Just found out my son has lupus

Hi I'm marnie my son Got bloods took in October as they thought it was porphyria the bloods came back 4 days ago Friday just passed and the dermatologist said I'm sorry it's not porphyria it's lupus but he's border line what does this mean? He's sending him to childrens hospital for sick kids to get more test done as his skins so bad it looks like someone has thrown a kettle of boiling water over his face (butterfly shape) his knees hands fingers and ears all I've done all weekend is cry as I've read up on it now and I'm terrified for my little boy he's only 6 so it's rare as I've read he has no energy feeling sick his eyes burn he has dark puffiness under his eyes his knees already swollen he struggles to walk and wants carried after a few mins because he said the pain in his legs are to sore there's days he doesn't want to get out of bed the school has got him an educational phycologist as they out it down to behaviour and he sees a dietitian and speech and language everyone that's seen him said he's immature for his age but I knew there was a reason to it and I've fought for 4 years to get answers now I know it's lupus I've read up on children with it and everything that's described he has I'm hoping he's seen fast by childrens hospital he has only been giving sun sense ultra and before when they thought it was porphyria he was to put it on twice a day but now they are saying put it on every hour until the children's hospital have seen him the cream calms down the face a bit but it doesn't go away and it doesn't make a difference on his knees elbows and hands he also said he has ryhnods on his hands and fingers I don't keep well either I have type one Diabetes and other health problems my daughter has laryngomalacia she's only 2 and had an operation when she was just one year old so it's tuff with our health and hospital appointments for us all most days I hope someone can help?

22 Replies

  • I hope you get a referral for you son soon so he can start treatment

  • Thank you still no word hopefully soon tho

  • Hi Marnie83, I'm so sorry for you and your son, this is an absolutely terrifying time for you all but please know that you will get help, support and understanding on this site. I know it's difficult to believe at the minute but getting a proper diagnosis is a huge positive and in time he will receive the right treatment by those who fully understand his condition and will be able to answer the many many questions you must have.

    While you are waiting for his appointment I strongly suggest you get in touch with Lupus UK, they have a great range of literature and videos etc which they can send you which will help explain so much and better prepare you for your son's appointment. Also please remember that you cannot trust everything you read online about these conditions, when I was diagnosed I frightened the life out of myself and my family by reading and believing everything! Now 20 years later I still have a good quality of life, there have been difficult times but these are outnumbered by good times. I really believe things will improve for you all in time and do keep in touch with us on here.


  • Hi bronaught.may i know how old you had lupus 20years later?what symptom do you have?my daughter 9years old have low platelet and usually nose bleeding.and doctor said border line for dsdna.its mean lupus.what medication you have untill now?tha kyou

  • Hi Viji, I was diagnosed at 29 so considerably older than your daughter but like many others believe I had it for some time before this. My symptoms were unbelievable fatigue, muscle weakness and swollen fingers and constantly getting colds and swollen glands. I started off on high steroids and hydroxochlorine and anti-inflammatories. Then as newer drugs became available I was tried on different ones to see which suited me best. I'm now on Mycophenolate Mofetil which seems to be doing the job. Again I would advise you to get in touch with Lupus UK and also ask to have your daughter referred to a Rheumatologist who deals with children. Every best wish


  • Thankyou bronaugh.now my daughter take prednisolone and hydroxichloroquine just start since january.because just diagnose had lupus.do you have email if i want to ask you something

  • I have sent it to you in a private message Viji.😊

  • Hi Vijij,

    I've spotted you commenting on a couple of threads with lots of questions and thought I'd take this opportunity to offer you some help.

    Firstly, LUPUS UK has a free information pack available. This can be posted to you or you can download it. You can find it here: lupusuk.org.uk/contact-us.

    Additionally, we have a wide variety of publications that might answer a lot of questions that you have. You can find these here: lupusuk.org.uk/publications.

    I hope these are helpful for you.


  • Thank toy for your support this was a lovely message. All I have done is cry but I'm starting to get stronger and think no this crying isnt going to take it away it's not going to help my poor boy ive been battling qith thw school as I was told to use a sun sense cream every hour on his skin and the school is saying they can't remind my son to put it on he's only just turned 6 he need reminded as he cant tell the time just yet but they contacted my gp and he told them it's on prescription and he's to get it on every hour.the head master said she had a boy with lupus last year and his gave wasn't in the state my son's is so I'm concerned tho Ive spoke with our gp and she said that everyone's different and there's different types of lupus tho the school scared me telling me this little boy was off school a long time when he was diagnosed and trying to get on the right medication I'm trying not to worry until we have spoke with the hospital my son has been galling asleep in class and not wanting to go outside to play as hes exhausted he's really sore in the mornings so it's difficult to get him to school. I read on one site on Google that it can effect the lungs,brain,spinal cord,heart and kidneys that's what's worrying me i contacted lupus UK and got some booklets sent out I have read them and gave them to the school I'm hoping the hospital don't take forever to send out jaydens appointment as it's only been 2 weeks and it feels like forever I'm due to go into hospital myself in a weeks time for 2 operations so I'm hoping they see my son before then but I don't think so I have bought a book placed a photo of his face when I first noticed the butterfly rash then a photo of it at its worset last summer I'm going to write down all my questions and how I see jayden also how he feels he has been complaining his kidneys are sore for a while now but urine samples are coming back fine he's so thin and no energy which is making me worry more as he's not like my 2 year old as she bounces back and has an illness her self but jaydens floored with a cold everything upset him he cries alot which isn't like my daughter me or their dad I told him he has lupus but I haven't went into anything that could or would worry him it's really scary x

  • Marine you are doing everything right it's obvious what a wonderful mum you are! We would rather suffer something ourselves than watch our children suffer it. You're GP is correct no two cases of Lupus are the same, it's good that he is knowledgeable about the condition so many GPs still are not. Would it be possible to keep Jayden off school one or two days a week to ease his fatigue? He really seems to be struggling with that its just an option you could perhaps discuss with the school and you're GP. You should ring the Appointments Department of the hospital and find out when he is likely to be called and make sure it has been marked urgent. It's such a stressful and worrying time for you all but try to stay strong and be assured you are taking all the correct action and you are on the right path to a proper diagnosis and treatment.


  • Thank you but I think any parent would be the same. The school is pushing that jayden should be there 5 days a week until he sees the children's hospital. But I've keep taking him in later in the morning and I've kept him off a few days through the week but schools not happy as he's behind his class mates in work now. He's a very smart boy I feel this disease is getting the better of him. He seen the dermatologist will be 2 weeks tomorrow that was the Friday and on the Monday I phoned the hospital they said they won't get the referral for 3 weeks so that would be next Friday then they need to send out an appointment. I've got a number for a good ryhmatolejest in Glasgow so I'm going to phone him and see what he can do. I was looking into everything I could about lupus and someone had said they had tried this tea and then had their bloods took and the lupus was gone but I can only see that America has it so I will need to see if it cab be shipped my partners worried I have false hope but any kind of hope is better than nothing and it's worth a try. We are going on holiday to Spain in October and I've ordered jayden an all in one suit that goes to his wrist and ankles so I'm hoping that helps have you been abroad before if so we're you ok with the sun etc?

  • Hi Marnie83,

    Bronagh2015 has given you some great advice in both of her comments today. You said you've already been given some publications by us, but I'll just say that you can find more publications and information on our website at: lupusuk.org.uk/publications. Please be careful of information that you can find from Google as there are some sites that are not very trustworthy at all.

    There is not a cure for lupus but with treatment a person, in most cases, can live a normal lifespan. It seems a bit strange that school won't remind your son to apply the sun cream. It might be worth pressing them on this further and if necessary, get a doctor's note explaining the need. Have they said why they won't do this?


  • Hi George yes they have said because the child that had lupus in the same school (he left to go to high school in Aug) that he didn't have to get cream on and that he didn't have a rash on his face they phoned my gp and he told them that mu son needs it on every hour I demanded a meeting with the school or I was going to take my son out school so they said they will remind him

  • Okay, I'm pleased that's all worked out. It's important for them to understand that treating your son as they treated the other child with lupus won't work as no two cases of lupus are the same.

    I hope things continue to go smoothly. Keep us up to date.


  • Once he has been on treatment for a while his rash will go away and his skin will be less sensitive. The skin is alo an organ of the body and as such get inflamed when the immune system attacks are high. I used to put pure zince cream on my son. South Africa is very sunny all year round and my son once his treatment did it's job stated playing sports again. He was and still is an active sportsman. Played cricket, soccer, tennis at school and the Speicialists were amazed at how he was able to do all this. A good frame of mind in parents and keeping up the spirits of the child is so very important. My son went through hell because kidney involvement was so severe, yet here he is today living a normal life and still plays sports. mainly indoor now or at night, not only because of the sun but because he has a good job and works every day. He lost a lot of time at school when he was first diagnosed. he lost his hair, was pale and bloated from the cortisone, but he had good friends and nice teachers. I used to cry so much...I don't know how I got through those times. 20 odd years ago the only material available at libraries or anywhere for SLE was still behind times with old books when they didn't have all the new and good treatments we have today. The prognosis used to say a person with SLE had 10 years after diagnsosis!! I stopped reading and believing all that. I did however find that giving him essential fatty acids but only Omega 3 fish oils helped a lot. The Dr's couldn't understand how he wasn't too ill after chemo, and how his kidneys responded so well so quickly with treatment. I like to think it was faith and the omega 3 helped. Also I used to tell my son to imagine his immune system cells like little soldiers. I said he must tell the T cells to look more carefully at what they are attacking and make sure to not attack friendly cells.

  • Please don't believe too much in miracle teas and stuff. One good thing as I mentioned in another reply here is omega 3 fish oils. it won't cure anything but it helps the immune system, so while you wait for the appt. it can do no harm. And the Zinc ointment mentioned in another reply is so thick and white it is a complete block and zinc is excellent for the skin, one of the best healing treatments. Of course the immune system is causing the attack on the skin and joints so zinc will only help protect and block and soothe, but until Jayden gets his meds sorted and immune system under control, that is all you can do. Let us know how it goes. xxx

  • I would like to echo what Jengo12 has said and urge caution about this tea you have read about. There are many people/companies out there who try to sell fraudulent health products and I would not like to see you wasting your money or potentially risking your son's health. It is important to always ask his consultant before trying any complementary/alternative therapies or treatments.

  • Marnie I would be extremely cautious about any 'miracle cures" especially with a young child. There is no cure for Lupus BUT there are lots of brilliant treatments which let us lead a pretty normal life and I am sure Jayden will eventually do that. I wouldn't worry too much about his education at the moment his health is the priority and you are right to do what is best for him with schooling let the teachers huff and blow they would do the exact same if it was their child! I'm sure by October things will be much more positive for you all and a holiday will do your family the world of good. I go abroad every year as do many Lupus sufferers and have no problems at all once you take necessary precautions. The sun protection suit is a great idea, take extra medication, have a nap every day and just enjoy it! Keep in touch with the hospital appointment office and keep telling them he is suffering and really needs to be seen asap. Try not to be googling stick with the proper official sites like Lupus UK whose info is trustworthy and based on actual research, any Tom Dick or Harry can put anything online and will try to make money from others suffering. Finally please keep reminding yourself 'There Is Life With Lupus '.


  • Aw that's very good to know as I was going to cancel the holiday but I feel we all need a holiday that's why I booked but then found out about jayden and thought oh now he's going to miss out on the holiday aswell when I want him to live a normal life the dermatologist said as long as he stays away from the sun/water and sand he should be fine but he's a child he will want to go in the water and play with the sand. But I will deal with that closer to the time. I'm going to phone the hospital again tomorrow and see if they can tell me roughly when jayden will be seen as it feels like forever when it's your child thank you you've helped and gave me good info x

  • Not sure if you can buy a zinc ointment in the UK. I get it over the counter at any good store or pharmacy. It is a thick white cream and is an excellent sun block. You may have seen some cricketers with it across theri noses and on lips and cheeks. So perhaps Jayden can play at water with a hat on and this zinc ointment on his face and sun block elsewhere. Just for a short while. You are a wonderful mother and so right that you do need this holiday and as a child your boy needs to have fun too. I hope he will get the best and right treatment soon. xxx

  • Glad to be of some help Marnie please keep in touch with us on here and know we will thinking of you and your son. Xx

  • Hi Marnie, so sorry to hear that your son has been diagnosed. My son was diagnosed with SLE when he was ten. He had been very ill and Dr's kept saying the rash on his face is impetigo and allergies. This went on for weeks, until I finally insisted they do blood tests. ( We live in South Africa, but I like to follow this lupus site because it is on of the best.) There is little support online that is in S.A. My daughter and her family live in the UK, and she was diagnosed with lupus when she was 16. She manages hers with diet and tries not to be too stressful. She was on methotrexate and plasmequine for a while. She had such pain that she couldn't walk. Lupus affects each person differently.

    When the results came back my son was immediately sent to a paediatrician who then refered us on the the state hospital as we didn't have a medical aid nor funds for private treatment. Long story short....he had kidney involvement. He spent months in hospital having chemo, and all sorts of treatments. Then we had to go to the renal clinic ever two weeks for years. He had aziathioprine and cortisone for many years. He went into remission at 17 and was off meds and clear for about 5 years then had a mild flare up on and off for the past 7 years. he is 31 one now and lives an active normal life. His kidneys are fine, and it mostly affects his skin now. Try to keep your spirits up for your children's sake. I used to make the hospital visits a fun day out with my son. I would buy him treats and he could have whatever he wanted. While we would be at the clinic for the day, we would play games and pretend we were on a picnic. My heart goes out to you and your children. Remember there are many good treatments and he will be fine, a time will come when he will feel better. Love and hugs to you.

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