Can anyone please help me. My 22yr old daughter and I are trying to get a diagnosis. Looking back her first flare up (isolated was age 3).

[theboss]

12 months ago her skin errupted, starting on her head and eventually covering her whole body. GP for weeks pumped her with antihystomines. Nothing helped and eventually after antibiotics I rushed her to hospital. Steriods where given, conclusion allergic reaction to measles. The skin was left scared. Eventually clearing after another course. It then unexpectedly happened again... I cant remember how many visits we had to the gp and again she ended up in A&E more steroids.. since then she has had another flare up and each day seems to bring new syptoms... Ive watched my daughter go from the life and soul of the party to a young lady totally exhaused..sometimes cant climb the stairs.. in constant pain in her joints taking strong pain killers. Mouth ulcers and jaw pain.. she now weighs 5 stone, headaches pain and has blacked out she had yet more tests revealing e coli in her urine. Her ANA was negative (1st time) she has had this repeated and is waiting results.. she has seen a dermo and he was understanding but had no answers... told us to go back to gp and insist on Rheumo referral which we have done.... there are no appointments for 6mths... any advice...this seems like Lupus to me..no she is on more antibiotics which aggrevates her symtoms!!! She is depressed and lifeless...

[Eleri]

Print off information online about St Thomas' Hospital Lupus Unit. Take it to your GP and request that they refer her there as soon as possible. I wasted time paying to see private Rheumatologists who would not make a diagnosis. I finally got to see a doctor at St Thomas' and was diagnosed that same day. I hope this helps. Good Luck.

[theboss in reply to Eleri]

Thankyou for this information, I will do just that. Its such a terrible thing to watch...so much worse to have! Seems like very few in the medical world are willing to look at all the symptoms as a whole. How are you coping, do you have any advise on how I can best support Jade through this, she is so low in her mood and the gp gave her two weeks of an anti depressent to help her sleep, as this is also a problem.

[Eleri]

Basically, I have to cope as I have two children and work four days a week. Your daughter needs to continue living her life as normally as she possibly can. I was very depressed when I was first diagnosed and I had post-natal depression. Going to work helps me forget about my lupus. I also found a salsa class that I really enjoyed. It's easy to give up and stay in bed but this makes the depression worse. Your daughter needs to find an interest and get out of the house to meet other people. I hope she feels better soon. X

[theboss in reply to Eleri]

Thanks for replying.... I really dont know how you cope with two children and manage to go to work... Jade isnt on any medication for this condition as yet as we are still trying to get a diagnosis.. The only time she gets any help is when I have had to rush her to A&E and they have given us a course of steroids which quietens things down a bit.. we are on a waiting list for consultaion for Rheumatology.. but this could take months...

[Cariow1]

Hi I know how you are feeling.. My 14 yr old son was diagnosed in September with SLE and it's been real tough. He was so down , in pain , no energy etc. It has taken 6 months to get treatments adjusted and he is just beginning to feel an improvement . I can say it has been hell in a different way for me watching my healthy child deteriorate . It took a year of symptoms before diagnosis . If you want to chat message me privately and we can get in touch. I hope you get some answers soon . Big hug sent to you both x

[theboss in reply to Cariow1]

Hi Cariow1 It would be great to chat away from here as we are in similar predicament. I feel so useless at the moment.. Jade is so ill she cannot work and has not for around eight months, I know she is 22 but she is still my little girl. Everyday seems to bring a new symptom, one minute she looks fine, although she doesnt feel it and the next she looks like death warmed up....

[nanny4]

Hi there,sorry to hear about your daughter,it took 26 years for my daughter to get a diagnosis,she had many many probs,from heart,bowel,skin,nuerological,anaphalxis,kidney ,female problems,the list goes on,she or we saw many child specialists and skin specialists,the list. goes on,before she had her twins it was thought that she may have multiple sclerosis,but it turned out that her neuro problems were caused by an undoagnosed spine problem which she has injections and mess for now,and her skin kidney,heart problems are caused by severe systemic lupus,which was only diagnosed a few months ago.she finally got a diagnosis from a Dr she saw at the walk in centre at our local hospital,if she hadn't kept going to the hospital every time her skin erupted in pain and needed antyibiotcs and steroids,I feel she would still be without a diagnosis today.please keep strong and keep taking her to the hospital if necessary,the more it is on her medical notes,the more they will take notice,my daughter is loads better now with all the mess,she was so similar to your daughter,I hope she gets answers real soon,see ifshe can go on the rhumeis cancellation list.take care,Sandy,x feel free to pm me

[theboss in reply to nanny4]

Hi Sandy- how very sad this all is! Luckily for Jade I am a strong person and even tho she does not have the strength or enery to fight this for herself...I do. I will give the hospital a call and see if we can get on that list...if we dont have any joy about her appointment within the next cople of weeks.. I intend to go and ask for referral to St Thomas's.. I know this will probably be a wait too but if we get a diagnosis a little while longer wont make too much difference. What a fantastic site this is. The more I read the more I know as does she this is what she has... I can look back and see that although its at its worst she has had this many years without us knowing. Like so many people looking at one symptom at one time

[nanny4]

Hi there,I was telling my daughter about your daughter today and she said,if you have a camera or a camera phone take lots of photos of any skin sores or any inflammation that is visible,do this each time your daughter has any new break outs,a doctor recommended this to my daughter so when u see a specialist you have your. own visible proof,I know this is only going to help prove what's on the outside but it helped my daughter in the end otherwise some doctors tend to make you feel like a liar,my daughter also said keep going to a.e if your daughter is bad or a walking center if its out of hours.my daughter went to see her old gp today to get him to chase up a brain scan and Chase up tests for her 3 year old twins,who have similar problems,and he apologised deeply for not getting her sorted before now,she had given up seeing him last year as he didn't seem to be on the ball.you are doing the right things,being there and researching things for your daughter,I do the same,my daughter is dyslexic and finds all the forums a bit to much.take care,Sandy x

[theboss in reply to nanny4]

Hi Sandy- thats good advice -we will do this. At its worse Jade had to wrap her head in a towel the sores were so bad it was like it was leaking... this spread all over her body, she was so upset.... at the moment her skin is calm its just evrything else. We live in Cambridgeshire... where are you based? How is your Daughter at the moment? Lisa x

[nanny4 in reply to theboss]

Hi Lisa,we are based in buckinghamshire,i hope today your daughter is feeling ok.it is so upsetting seeing your child suffer like they are,you are helping your daughter by trying to find out what you can about lupus,my daughter is feeling much better now things have settled down,she works fulltime in management,which is stessful,but she says it keeps her going.she was only dxd with sle in November,but she takes 28 tablets on a normal day,more on a day,but as she says,so what,if they help then that's what you do.she is in a reasonably good place as far as the lupus goes,she's a fighter,I think you need to be with this sort of illness.Has your daughter had any help from her g.p?as far as feeling really down? One of my other daughters takes anti depressants as she has major back problems which really get her down,and she feels they help her mood,she had to try a couple of diffetent ones until she found one that helped.is your daughter on steroids at the moment? My daughter had steroid infusions for 3 days when she was first dxd,it helped get her very painful skin sores under control for the first time in 3 years.sorry I do ramble on a bit,ha ha Sandy

[charm81]

I was diagnosed as a teenager and dread to think what my mother was going through. It must be awful seeing your child in extreme pain and not being their usual selves. I hope you get some answers soon. Just have to be persistent like my family were before my diagnosed. 6 months wait is UNACCEPTABLE.

[nanny4 in reply to charm81]

I have to agree fully,6 months wait is not on,it took ages for my daughter to get anywhere,partly because she sat back and waited for people to ring her,most of the time they never did,and she is the one who has skin,heart and kidney damage caused by the lupus.keep nagging at the doctors or the hospital,don't feel bad about pestering people,I sometimes go with my daughter,if she wants me to that is,for moral support but also I remember lots of bits my daughter forgets about,or stuff she thinks is normal,but really isn't.take care Sandy x