Having so much trouble getting my son diagnosed. He is Ana+ raised esr speckled cells aches pains, mouth and throat sores. Rhumo no help xxx

Nathan is 11 been ill a long time.

Has a referral to rhumo and he said as it's rare it's unlikely.

Aswell as what I've already states up there, Nathan has bad migraines, joint and muscular pain, fatigue but can't sleep, raises veins in his skin, red cheeks and occasional res nose especially when really I

Poorly, normally has temperatures too when he's having an attack of pain. I am at my wits end, how so I get him help please x

20 Replies

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  • I'm sorry for all the spelling errors, I'm so tired

    Any help will be useful thank you

  • Hi laura its just so heartbreaking about your wee son it must be so hard watching him suffer like this. I have lupus and as a child i suffered for years with mystery illness and rashes (that was treated as eczema which it wasnt) joint pains that was never properly investigated by a specialist, i had positive ana & aps but GP said many people had false positives and noone bothered to investigate so i wasn't diagnosed until into my thirties (was dreadfully sick many times). I think its definitely positive he has app with a Rheummy, does rheummy think lupus is unlikely? His symptoms sounds very similar to lupus especially with positive ana! I hope his app isn't too far away - keep pushing for answers. Do you have lupus yourself? Sorry cant offer more advice i just hope you & your son get all the help you both need. I know a lupus diagnosis is probably not what you want to hear either, so hope he gets well soon with good news.

  • Hi lauraj558, is it not possible for your son to see a different rheumatologist. They are not all experts with lupus, and being as your son has a worrying amount of indications, I would not waste any more time with this Dr. Ask your GP for a list of rhuemys in your area, and get a referral. Your son must be missing a lot of school over this, as well as healthy social activities with his peers. You can only keep insisting that your son is diagnosed and treated soon. Yes lupus is rare, and yes it is still rarer in males, but not impossible. There are quite a few males on this forum. Keep a diary and take photos of your sons rashes to show the Drs. Wishing Nathan better.

  • Very very grateful for both replies.

    Nathan has been so sick that a few times I have thought he was going to die :-(

    Nathan has an appointment mid May at Alderhay children's hospital after I pushed because last rhumy wanted to wait another few months before taking more bloods. He said he doesn't think it's lupus purely because lupus is rare and rarer in males. I have done months of research and every new symptom is or can be lupus related. The persistent aore throat being the newest. I don't want it to be lupus I just want a correct diagnosis so he can get treat as he is so ill at times. It's frightening. He's had protein in wee when it was a dip test but lab test said it was within limits. He also at times has a wheeze and gets puffy hands and feet. I'm sorry if I've waffled on, I'm just grateful to talk to people who have has the same struggles because I feel very alone and poor Nathan feels "not believed"

    Many thanks

  • Alder hey has a “Centre of Excellence for Childhood Lupus” see their website under Rheumatology. I would push to get an earlier appointment. Depression doesn't cause puffy hands and feet but kidney problems do. I wish your son well

  • Last term he was in school 4 and half days x

  • For that reason alone he should be seen quicker. It is physically and mentally distressing for adults to be recognised as genuinely ill. What must your son be thinking. I'm sorry that I can't do anything to help but please do not hesitate to post at any time.

  • They tried saying he's depressed, I said does that make you be ANA positive?

    They said its unlikely, I said but not impossible, that's pretty much how his first consultation went. Was awful Nathan cried buckets he thought we were going to get help but he came away feeling not believed.

    To talk to people who know, helps x

  • Makes my blood boil to hear medical professionals pulling the tired, old "it's just depression making everything seem worse" card. The depression that people with lupus suffer is caused by the disease and therefore "clinical", as opposed to "reactive" depression caused by some other outside factor. Until the disease is under control, one's depression won't be either. Good luck at Alderhay!

  • A lot of us have come away In tears when told we are just depressed. But we are adults. To do it to children is just cruel. Have everything crossed for alder hey, please tell us how you get on.

  • Hi there don't know if you can bear to go to london but can recommend dr john ionnaou at uchl he sees my two children 17 yrs and 13 years no clear diagnosis for the thirteen year old but dr ionnaou is keeping him on. He is a great man, can also

    Suggest Paul brogan at gosh have heard marvellous things about him as well. It is awful to see your kids suffering, all you want is answers, wishing you lots of luck, c x

  • Hi,

    So sorry to hear everything you are going through with Nathan,my husband was ill as a child which was dismissed he must have gone into remission as he didn't become unwell again till his late twenties after various symptoms,fatigue,discoid lupus and a blood clot he finally got diagnosed with lupus.By this time we had 2 children when my oldest daughter was 10 she became unwell,headaches,rashes,hughes syndrome but due to family history was diagnosed with lupus when she was 11.my youngest daughter developed raynauds,photosensitivity,heart palpitations and lots of other symptoms when she was 15 she has finally been diagnosed with lupus last week aged 17.boys and men can get lupus and it can run in families.I feel for you and can sympathise with how hard it is to watch a loved one suffering, but my husband and older daughter are feeling much better and are coping well with medication and is back to some normality I'm confident we will get my youngest daughters lupus under some sort of control.keep pushing for a diagnosis and there will be a light at the end of the tunnel, take care.

  • Hi

    I am so sorry to hear of all the suffering your son is going through. I have had similar with my son who is now almost 19. He has had various symptoms for several years but not to the extent of your son. He has a positive ANA but still has no diagnosis.(Even though I have lupus) There is an adolescent rheumatology dept at UCL Hospital. (London) Perhaps you can go back to your GP and ask for an urgent referral. My son was first referred to Great Ormond Street Hospital by the paediatrician who he saw originally at our local hospital.

    Wishing your son some better days.

  • I have spoken to prof be readied from Alderhay by email and he suggested I went to GP and got a refer to Alderhay. He attached the email I wrote to the doc referal so hopefully that will make a difference somehow. I hold on to every hope.

    Would you all mind sharing what blood tests you have has and their outcomes please. So far Nats has esr ( always steadily increases ) Ana, DSDNA, IF and all the usual fbc etc. :-)

  • Hi don't let them use the excuse that Lupus is rare in males . My son was 13 when started becoming unwell , took 6 months to get diagnosed and that was due to having a chest x ray which showed his heart looked enlarged but was actually due to having two litres of fluid around ( pericardial effusion ) The months of fevers and chest pain. / exhaustion ( loads of trips to the doctor ) etc was the beginning of what we now know is SLE . He is 16 now . He missed most of year 9 and 10 at school . We have fantastic paed Rheumy in Southampton . Message me if you want to chat as I know it's real hard being a mum to a sick child . Take care x

  • I'm an emotional ball today, I bet you all know how grateful I am to have someone to talk too. Felt very alone and I know it's everyone's misfortune but I feel fortunate to have found a group of people who feel or have felt like we do now. I appreciate that cariow I really do xx

  • I have purple bruises, read nose under eyes and forehead, painful joints tired all the time my GP sent me to a consultant I have been like this now for years he didn't know what it was just blamed it on the steroids a waste of space they think they are God some of them think you are better off going private hope he's feeling well soon

  • I know it's expensive but if you can, go and see a consultant privately. One consultation will cost about £200 but after that you should be able to see him/her on the NHS. I did this with my daughter and it was worth every penny.

    Good luck xxx

  • I looked into this, was going to be £300 for every 2 consultations them £75 for every blood test and quite a lot note for MRI. I have had to stop work to look after him as he's off school so much. Only husbands wage and we just can't do it. I wish so much we could x

  • So very sorry to hear about your son's health... we are in a fairly similar situation with our 14 years old daughter. She has been unwell since the 9th of February, the day after her 14th birthday. First she felt exhausted then started having painful knees, ankles and wrists and then she had a sore malar rash on her face. We took her to the GP who referred her a paediatric rheumatologist at the hospital, to see if it was SLE or juvenile arthritis and got some blood test done (ana, inflammation and esr were all normal). We saw a consultant on the 9th of march who ordered all the blood tests again and asked to come back to do joints ultrasounds. The ultrasounds confirmed it wasn't arthritis and showed no fluids or inflammation. The blood tests were all normal. We saw a different consultant who is the senior paediatric rheumatologist. He said that it wasn't arthritis and thought it was almost impossible to be Lupus because of the blood tests. He said it was possibly a viral thing and her body was in a high alert sending wrong and mixed up pain signals and that they saw plenty of kids with the same problem, that our daughter needed physio, gentle exercice and a slow return to school (an hour a time), naturally we were really relieved he said it wasn't Lupus (even though her butterfly rash was coming back as we were sitting in his office and had been back 4 times since the beginning of the symptoms). She started physio the next week and we were trying to get her to do it at home (without much success). She was still exhausted, very confused mentally at times and saying very odd things (physio said it was due to the tiredness and it made the brain shut down...) and could barely walk. I took her back to our gp to ask him about her facial rash which was back again and he took a picture which was sent the dermatology dept, they said the rash was consistent with a lupus rash and wanted to see her, we are waiting for the appointment and hope she will be seen soon (her appt is meant to be urgent...), we carried on with the physio but couldn't get her to do much at home. Her rash seems very photosensitive, she was briefly out in the sun last friday and her ear lobes got burned and showed little blisters (my husband thought it would be good to get her out but didn't know about putting sunblock on) and her rash had reappeared that evening.Yesterday we went for the physio appt and Ellie felt awful, was very pale with blotchy skin, was very confused, had a headache very weak and in pain. The physio made a list of these and tried to contact the consultant and said she was sure he would want to see at today's clinic, however because of the Easter break there was no space and his secretary said he had looked again at the blood tests results and there was nothing too alarming so would see us next Tuesday. Our daughter hasn't got the positive blood results, however she has the butterfly rash, mouth ulcers, dry eyes, exhaustion, breathlessness, multiple joint pains, can barely walk 10 steps, needs help with the most basic tasks and is mentally not herself and very confused. We are beyond worried and feel we haven't really got a proper answer to why she is ill. I know Lupus in children is incredibly rare but she has plenty of very specific Lupus symptoms and about 5% of sufferers don't have antibodies in the blood test. If her consultant says he is 100% sure it isn't Lupus and the dermatology dept find it isn't though the skin biopsy then we'll look into immunology or accept the "vague viral" diagnostic.

    I know how you feel in complete distress when you see your child so unwell, it is SO awful and you feel completely helpless and would do absolutely anything to see them well again. I think the only way to become very tough and say you are not happy with the diagnostic and want real answers, your son has many symptoms and deserves the best of care, an accurate diagnostic and appropriate treatment. The fact is he hasn't got the care he deserves and it is not acceptable !!

    I hope you'll find answers very soon and get the help your son needs. The St thomas lupus website has an online nurse email address who can give you very specific help and reputable consultant names.

    Very best wishes.

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