic matchstick. The other issue is the nail on that toe. It has got to the point where I can’t cut the nail because of the skin and today was the first time the podiatrist had to get her tools out, get under the skin and cut the toe nail to prevent it from becoming too embedded in the skin.

Now you can understand the screams. It took me and two podiatrists to hold her still while she screamed and cried until they finally managed to do the job. It was a very long half an hour and I felt so cruel. But when I saw how brilliant her toe looked and how neat the nail was I knew it was all worth it. And once the tools went away and the chocolate came out Lucia was back to her usual happy self.

Toeless tights

Then came the suggestion that perhaps toeless compression tights would be an option as there would be less pressure on the toes. I have no idea how these could work though!

Lucia’s tights have extra layer of compression sewn into the right foot to try and squeeze the fluid up her leg – so how would this work if they were toeless? Would the compression work as well if they aren’t enclosed? As she has fluid in her toes surely she needs a closed toe to try and help this swelling rather than leaving them untreated? How would the tights stay in place and not move backwards up the foot? What kind of a sock would she then have to wear over her toes to keep them protected as we can’t find socks that she can wear without being too tight around the ankle.

I will of course be chatting all of this through with Lynne, our Lymphoedema Physio and I am sure she will have answers for them all but until then this is what is going through my head. I also know we are still very much in the trial and error phase. Our first trial was the tights which continue to help Lucia hugely – but maybe this is their one flaw. Maybe toeless tights will be just as good but give her toes a bit of relief. Maybe we could have a pair of each and depending on how her toes are that day decide whether she will have toes in or out!

As always I am just very thankful that we get such wonderful care and help from our health service and know we are very fortunate that Lucia is getting all the treatment she needs to ensure her Lymphoedema is managed well.

When I came home from work a few days ago I was very excited to find the Spring edition of Lymphline Newsletter had arrived! I always look forward to getting it and reading about the latest research into Lymphoedema and the various personal stories – but this issue was particularly special as it included our family’s story along with a gorgeous photo of Max and Lucia.

Lymphline is the quarterly newsletter sent out to members of the fantastic Lymphoedema Support Network (LSN) based in the UK. The LSN offer an amazing wealth of information about the condition and when you become a member you are sent out a brilliant range of leaflets and fact sheets that are regularly updated.  We received a brilliant pack full of information specifically for children which was the first time we had got our hands on something that was tailored for us – and as you can imagine we read every word.

Just before Christmas I contacted the editor of Lymphline, Anita Wallace, to see if there was the possibility of starting a ‘Kid’s Corner’ in each addition for parents like us and her response was fantastic! She asked me to start the ball rolling with Lucia’s story – so we did!

I really enjoyed writing the article – the main part of my job is writing – so to have been able to write about something so important to me was very therapeutic and was actually what inspired me to start this blog, so thanks to Lymphline for that!

If you haven’t come across the LSN – whether you are UK based or not – I highly recommend having a look at their website.  The LSN is a registered charity run by people who live with lymphoedema and is the largest information provider about the condition in the UK. They know what you are going through. You can find them at www.lymphoedema.org