• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Greetings - type 1 and lymphoedema

W

wsmum

Well-Known Member
Messages
86
Hello
I'm mum to a 13 year old boy who has had primary lymphoedema all his life. For the last month, he has had a deep leg infection that wouldn't completely resolve despite IV antibiotics. Last week, we had the additional diagnosis of type 1 diabetes ... double whammy. He is so much better now he's started insulin and even went into school for a while yesterday and today. IVs continuing until Saturday, then a month of oral antibs.
He is being a real trooper but I am very worried about it all ... I do hope there are other people on this forum who can help us (although I wouldn't wish both conditions on anybody!). Particularly interested in talking about injection sites (his lymphoedema is in his legs, so that rules them out and he is very slim), any additional foot care issues, whether antibiotic prophylaxis is worth considering and so on.
Lymphoedema is badly supported in the health service so I suppose the silver lining to all this is that he might get better care for his legs through the diabetes support we get, which so far seems pretty good. He has also been able to throw his glasses away which he was delighted about.
Thanks everyone
Catherine
 
Hi,

Sorry to hear about your son's diagnosis.

But the improvement once starting to take insulin is nice to see them almost bounce back with energy as he must of been feeling terrible!

Forgive my ignorance as i'm not sure what primary lymphoedema is, legs aren't the only available injection site, as you could use the whole tummy area, which is better if he's quite skinny. When shown properly you could also use the upper arms, this isn't really shown anymore but if you can't use certain areas in sure it could be suitable to give other areas a break! You can also use the backside but as he's 13 i'm not sure how he would feel if you are giving the injection as i found it hard to be able to see to do it myself!

You should get his feet and legs checked at annual three monthly appointments and also see a chirodpodist which would be useful for his other condition so maybe a small silver lining indeed.

Theres plenty of parents here with children of all ages to give good advice :)
 
Thank you for your reply!
It will be good to see a chiropodist as his feet and legs are quite swollen by the lymphodedma (basically lymphatic fluid that can't drain because his lymphatics are faulty, which makes him vulnerable to infection). Also interesting that you can use the arms - right now he's fine with the tummy area in fact but it's one to bear in mind.
His main problem is feeling ravenous all the time, like any normal teenage boy (it's nothing new ...)! His blood sugars are quite good so that's great, but I don't feel like rocking the boat by letting him have a massive bowl of breakfast cereal between meals, which is what he'd like to do ... So it's nuts and oat cakes and the like for the time being. We haven't been taught carb counting yet and we are very keen to learn, as I'm sure that will help a lot.
Right now he eats 3 meals a day with a small snack in between each meal and at bedtime, but for a growing lad it's not always enough. I think he's catching up a bit too after losing weight during his illness.
I'm quite stressed at the moment getting to grips with it all, and feeling so sorry for my son. We have a nice diabetic nurse but you have to leave a message on the answerphone and they ring you back, and every time she does we are out picking up our other child or something ... Hoping to talk to her in person tomorrow. We have a meeting with his consultant on Thursday week so I will have a long list of questions!
Thanks again and bye for now
Catherine
 
Hi Catherine, I'm sorry that your son has been diagnosed type 1. It sounds like you both already have a lot to deal with without this on top. Feeling very hungry is normal after a recent diagnosis. I remember my daughter eating so much when she first started with injections, it will settle down after a few weeks and then he'll be a like an ordinary hungry teenager!

There is a lot to learn in the first few weeks and months so I'm sure you'll have a lot of questions. This forum is invaluable both for the emotional support and practical advice.
 
wsmum said:
Thank you for your reply!
It will be good to see a chiropodist as his feet and legs are quite swollen by the lymphodedma (basically lymphatic fluid that can't drain because his lymphatics are faulty, which makes him vulnerable to infection). Also interesting that you can use the arms - right now he's fine with the tummy area in fact but it's one to bear in mind.
His main problem is feeling ravenous all the time, like any normal teenage boy (it's nothing new ...)! His blood sugars are quite good so that's great, but I don't feel like rocking the boat by letting him have a massive bowl of breakfast cereal between meals, which is what he'd like to do ... So it's nuts and oat cakes and the like for the time being. We haven't been taught carb counting yet and we are very keen to learn, as I'm sure that will help a lot.
Right now he eats 3 meals a day with a small snack in between each meal and at bedtime, but for a growing lad it's not always enough. I think he's catching up a bit too after losing weight during his illness.
I'm quite stressed at the moment getting to grips with it all, and feeling so sorry for my son. We have a nice diabetic nurse but you have to leave a message on the answerphone and they ring you back, and every time she does we are out picking up our other child or something ... Hoping to talk to her in person tomorrow. We have a meeting with his consultant on Thursday week so I will have a long list of questions!
Thanks again and bye for now
Catherine
Click to expand...

If he's happy with he's tummy that's great, i find it the most comfortable place as it's a typical fatty place :)

I'm glad his BG's are good so far :) he's likely to put the weight back on pretty quickly, and it's normal to be very hungry shortly after diagnosis too.

It always helps to jot down questions as you go, i usually always walk out the hospital thinking '**** i forgot to ask that' ... it's good you have a nurse and sounds like a good team that are getting back to you quickly, even if sometimes you miss it due to other resposibilities :)

Hope your meeting with his consultant goes well.

It's normal to feel stressed, worried and sorry for him. But kids seem to take it in their stride. I bet he's just happy to feel better again.

Sounds like your doing a terrific job so don't worry :)
 
Back
Top