How do we cope with flares? help!

[Scared & Helpless]

My son is 8 and only disgnosed for two months. We have experienced a flare which is now on its second week. I sat up with him the other night all night and when he roused from sleep becuase of the pain he siad mum why can I not run about and be normal like my friends. He is now on maximum doses of Piroxicam, paracetamol and codiene. We have not venutred down the steriod route nor do we want to. I use hot and cold packs. a tenes machine and warm baths with armoatherapy oils. I have cut all aspartimine out of his diet and try to be careful with his food intake (not as much fruit and veg as he just won't eat it) Use fruit and carrot juice, multivitamins & Omega 3. Any other suggestions? We have now found a wonderful GP who will support both niblet and I and today he has come down with a cold but seems to have less joint pain. Is this a pattern does anybody else have a flare around the time of catching a cold? He has had to let the Karate go for the last two weeks hope to get him into an easy class for tomorrow.

Can I just say thank you to everybody who replies, I don't feel alone in this anymore.

[Clare.T]

It would concern me that my child was not on any disease modifying medicines which help damp down disease activity and hopefully prevent it spreading/ worsening. I'm thinking of Plaquenil the anti malarial drug.
He might need fewer NSAID's - they can be harmful, so he should be having regular tests for liver function and CBC, as well as urine for signs of kidney disease.

Children tend to respond well to treatment but also have a higher rate of systemic involvement, kidney disease notably. So I hope all the right antibody tests have been done and continue to be run at reasonable intervals for signs of worsening disease.

Steroids have their place, used judiciously and can be essential even life saving.

An infection can certainly worsen lupus symptoms and it can be hard to distinguish between the two. It happens quite often that people feel bad and are told it's the lupus again when it isn't so they don't get the right treatment

I hope he feels well enough soon to start his Karate. Developing other interests could be a good strategy too.

All the best

Clare

[Scared & Helpless]

Clare thank you for your reply, he swims several times a week and has a wide circle of friends. Karate is his thing. He will be followed up every 12 weeks in Rhumatology and has his eyes screened again in January. I am new to this and so far the Drs have not given me much information.

[Paulin46]

It sounds to me like you are doing a great job with your son. He is most blessed to have you.

I hope you find answers to all your questions and that your boy can begin to find a happy medium to cope with this disease. Poor little guy........

((((((((((((((((((((big hugs to mom and son))))))))))))))))))))))))))))))

[Lily]

Hi there and welcome :)

I'm sorry your son is so unwell right now, he's so young and it must be very hard for him coping with all of this. There is much you can do to help him by becoming a well informed advocate and reading up on the various treatments and also how Lupus affects us and the things we can do to try and make our lives easier.

This page (in fact the whole site) will give you some information about meds used to help prevent flares and lessen the severity of them. Many of us do have to take pain meds as well but the mainstay of our treatment is control of the disease at cell level, as Clare mentioned and I would think its essential in many of us to prevent serious complications. The young do tend to get more organ involvement and correct treatment of the disease will help avoid that.

http://www.uklupus.co.uk/treat.html

Take care and I hope he is over this flare in a short space of time. Without disease modifying drugs many of us find that life is one big flare with no remissions in between at all.

love
Lily

[Scared & Helpless]

Thank you for taking the time to reply it is early days for us I am busy reading up on Lupus.

[Scared & Helpless]

Thank you for your kindness it is a learning curve for both of us, but he is brave and strong. Going to make it to Karate tonight.

[Paulin46]

Thank you for your kindness it is a learning curve for both of us, but he is brave and strong. Going to make it to Karate tonight.


That is good news! :hehe:

[charlett]

My daughter has bee through thsi a long time. I have to agree that he needs the meds to stop the infamatiom an antibody production. My daughter first became ill at age four. She is now sixteen and may I add sassy. She takes cellcept and plaquinil daily, with out it she barely gets outs of bed. but on iy she is pretty close to mormal maybe one or two bad days a month. It is hard there were day I would just hold her in my arms when she slept at night and internally weep. But life goes on and she is alive and I am gratefull, At times I am angry, but life will get more nomal. There was a point that we did not know if she would walk, she does. And at times I feel such anger. How can a beautiful child go through this? We are lucky to have the medications that we do. I am here for you if you need to chat.You are doing a great job with you son!!!:blush:

Charlett

[peonyprincess]

My daughter was 9 when she was diagnosed. Currently she is not on Plaquinel or any other prescription medication. She does take Aleve or just plain Motrin when she starts to flare. I understand the whole sitting up with the leg aches and such and it is very frustrating. Normally Madi will come and get in bed with me under my electric blanket which seems to help. Fortunately for her, she is able to still participate in softball and soccer. There have been times that she has been playing and has to sit out because she has excessive leg pain and that aggravates her to no end.

It sounds as if you are doing everything possible at this point. Sometimes with children it is just a waiting game. I know when I was young and experienced flares, that is pretty much all my mom could do.



Nancy

[Scared & Helpless]

I am sorry it has taken me a whille to respond I have not been on the site for a bit. My son's knees and hips seem to be his worse areas. He is on daily anti inflamatories should he be on something else apart from steriods? I hope your daughter is ok at the moment. How long do the flares last? We swim alot also now as I feel this helps and we are learning to deal with the pain together. Every day I say thanks for having him x

[Scared & Helpless]

Thank you for your message, I am sorry it has taken me a while to respond I have not been on the site for a bit. It is reasuring to know that others cope with it and that life does go on. My son is soon going for his green belt in karate and I hope we can keep him well enough to do it. Lupus is new to us in my family althought my mum and I are both being tested for it. x

[Scared & Helpless]

How are you? I have not had the time to come on the site for a while. My son is having a little bit of an easire time at the moment but his hips are sore. we have out hospital appointments on Monday next week. Do they screen your eyes over there?
x