How long do flares last? Is this normal

[Scared & Helpless]

I am not sure if this will stay here or be moved to Paeds as my last post was deemed to be in the wrong place. My son has been diagnosed with Lupus and had a really bad spell before Christmas with night sweats, bad joint pain, light sensitivity, stomach pains and skin tenderness especially on his scalp. GP has prescribed codeine for pain and a lotion for his skin he is already on Piroxicam and we are not ready for steroids. Our consultant said yesterday that his symptoms were not showing now (I know that he can walk) that he has hyper mobility and does not show signs of paeds arthritis. He requested bloods but did not test for the Lupus signs as we were booked into the Rheumatology clinic, is this normal? The last three consultants we have seen and our GP have diagnosed Lupus, am I missing something? We just wanted help and advice on where to go next. I feel very despondent with the world this week but happy that my boy is having a pain free couple of days. He has his karate grading in a couple of weeks, how do we avoid a flare? How do I look for triggers I have started keeping a diary. This is all new to us and I am reading as much as I can.

[Clare.T]

Your post about your son was removed to Paediatrics because Paediatrics is the obvious section for dealing with children's rheumatology problems.

It was set up for the purpose of collecting relevant resources and a place where parents with similar problems could more easily contact each other and access paediatric information.

Your previous posts are there.

This forum serves as a resource for the future too when people are using the Archives or the Search Function.

Part of the Moderator's job is housekeeping, ( only a very small part I may add ) or keeping the forum in good order with posts in the sensible places.

We also delete double postings.

There is absolutely no need to complain about management of your posts using terms such as 'censorship' as you said in your ungracious PM to me, or 'deemed to be in the wrong place'.

It just happened that we were busy at the same time.

In fact I have spent a lot of my very precious time this morning researching your problems, collecting invaluable resources and thinking about the best advice to give you.

Answering you here would mean the information will get lost in other posts as time goes by and the information and advice will not be so readily accessible to other parents.

All the best

Clare

In response to, on Symptoms Section




As I said in my PM to you ( which I thought the content would stay private) I felt it was censorship, if you had read my initial post you would have seen it was not a specific paeds problem. I apologise if you have taken offence to my comments but as your role of Moderator's job is housekeeping I can understand you removing double entries but by you deciding that my post was purely paeds could prevent other users from contacting me and providing advice. I am sure you have a very valid job and it is great that you have so much free time to dedicate to this site. I would be happy to receive any information you have to give, have I missed the posting with the information on it?








I am not sure if this will stay here or be moved to Paeds as my last post was deemed to be in the wrong place. My son has been diagnosed with Lupus and had a really bad spell before Christmas with night sweats, bad joint pain, light sensitivity, stomach pains and skin tenderness especially on his scalp. GP has prescribed codeine for pain and a lotion for his skin he is already on Piroxicam and we are not ready for steroids. Our consultant said yesterday that his symptoms were not showing now (I know that he can walk) that he has hyper mobility and does not show signs of paeds arthritis. He requested bloods but did not test for the Lupus signs as we were booked into the Rheumatology clinic, is this normal? The last three consultants we have seen and our GP have diagnosed Lupus, am I missing something? We just wanted help and advice on where to go next. I feel very despondent with the world this week but happy that my boy is having a pain free couple of days. He has his karate grading in a couple of weeks, how do we avoid a flare? How do I look for triggers I have started keeping a diary. This is all new to us and I am reading as much as I can.

[Scared & Helpless]

As I said in my PM to you ( which I thought the content would stay private) I felt it was censorship, if you had read my initial post you would have seen it was not a specific paeds problem. I apologise if you have taken offence to my comments but as your role of Moderator's job is housekeeping I can understand you removing double entries but by you deciding that my post was purely paeds could prevent other users from contacting me and providing advice. I am sure you have a very valid job and it is great that you have so much free time to dedicate to this site. I would be happy to receive any information you have to give, have I missed the posting with the information on it?