Advice please re my 10 year old.: Hi, I've come home... - LSN

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Advice please re my 10 year old.

Similia profile image

Hi, I've come home today after taking my 10 year old to see a therapist at the lymphoedema clinic. He was diagnosed with primary lymphoedema in his left lower leg when he was 8. 2 weeks ago he developed swelling in his right lower leg (lymphoscintigraphy, approx 18 months ago showed normal uptake of dye in right leg but very impaired in left leg). He was seen at the clinic last Friday and measured for a compression garment for his right leg. Over the weekend his right lower leg and foot swelled to the point where he couldn't put his shoes on, pitting oedema and discomfort. I knew it wasn't cellulitis but obviously worried especially as school starts next week and he can't get any shoes on. Took him back to the clinic this evening and just had the impression from the therapist that he was the last patient of the day and she just wanted to go home. She kept telling me that hot weather can cause swelling, that he had been exercising heavily at the weekend (she said that not me!!!), that his foot measurement was the same as before, and his leg was only a few mm larger than it was on Friday. I asked to see her written measurements and in fact his leg had increased by 2.5cm since Friday. She only made one measurement of his foot, at the base of his toes and told me there was no change in size, I kept telling her that his actual foot has ballooned in size (although that was pretty obvious) and that he was able to wear his shoes to his appointment on Friday but can't get them on now. Even my son said afterwards that she didn't listen. She gave me a handout with some exercises on it and applied kinesio tape. When I asked why this had happened to his right leg she just said she didn't diagnose. Am I wrong to be shocked, am I overreacting? 2 weeks ago his right leg was normal and now it's bigger than his left and he can't wear shoes. Sorry for the long, rambling post, just feeling quite unsupported with this. All advice gratefully received. Many thanks.

24 Replies

Hi Similia - I have sent you a personal message.

I suggest you call the Lymphoedema Support Network 020 7351 4480 (they also have a website lymphoedema.org ) . They won't be open over the bank holiday weekend so it would be good to call them today. They are best placed to give you advice on what to do. In the longer term they have free membership for children and work with a children's/ family group.

Similia profile image
Similia in reply to AnneBury

Many thanks AnneBury. I took your advice and contacted the support network, who were very helpful.

AnneBury profile image
AnneBury in reply to Similia

Very pleased to hear you are getting guidance. I have primary lymphoedema and it started in my right leg/foot when I was 11 and then in my left leg/ foot when I was 30 (both below knee). My swelling stabilised many, many years ago and I always reckon my lymphoedema hasn't really stopped me doing anything I wanted to do. It has always worried my mother far more than it ever worried me. Shoes are difficult. I am used to wearing shoes that are actually too big (length wise) but get held on with lace ups. I do have "prettier" shoes but for general use I buy much bigger sizes and hold them on with the laces. You would think I would fall over the end but I don't. e.g. I do lots of dancing and wear lace up dance trainers. I should wear UK size 6 but wear UK size 9 and all is fine.

Similia profile image
Similia in reply to AnneBury

Many thanks Annbury. We went one size bigger and got adult trainers that he doesn't find uncomfortable so that's a huge relief :-)

You are great makes my bad days seem small as at 70 i was first diognosed so a lot of freedom before this monster took over.

Similia profile image
Similia in reply to craftinglady

Thanks Craftinglady, I guess we just do whatever has to be done. I do feel bad for my boy, especially when he gets upset about it and try not to let it affect his life.

AnneBury profile image
AnneBury in reply to Similia

Simila, while I quite appreciate that people are all affected differently by their lymphoedema most of us manage our lymphoedema fine and just get on with life. I think that particularly applies to the primaries who are affected from a younger age. I have also realised that many people who have problems with their lymphoedema have other medical issues as well and the other medical issues then distort the impact of their lymphoedema. I say this because the Internet is great for information, and sharing, but can also show the worst possible case scenarios rather than the reality for most. I say this as a 60 year old who has been affected by lymphoedema since the age of 11, worked full time in senior jobs, travelled the world, goes skiing, scuba dives etc.

Similia profile image
Similia in reply to AnneBury

Thanks AnneBury for the reassurance. I put up another post but see from your reply that you have gone scuba diving. My son has a school trip coming up where he will have to wear a wetsuit. I'm worried that the tightness of the wetsuit around his ankle may act as a tourniquet, especially around his right leg which is the most swollen. In your experience, is this likely to happen, should he wear a bigger wetsuit? Although that kind of defeats the purpose of a wetsuit as he will get too cold if it is too big. I would appreciate knowing how you managed it. Many thanks.

AnneBury profile image
AnneBury in reply to Similia

My problem has been more around actually getting my feet into the wet suit, those with ankle zips are easiest and I don't necessarily zip the bottom of the leg bit all the way down. A bigger size should be fine for the purpose of a wet suit. They work because the water between your skin and the suit warms from your body so a bit if extra space shouldn't matter. As for the tourniquet bit I don't feel qualified to comment. As an adult I wouldn't worry but obviously judgment is harder for a child. Will you be getting the wet suit for him before he goes or will he just be given one to use when he gets there? If you are getting one for him before he goes then you can look at exactly how it grips around his ankle.

Similia profile image
Similia in reply to AnneBury

They will provide the wetsuit. I didn't realise you could get ones with zips on the legs. I was hoping to avoid buying a wetsuit as the trip was expensive enough. We've only just paid the last instalment now as well as paying out a lot of money on some trainers that we could actually get on his feet. He's going in a couple of weeks and it looks like I'm going to have to try and get him a wetsuit now :-(

AnneBury profile image
AnneBury in reply to Similia

I do think it depends on just how fat his ankles are. Overweight children have very fat ankles, as well. I think you need to find a shop that sells children's wet suits and go and try some on. That way you will know what works and what doesn't. A larger ordinary wet suit may be fine. Then you don't need to buy one just feedback to the teachers. Also he may need a bit of help from a teacher getting his feet in & getting the dam thing off. My husband has had plenty of experience helping me in and out if a wet suit.

Similia profile image
Similia in reply to AnneBury

Thanks AnneBury, I know exactly what you mean :-) The main problem is the right leg which is quite swollen with obvious pitting oedema. I think that maybe we could find somewhere that sells them and have a dry run at trying them on. Maybe I'll get lucky and won't have to buy one! Thanks again for the advice.

LymphSuppNetwork profile image
LymphSuppNetworkAdministrator

Hi Similia - I am so sorry that you are having such a worrying time. There are often changes when a young person approaches puberty and at 10 your son may well be entering that stage in his life - you do not say where he had his lymphocyntigraphy? I would suggest that, as your therapist does not feel able to diagnose the changes, that you approach your GP to get a referral back to the specialist centre that carried out his lymphocyntigraphy to ask for a reassessment.

Thank you very much for your support today. I have managed to get an appt at St Georges to see a Dr on the 9th Oct. Apparently there are no Dr's around in Sept and he's been slotted in to the dermatology clinic. Do you think it would be worth me taking him to his GP to get another lymphoscintigraph done rather than wait until Oct? I'm keen to get things moving and it's very expensive to get done privately. Still trying to get some advice about footwear for school on Wed if he still can't get his shoes on but haven't yet been able to speak with anyone at the hospital.

Thank you again.

Whitesugar profile image
Whitesugar in reply to Similia

St George's will want to do their own lymphoscintigram. Definitely don't have it done anywhere else as it may not be useful.

LymphSuppNetwork profile image
LymphSuppNetworkAdministrator in reply to Similia

You are more than welcome - I would not get a private lymphocintigraphy done as Professor may decide it is no the right way to go. I am not sure just how swollen your sons foot is but Clarkes do a range of very wide fitting shoes which may help him - It may be a good idea to contact his school to discuss what he can wear as you may only be able to get Velcro trainers in the short term.

Many thanks. I had his feet measured on Saturday and off the scale width wise. We already have an agreement with the school that he wears trainers but there was nothing in the children's dept that would fit. I did mange to find some adult trainers, one size bigger than his feet, with velcro, that he was able to get on that he didn't find uncomfortable thank goodness. They're gortex so waterproof.

Thank you again for your support.

You are quite right to question advice given. I am sure others will have more xperience with childhood lymphoedema. But what my personal opinion is , is that we take things much too calmly, lying down etc. There is no excuse for the way we are treated, and I am keen to get the NHS undertaking its obligations.

Currently I am sitting on two NHS committees with massive buegets to open 'new' clinics - and a budget that stretches to bring in Nurses from USA at salaries of £50,000 p.e. - Surprisingly the Management Consultants leading these initiatives are American-owned.

I have had tremendous support from L.N.S, but realise they possibly can't get involved in jumping up and down - but if you need anyone to let your hair down with do contact me on verite@greenbee.net

Similia profile image
Similia in reply to veriterc

Hi Veritec, I certainly plan on writing a letter to the hospital about our recent experience there although thankfully this is the first time we have been treated in such a way. I don't know what the situation is with physics but I know there is a massive shortage of nurses in the UK and especially London due to cuts in student nurse places and low salary. It is a shame that some of the money used to recruit abroad and use agency nurses isn't diverted to nurse salaries and increasing uni places but that seems far too sensible :-(

Hi I've got two boys with primary lymphoedema, one has it from the waist down, he started in one leg and his privates and it spread to his other leg.

He doesn't seem to suffer from much fluctuation in his swelling but my eldest suffers with it in his lower leg but he can get almost like hives and a very mild type of cellulitis ( he doesn't get the usual signs) his leg just doubles in size and it becomes painful.

Sorry for rambling but when he has an episode he takes it easy take antibiotics and elevates his swollen leg till the symptoms subside, but each time it happens his swelling gets a little larger.

I hope you find some relief for your son soon.

Similia profile image
Similia in reply to Mater

Many thanks Mater. Sorry to hear that both of your children have lymphoedema. Luckily my daughter seems to have been spared it (she's 13). How old are your boys and when did it start? What do you do about shoes? Sorry for all the questions.

Leg elevation helps coban tape helped me cellulitis is a funny thing it's left one my legs browner each time so cellulitis is difficult to distinguish Dr may put mind at rest only play exercise with stockings on if you're not happy with clinic ask Dr to refer you elsewhere

Similia profile image
Similia in reply to Wheeliespice

Thank you Wheelespice. It's not so much the clinic as the therapist that I wasn't happy with. His new compression garment arrived on Thursday, he's been wearing them very day since then. Too early to tell at the moment but not much difference in leg size yet. He's been very good at doing his exercises, bless him. Kinesio tape didn't stay on for long, never heard of cob an tape, I'll have to google it :-)

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