I had planned to write this post over the weekend when we got Lucia’s bandages off, but we had some gorgeous weather and made the most of that instead!
My last post focussed on Lucia getting the bandages on and how she managed (amazingly!) – if you want a wee read click here. This post is about the results and future plans.
So – Lucia managed to keep the bandaging on for a full 24 hours which was brilliant for her first time. She slept all night in them and the only issue she had was not being able to get her ‘snuggly suit’ (fleecy onesie) on in the morning because her ‘pass the parcel’ was too big. (She nicknamed her bandages pass the parcel because it had so many layers like the party game!)
We headed in to see Lynne that morning and she was delighted that Lucia had managed so well. She told her she was so proud of her and had done brilliantly which made Lucia feel very proud of herself. (This woman is so special).
She then cut the bandages off to see if they had reduced her swelling. I should say here that Lynne didn’t put them on as tightly as she could have – this was more just to give Lucia a feel for them and to see how she would react. So bearing this in mind we were still amazed at the results.
Her leg looked and felt so different! The bandaging had visibly moved so much of the fluid from the outside of her leg and her ankle had the most beautiful little shape to it. And as for her foot – I could feel all of the bones on the top of her foot and her little toes were so long.
Normally when we take off Lucia’s compression at night – and particularly after she has worn her toe caps and shoes – we can feel one of the bones on the top of her foot. This time though it felt so strange to be able to feel the solidness of her whole foot if that makes sense? Hard to describe! Lynne said it was because there was more ‘depth’ to the swelling reduction rather than the superficial reduction of compression garments on a day-to-day basis.
And this ‘depth’ of reduction applied to her whole lower leg and foot. You can see in the before and after photos what I mean.
We were definitely impressed by this and excited to see how tighter bandaging put on for a longer period might go. So much so that we have planned it in for August time.
By the evening though we could see the fluid starting to gather again – you can see this in the picture below which shows the results just after bandaging (left photo) and then her limb in the evening of that day (right photo). You can still see the difference in comparison to the original ‘before’ photo but it just goes to show how quickly that fluid starts to return.
It also just reminds us that we still really don’t know what we are dealing with when it comes to Lucia’s lymphatics – where the issue is, what the issue is – is it a node problem? A structural problem? Both? And until she is a little older we won’t be able to find this out as she has to be around eight years old before any type of lymphoscintigraphy test can be carried out. However, there has been significant movement on the genetics front which I will post on soon.
Anyway, we were definitely happy with this first little venture into bandaging, how Lucia coped with it all like a little star, the results that came from it and the plans we have now put in place to try it again in a few weeks’ time. Watch this space.
Thank you sharing your daughters journey. What a nice story and beautiful little girl. Hopefully one day a cure will be found to help her too.
Hi Barbara, thanks for your kind comment. We are always hoping that science will bring a cure in the not too distant future. Good to see so much research going into the condition.
Hi Jo-Ann. Fantastic bandaging result. We too have done some bandaging with Christian and loved the result. The problem is how to maintain. Theoretically need newly measured customised day compression immediately. Haven’t been able to coordinate this yet.
Also, I’Ve been wondering how you are getting on with the Physiotouch device. We are going to be testing it on Christian’s leg next month. Are you still finding it helpful? The price is now more affordable, but still awfully expensive! If, it helps it is all worth it!
Jo
Hi Jo, Good to hear from you and so glad to hear the bandaging has helped Christian too. I agree on how to maintain though – it’s tough. Our current plan is to get Lucia bandaged again and aim for three days – Friday to a Monday – if she’ll allow it. Then measure her when they get cut off. Order compression garments and when they are due to arrive bandage her again for the same length of time to get her roughly down to that size again for the garments. Far from an exact science but don’t know how else it can be managed? If you come across any miracles let me know!
We still use the Physiotouch regularly (usually 5 times per week, an hour each time) and still find it to be very helpful. It is very expensive (and even more over there with you) but we are still more than happy to have bought it. Will you get to test it for a prolonged period? Will they let you use it regularly for a month to get a good feel for it and what it can do? I would definitely advise that if you can.
Jo-Ann
Great results 😀
I have primary bilateral LE (both feet and full legs) and find bandaging and wrapping quite unpleasant, but does lead to positive results. I’m so impressed with Lucia for lasting so long in bandaging! She’s so grave!
You mentioned diagnostic scans in your post when she’s a bit older. While Lymphoscintigraphy is best known and was the gold standard to diagnose LE (tracks lymphatic uptake in the limbs) , in my experience the ICG Lymphography trumps all scans as it has the ability to assess what the specific lymphatic impairment is. For instance, it can ‘see’ what the lymphatic vessels, lymph valves and lymph nodes are doing (or not doing). The swelling in my feet and ankles look very much like Lucias. The ICG Lymphology scan showed I have no vessels at all below my knee/Lowe leg in one leg, and abnormal vessels in the other. I have unformed lymph valves all around my ankles, thus resulting in backflow of lymph into my feet i.e. lots of swelling. I wonder for Lucia may have a similar issue going on? My groin nodes are also failing so they act like a damn in a rover. Basically alll main parts of my leg Lymphatics did not develop properly before and/or after birth.
Are you familiar with LE&RN Lymphatic Education & Research Network? I didn’t see it in your list of links… it’s fantastic. When I read about Lucia I thought of this little girl Emma in the video. She’s a Lymphie embassador and raises funds for research through ‘Emma’s Incredibles’
http://lymphaticnetwork.org/news-events/emma-detlefsen-kathy-bates-meet
All the best to your family , Cat xx
Hi Cat, thanks so much for the comment and all of the information. It always helps so much to hear other people’s views and experiences. I am glad the bandaging helps you though it really doesn’t seem to be the most comfortable. Lucia is currently wrapped up again and we are hoping she will keep it on for the whole weekend. We are almost 24 hours in and she’s being amazing once again. Thanks for the ICG Lymphography details too – it definitely seems the lymphoscintigraphy is old now and it is great to see new tests and research coming about. Your issues sound like they might be similar to Lucia’s judging on how similar your swelling seems to be. Hopefully it won’t be too long until we find this out. I have heard of LE&RN but must look into it more. I know it is based in the USA (we are Northern Ireland) and have seen some of Emma’s amazing stories. She is a wonderful girl. This wee video brought tears to my eyes! Thanks again for all of the info – so so helpful and really appreciated. xx