Child with SLE

Hi are there any parents if children with SLE on here?, my daughter was diagnosed after years of being fobbed off in Sept and mainly affecting her joints, 4 weeks later she ended up in hospital very poorly and lupus had started to attack her brain (very rare I here), now she is on lots of daily meds plus injection and has to go and have chemo treatment every other week, I am so scared, I am only just learning about this horrible nasty diesease, any info would be appreciated. I worry it's like cancer and it will just spread all over and she will not live long.

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  • Hi magzy,how old your daughter?where your country?.

  • She is just 15, we are in Dorset UK

  • I have daughter 10years old have sle,but her symptom is nose bleeding.My advise you must to find some rheumatologist for consultation how to treat your daughter.

  • She has a consultant and her own lupus nurse , I was just seeing if there were any other children with this nasty diesease and how they deal with it, how bad it is and also if anyone has had it affect their brain??, as we have literally only found out about this I want more insight and info from those living with it.

  • I had Lupus as a toddler and my parents were told that I wouldn't live 10 years. Then at 14 the specialist said I'd live until 20, if I'm lucky. I could go on, but I'll just tell you I'll be 50 on my next birthday. I don't want to offend anyone, but we are a practicing Catholic family and believe in the power of prayer. Your daughter will get through this. I will pray for her.

  • Hi was diagnosed with lupus at 32. I will be 50 next month and I'm very lucky to have two kids. My dad was 90 last week and he has lupus. You are so right I'm a catholic too the power of pray is very important go to mass every week and pray and at home too

    God bless you all x

  • Thank you so much I have ordered the info pack from lupus UK. I feel so much better already reading these wonderful supportive replies x

  • Hi ck384,may i know what treatment you had from 10 years untill now.i'm worry about my daughter.shw is 10years old too.

  • Sorry it took so long for me to respond. From ages 7 to 14 I was taking prednisone. Doctors said that is what put me in remission, but I was told at age 31, I went into remission because I went through puberty at 14. He believes that hormone changes are responsible for Lupus going in and out of remission. I am Peri menopausal and it just went into remission. I tend to believe him. I'm hopeful it will stay in remission now.

  • Wow.you so blessed.GOD bless you

  • I know it's a shock. My daughter was diagnosed at 15, she is now 30 and got married last year. Please contact Lupus UK for help and support.

  • I know of a young Scottish girl who was diagnosed aged 9 & now 18 & leading a very full life despite many visits to hospital for chemo etc. She recently did a Tandem skydive for Lupus! As Kevin said - contact Lupus UK. They will be able to put you in touch with a family who can help.

  • Hi Magzy,

    So sorry to hear your daughter has SLE. Many of us here have suffered terribly whilst being fobbed off for years. Sadly this seems to be common place in the UK. It's something I hope to be able to help change.

    Can I suggest you look at some of the leaflets on lupusuk.co.uk I see they have one on Lupus & the brain.

    My understanding is that SLE is usually confined to one organ & it is unusual for it to spread to others, so although I have the general things like joint pain, Raynard's, rashes, my main organ involvement are my lungs. Kidneys are also vulnerable, but are easily monitored by urine sample.

    On Monday when the office opens Paul or one of the other Administrators will I'm sure contact you to offer a free info pack, or you can request one from the website.

    Hope this helps. Stay strong & don't scare your daughter. We are always here for each other.

    Sarah x

  • Thank you Sarah I feel so much more reassured. I have ordered the info pack and subscribed too. This forum is wonderful x

  • Lupus was only affecting my kidneys for years, but then started affecting my brain and heart before going into remission. But, I'm 49 and have had Lupus for 48 years. Maybe the longer you have it depends on how many organ systems it affects. Who knows?

  • I was diagnosed aged 20 but the consultants think I've had lupus since I was 10 years old. Now 21, ive been told to expect a very long life :)

  • That's fantastic to hear and reassuring for me and my daughter, thank you for sharing xx

  • Magzy, Sorry to hear about your daughter. I am father of 9 year old boy with SLE. What we have learnt is when kids are younger, that impact will be high.

    As each situation is different - your consultant can give detailed opinion of the situation. Please try to arrange 1-to-1 meeting with consultant and ask all the details and eventualities. Its common to have anxiety of what future will bring, with the current advances in medicine, things can improve. The consultant I have met was very helpful and gave detailed outlook on possibilities.

    At there same time there are number of events conducted by Lupus UK, please attend and speak to other carers or patients to know more.

  • Thank you for sharing and reassuring me she can have a life. I will arrange a meeting with her consultant at her next chemo. I know they were as shocked as us that it all happened so quickly. I love this forum and feel so much more reassured already xx

  • ivr had cancer in 2+4 given 6 mos to survive um 51 still here. I have lupus for a yr now. It affects my jounts hair . I have ranalds too. I dont focus ob the disease. I luve my lufe to the fullest. I have a 6 yr old son that needs me. Stay strong n cherish everyday with ur chikd. Put her first n lupus last praying for strength

  • Hello magzy

    Am so glad you found our forum: it's one of the v best of all lupus forums. I, for one, know just how vvvv much this forum can & does help. Certainly, the wonderful replies you've collected are evidence of how much we care and how greatly experienced we are. The staff at Head Office LUK are wonderful too and I'm sure they'll be quick to help you in every way possible both now and in the long run

    Perhaps a bit of my story can be useful to you:

    I'm 63 and was born in the states, but left to live in the uk at 21, unaware I had infant onset lupus. My mother had kept the diagnosis & significance of my flares secret because she had imagined lupus was just a kind of recurring flu or some such nonsense. Also, I'd fallen on my head "from height" as a child (playing blind man's bluff πŸ˜†). I think ma felt guilty about the injury and my lupus too. Poor thing.

    Anyway, back then in the 1950s-70s, lupus healthcare & treatments were relatively few & far between. I grew up innocently thinking I was just a wee bit more "susceptible" healthwise due to my head & spine injury....which of course was combining with the lupus to affect my neuro cerebral function.

    So, the NHS inherited me at 21 unaware of the lupus underlying my multisystem health issues. The NHS knew about my head/spine injury though, and fell back on that as a general diagnostic scapegoat.

    Well, I proceeded to live life as fully as poss...determined to have a wonderful career & marriage, to travel and make the most of opportunities generally while the NHS did its level best to diagnose & treat my growing collection of secondary multisystem conditions as lupus-related debilitation progressed.... with effective systemic treatment only during emergencies πŸ™„...of course I had to learn a lot about lifestyle management + complimentary therapies & practice all that a go go meanwhile!

    Finally 5+ years ago, a brilliant immune dysfunction & connective tissue expert rheumatologist recognised my lupus was underlying everything, and my mother admitted her secret.

    Now I'm feeling less pain & more stamina + resilience than I have since my early 20s...all thanks to the combined therapy lupus meds in my treatment plan...and I have a collection of multisystem clinics giving me close monitoring & care: it's wonderful.

    Sorry for going on at such length...I'll just add that now I understand the NHS is dedicated to giving younger lupus patients the consistently close attention that can really truly help them most. There are much more effective treatments today than ever before. my university hospital even has a popular young lupus patients group where they can meet...I've watched several of these young people bloom as they've responded to treatment.

    I hope something in there goes some way to reassuring & encouraging you

    I'm so glad you're so vvvv close to your daughter & her doctors...+ am so glad you're here

    And I hope you'll let us know how things go

    We're here for both you & your daughter (+ any one else close to you)

    πŸ€πŸ€πŸ€πŸ€ coco

  • Thank you what an amazing story and with all these comments I am feeling reassured and calmer already, I will chat with her consultant and speak to those at lupus UK too. I have ordered the info pack, let's hope together we can get this lupus stable so she can live a normal life xx

  • πŸŒŸπŸ‘πŸ‘πŸ€πŸ˜˜

  • I am overwhelmed and feeling so much more reassured, thank you all for your stories, kind words and advice this means so much to me to know we are not alone. I will certainly keep you all updated. Let's hope the chemo helps and I am hopeful she can reduce all the daily meds in the long term. Love to you all xx

  • Please contact the Lupus Unit in St thomas s London My prof.was Dr Graham Hughes He Specializes in Brain Anti phosphled syncrome And

    S.LE.If they tell you he has Retired Ask Where he Practices Private(HARLEY STREET I THINK)

    He had a jnr dr DAVID ? Sorry cant remember his surname, All the best, Normax

  • Sorry your daughter has SLE.

    Please also read the following sites about "sticky blood"/Antiphospholipid/APS/Hughes Syndrome. (All the same thing, a related problem that can cause neurological symptoms)

    hughes-syndrome.org

    healthunlocked.com/hughes-s...

  • Thank you that's my homework on my night shift tonight then x

  • Hi Magzy,

    I'm glad to see that you have received loads of helpful and supportive comments from the community here - they're a great bunch!

    It's good to hear that you have ordered one of our free information packs. You may also be interested in looking at our full range of publications online at lupusuk.org.uk/publications/ the factsheet, 'LUPUS and the Brain' may be of particular interest. We also have a booklet aimed at young people with lupus which may be helpful for your daughter. You can find out more about this at lupusuk.org.uk/lupus-in-you... - if you would like a physical copy of this booklet posted to you, please send me a private message or email paul@lupusuk.org.uk with your name and address.

    Please be assured that lupus is not like cancer and whilst it is a serious and complicated illness, it is usually well managed with treatment and adjustments to lifestyle. Most people with lupus will live a normal or near-normal lifespan.

    If you ever have any questions, please just post them here, or feel free to contact me.

  • Hi Paul, thanks for the info. I have printed off alot of the publications already, the website is superb and it's nice to know we have a local group in Dorset which I will be getting in touch with. I will call you if I need anymore info or any concerns, but for now I am feeling alot more positive that this can be managed with thanks to this group and your website. Xx

  • Hi Magzy, I am not in UK but follow this site because it's one of the best and we don't have anything like it for South Africa. My son was diagnosed at age 9 and he is 31 now. he had kidney involvment and had to have chemo as well. He was in and out of hospital for a long time. So I know how scared you are. 20 years ago we didn't have the internet or support groups like this. I was devastated. Also had not ever heard of SLE. Dr's usually don't say aye or nay when it comes to diagnostics and prognosis. I think they are taught that. But rest assured, there are really good treatments today and lots of medical science advancements all the time. He eventually went into remission after years on azathioprine and with some help from cortisone, after his initial chemo therapies. He has ocassional flare ups but they are quickly treated with meds and he goes for many years without treatment in between. He has always played sports even when he was being treated. Dr's couldn't believe it. Prayer is good as some have mentioned. And having a positive mindset and making sure your child knows that she will get better and have a normal life. xxx Forward one day at a time and a healthy diet.

  • Thank you so much, with the help of this group and good family and friends I feel so much more positive. We have our 2nd session tomoz so I will be asking lots of questions too. So glad to hear you son has managed to lead a good life, xx

  • Hi Magzy, sorry to here about your daughter. My daughter's lupus began with joint pain and eventually affected her brain. Spent 11 days at Boston Children's Hospital. That was 8 years ago. At times it has been very challenging, many medications and doctors visits. Many wonderful things have also happened in the past 8 years. My daughter went on to graduate high school and college and is getting married tomorrow. Try to be strong and stay positive, your daughter will need your strength and support moving forward.

  • Thank you this is just music to my ears snd really makes me feel so much more positive about the future, I needed to hear that someone else has also experienced this and do not feel so alone, enjoy the wedding πŸ’

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