Over the last few weeks Lucia has had wrinkly knees and ankles and a baggy bum. Or rather, her tights have been wrinkly! All of a sudden her compression tights seemed to lose some of their tightness which I know is normal when they have had daily wear for a couple of months. On the plus side they have been much easier to get on in the mornings but on the down side it means they aren’t doing the job they should be doing just as well.
So off we went to see our Lymphoedema Physio to get measured for some new garments. And we left on cloud nine! First of all, Lucia sat like a little angel getting 15 dots marked on specific points on her legs and feet and then being measured around them. She is so comfortable in Lynne’s office now and just makes herself at home which we love as she is happy during this important part of her life.
And secondly…her measurements have mostly all reduced since we started compression in January. Some of them by up to 3cm! We knew to look at her that her feet and legs were looking great and feeling great, but to see in black and white just what the reduction has been is amazing!
We are so proud of Lucia for helping us to manage her condition so well. Children are so resilient and it is easy for adults to underestimate how they may be able to cope in any given situation but Lucia just takes life with Lymphoedema in her stride and it doesn’t hold her back one bit. By allowing us to carry out her ‘rub’ and wearing her compression everyday she is helping us to ensure that we are doing everything we can to keep her Lymphoedema in the good condition it is in and slowing any progression.
So this time we have ordered more closed toe tights as they have been working so well and a pair of closed toe knee high compression socks for the summer. The socks will be trial and error though as we don’t know if they will be suitable for her. The problem with her lymphatic system may be in her thighs, in which case the socks will not be of any use, but we won’t be able to see where her specific problem is until she gets the Lymphoscintigraphy dye test – and that is years away yet.
So we will try the socks so she can have a little bit of a breather from tights on warm days and keep a close eye that it is not to the detriment of her thighs.
All in all, it has been another great week with the reduction in Lucia’s legs and feet and with Max who won Player of the Week in his Football Coaching! And it is a bank holiday weekend. Life is good.
That is wonderful news… I cant wear knee highs as it makes my thigh worse so I mostly wear thigh high stockings or tights but everyone is different in how there LE responds.. ❤️
Be careful with the socks!! My daughter has primary lymphedema and the socks moved the swelling into her groin!! SOOOOOOO difficult to fix that!!! We stayed with tights after that!! 🙂 also try Kinesio (sp) tape! That works amazing and is awesome for hot days when she doesn’t want to wear tights!!
Thanks for the advice…I am definitely not sure about them the more I think about it. I am so scared of flaring something up as we don’t know where Lucia’s problem with her lymphatics is. Did your daughter’s flare up badly and did you get it settled down in her groin? Does she have Primary in her lower limbs and feet? We had been using Kinesio tape on her feet before we started compression – do you use it on her legs as well? Thanks so much for commenting 🙂
We are over the moon Helen – but very wary of the socks. The more I think about it the more I am talking myself out of them as we don’t know where her problem is so we’ll see…
my daughter will be 11 years old next month! She was diagnosed when she was too. They were able to determine the source of the lymphatic deformity by doing a scan called a lymphascintography (sp). She only has the lymph edema in her right leg, it includes from the toes all the way up to the right waist and buttocks. The groin area flared up pretty bad when we used the socks. It pushed all of the fluid into her groin. It took about 3 months to get it under control.
That sounds like a stressful time, I am sure that was hard going for a few months 🙁 glad you have it sorted though. We are desperate to get that test done but have been told it won’t happen until she is about 8 years old and will lie still…that is such a long way off for us to not know exactly what we are dealing with. We think it may be just her feet and lower limbs but that is just guess work so maybe to be on the safe side we should steer clear of socks.
why are they waiting until she’s 8 years old? They did the procedure on bri when she was 2. It helped us Direct her treatment in the correct way. where are you located? They did her procedure at UCLA Children’s Hospital.
That is exactly why we want it done! We are in Northern Ireland and we have been told by the Genetics Team in London that it won’t be done until she is old enough to lie still. We had found a radiographer here in NI who would carry out the test but the consultant paediatrician said Lucia would need sedated 3 times in 90 minutes and wouldn’t do it. So we are stuck even though it is the most important test that needs done 🙁
They didn’t sedated my daughter. They had me give her some benadryl beforehand to make her sleepy. The first part of the scan was tough because it involved the injections but once that was done, she fell asleep. The rest if the day went perfect!
That’s great she was so calm through it. How long did she have to lie?
It was 2 separate scans, one in the morning before the injection. Then they injected and we waited a few hours and scanned again. Each scan was an hour and a half.
Make sure they cleanse and sterilize the injection sites well before and after. A week after the procedure, she ended up in the Pediatric ICU with her first STAPH infection. Moms know best!! Speak up, trust your intuition! ! 🙂
Infections are my greatest worry! We have tried every avenue to get it done and contacted various consultants in England too but no one will do it so far. But it has been a while since we asked so we should ramp it up again and see where we get. We need it!!