More advice please re my 10 year old

[Similia]

First of all I'd like to say what a great site this is, everyone is so helpful, friendly and supportive, thank you. I wasn't sure whether to tag this on to my other post so apologies if I should have down that rather than start a new post. My son is going on a school trip shortly that he's very excited about. He'l be away for 5 days and it involves quite a bit of water sports. It only occurred to me yesterday that he will be wearing a wetsuit and now I'm concerned that it will act as a tourniquet, especially around his right lower leg and foot which remains quite swollen (left foot also swollen but not as bad as right). I'm already worried about him going away and have organised to meet with the teachers and TA's who are going, so that I can describe what they need to look out for. I don't want this condition to limit his life in any way but a wet suit only works if it fits tightly. Has anyone come across this problem, can he wear a wetsuit, any and all advice greatly appreciated. Many thanks.

[Rebec]

I would ask a lymphoedema nurse and/or makers of wetsuits. Or, I would suggest to go to a shop that sells wetsuits for your son to try one.

[Lynora]

Has he tried a wetsuit on yet? How long will they be in open water? My daughter does open water swimming and the maximum time she is in is 30 minutes (there are strict rules about exposure to cold temperatures).

He may find that (if he can get it on - this can be a struggle for anyone!) that it acts like compression and is comfortable. You need to get advice from the event people, who quite possibly will have encountered this before.

[lovesradio]

Hi I have left arm lymphoedema and find that my wetsuit acts just like my compression sleeve for the time I have it on. I have not had any problems from a tourniquet effect at my wrist. But for your son, as his foot is affected, it might be worth buying him the 'boots' as well so that the pressure is more even?

[Similia]

Thank you everyone for your comments and advice. I can't believe I never considered the wetsuit until Friday when we paid the last instalment. I guess my mind was more on the fact that the lymphoedema had spread to his other leg a couple of weeks ago. As well as the potential tourniquet effect I also worry that he will be wearing a wetsuit from half to a whole day at a time. The activities are sailing, windsurfing, kayaking, raft building and paddle boarding. He only needs to fall in the water once and he will be wearing a wet, wetsuit for the whole day so I'm also worried about what this could do to his skin. I don't want to stop him from going but at the same time I'm really worried. I have arranged to have a meeting with the school and teachers/TA's who have been on this trip before and I will try and find a wetsuit with zips on the legs for him. It's so hard trying to figure out the best thing to do. I want the lymphoedema to have as little impact on his life as possible and maybe I'm just being an over-anxious mum but at the same time.........

[Lynora in reply to Similia]

If you opt for the version that may have zips on the legs (they are rare, I'm told) he may not get protection from the cold, and if he undoes them, may not get them re-zipped - so make sure you get advice from the event organisers. Get him to opt for the half day activities, and when he takes the suit off, he should shower and treat his skin with his usual emollient.

[craftinglady in reply to Similia]

Just another thing could you get a teacher to take a look on youtube and they might have a better idea of how to look after him.

[AnneBury]

Re Lynora's comment. The zips bits at the bottom of the leg usually have inserts in them so the leg doesn't actually get exposed.

[Similia]

I've just had a look online and found a children's wetsuit with zippers on the legs. Not sure about the thickness at this time of year 3/4mm but it says it's for all year round, cold water use. I will speak with the event organisers and meet with the school. Hopefully that will cover all eventualities. Thanks again for the advice x

[emlies]

I have left leg lymphedema (primary) and I dive, wearing the full wetsuit for most of a day (you take off the top while you're on a boat, but up to the waist it's on for probably about five-six hours a time.) I see it as great all-over body compression. I wear an older stocking on my bad leg since the first time I tried diving it looked as if the leg got a little bigger, but this makes it easier for the wetsuit to go on! In fact, if I've been doing a couple of days of diving I find the leg in general is much, much better than before. Have never had any "tourniquet" issues.

[Similia in reply to emlies]

Thank you Emlies, that really helps to put my mind at rest especially if you have been wearing a wetsuit for 5-6hours

[emlies in reply to Similia]

Admittedly my ankle/foot is pretty thin, but honestly have never had any issues and actually I do think it improved things overall.

[Similia in reply to emlies]

I've found a children's wetsuit online with zips up the ankles. My husband is going to take my son to the shop to try it on so fingers crossed.

[AnneBury in reply to Similia]

Let us know how the shopping trip goes

[Similia in reply to AnneBury]

Will do

[craftinglady]

Don't you have a nurse you can ask this isn't anything i can help you with as i am in my 70th but the children need extra help and you have to be a very LOUD voice for them.