Advice on juvenile SLE onset & hereditary - LUPUS UK

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Advice on juvenile SLE onset & hereditary

bhuebhek profile image
bhuebhek

Hi everyone, I was diagnosed with SLE back in 2017 when I was 30 years old. It was like being struck by lightning, I was super healthy and suddenly... Currently it’s manageable with azathiophrine and hydroxychloroquine. I have a 2 years old daughter, she looks perfectly healthy. I’m looking information from those who have childhood/teenage-onset lupus, if lupus runs in your family? My mom doesn’t have it but my father had ankylosing spondylitis. I just try to find out the possibility of my daughter having lupus one day. Thanks a lot before for reading <3

-dee-

28 Replies

Hello bhuebhek

I haven'y as complete answer, but if you go tot he "home" page here, you'll find a link (on the right hand side) to a series of LUK leaflets. The one on "Incidence in the Community" says,

"Will children of people with lupus get lupus?

Because so many genes are involved in the development of the disease (only half of which are inherited by a child from one parent with lupus), and because environmental triggers have to occur during the life of the individual to make the disease appear, it is not common for the children of people with lupus to have lupus. Most studies have shown that about1 in 20 people with lupus will have a close relative (mother,aunt, sister, brother; less often father or uncle) with lupus. Occasionally the baby of a mother with lupus will be born with a special form of lupus called neonatal lupus syndrome, due to the passage of certain antibodies (anti-ro and/or anti-la) from the mother to the baby during pregnancy. This form of lupus only lasts a few months, as the baby destroys the antibodies from the mother and does not make any more itself. It does not predispose to lupus in the future in that child"

Hope that helps x

bhuebhek profile image
bhuebhek in reply to whisperit

Thanks a lot for your response!I’m wondering how vigilant I should stay about COVID-19 with her. Whether corona infection would trigger her lupus (incase she’s a carrier) or not. Now that I could get vaccination people are encouraging me to put her in the daycare. But I’m so afraid that she would get infected thus activating her lupus..

whisperit profile image
whisperit in reply to bhuebhek

The short answer is "I don't know".

As far as I know, the science hasn't found a clear link between COVID infection as a trigger for longer term immune problems. But that doesn't mean it might not in the future.

So I can only say what decision would suit me and my temperament. First, I'd remind myself that there's no concrete evidence she has or is at higher risk of having lupus, only a theoretical possibility that she *might* be more susceptible. Second, I'd reflect that I'd go mad with anxiety if I decided to worry about every infection that came along. I think I'd end up trying to make a decision based on whatever I'd have done had I not got your diagnosis. But of course, that's just my perspective. x

bhuebhek profile image
bhuebhek in reply to whisperit

“decision would suit me and my temperament” is a very valid advice! ❤️I’m suffering so much from anxiety and depression since I have lupus.

But also I was very traumatized with the view of my daughter in the hospital post-partum for almost 2 weeks. It was just too many cables and needle attached to that little body of hers..

Hi Dee. Genes and their interaction with the environment ultimately play the largest factor in determining if one gets lupus or not. My mom has Crohns, my father type 1 diabetes and my grandmother had lupus. Pretty sure my father and sister also have mild lupus but they refuse to get tested. I have a lot of autoimmune stuff in my family. I think I had lupus as a child but just didn’t know. Lots of rashes, eye problems, weird MSK stuff when I was a child. I had some more serious problems during grad school and still went undiagnosed. I made due until I got pneumonia in 2017 which did me in at age 33. Out of all my family, I seem to have gotten it the worst and earliest. I also worked the most even while young..... earned my MD PhD which was very stressful and then was working as a physician in academia 80+ hours a week before I fell ill.

The reason I tell you all of this is because genes do matter and your children may be susceptible but it also depends on how they grow up, their health and stress levels. I grew up working class. My diet was very meat and carb heavy. My parents both smoked in the house (which was like 700/800 sq feet). I worked in labs around carcinogens and chemicals for over 10 years. There were a lot of things that could’ve set me off. I don’t want to scare you into being a helicopter parent but just be mindful of and keep a list of things you might find odd. Children describe the most common things and ailments in the weirdest ways.

I don’t know if I’d have wanted my parents to be more protective of me now knowing what I know. I was always tired and a napper when younger but just pushed myself to be like any other normal child. I don’t know if I’d change that or if I’d be any better today with changes. It’s good to be vigilant but I’d maybe be discreet so my child didn’t sense my worry.

Hope this helps a little from the perspective of a child doused with autoimmune genes. You can’t really control it but a watchful eye can’t hurt. Sending hugs. ❤️xx

bhuebhek profile image
bhuebhek in reply to Jmiller623

just wanna say im in awe of you and your achievements 👏💪🏻my diagnosis came at the end stage of my phd work. I was very fortunate to get the diagnosis very quick because my butterfly rash is always very prominent. I guess the symptoms were there long time before but I got distracted from work.

I was working so hard just like you, basically I was only working, didn’t really have a life.

After suddenly almost dying, I put everything immediately down to zero. I’m so lucky I have very understanding boss who supports me no matter what. I guess because she also have sick kids.

I started working from home, from my bed precisely attached to a heart monitor, and took students to do my dirty bench works in the lab ✌🏻

I’ve put my thesis (just have to finish writing it) on ice for while now. Your story motivates me to finish it as soon as possible when the circumstances allow me 🥰

Jmiller623 profile image
Jmiller623 in reply to bhuebhek

As they say ignorance is bliss. Had I been diagnosed earlier, I might have taken it a little easy on myself. Like don’t get 2 crazy long, hard degrees and go into a specialty that is notorious for working people into the ground. Necessity of profound work ethic is what attracted me to these specialties. I had bumps along the way.... failed an exam here and there when I was probably flaring. But knew what I was capable of so I just kept going. Had I known I had lupus, I probably would’ve asked for accommodations. Hindsight is 20/20. But I still think getting pericarditis and “mono” with low cell counts in my 20s would’ve set someone’s alarm off. As a physician, I look back and think what the hell were they thinking when they thought I had Cat scratch fever or mono!?

There are pluses and minuses to not knowing. I can’t say I’d wish to have it any other way. I am so happy that your boss is understanding. I refused to give up, was refused accommodations and was ultimately fired from my job. A supportive superior is a God send. Hold on to them and make sure you network through them because nice bosses are usually connected to other nice bosses.

Get that thesis done!!! Set aside a time every day to even write a paragraph or two. That’s what I did when studying for boards because I knew cramming was no longer an option. I’d study 2 hrs everyday 4-6 pm like clockwork for 2 months. I’ve found things must be done piece mail these days. Overnighters and late nights are a thing of the past for me. I can’t even fathom how I did shift work and had night float (7pm-7am for a few weeks) right into days again.

You can do this Dee. You’re almost there even if it feels so far away. I am so happy that my story motivated rather than worried you. Anything is possible for us.... just at a much slower pace. Also hoping your daughter has no issues.

Hi bhuebhek. Here's my thoughts as a mom of a kid with type 1 diabetes- another autoimmune disease believed to be a result of genes and a viral trigger. There was no history of autoimmune disease in mine or my husband's family when my son was diagnosed. I developed UCTD a few years later but is it related? Who knows? He was never sick as a child. I did all the things you are supposed to do, breastfed, organic food, healthy diet etc. It still happened. His diagnosis makes my other two kids much more likely to develop it but so far so good. But apart from just being aware of it as a possibility for them, we have just continued on living as healthy a life as we can, ensuring they follow covid protocols and let them get on with their lives. I would hate for our fear or worry to limit them in any way, if that makes sense.

It is so difficult not being able to be more certain how things will turn out - another one of the joys of autoimmune conditions. Finding a balance between being watchful but not worrying about what may be sure is a challenge, especially with covid. But the chances are she will be just fine and if in the future things do develop, she will have a mum who knows exactly what is going on. Wishing you the very best. S

Jmiller623 profile image
Jmiller623 in reply to Salzer

Well said Salzer!!!

Pumpkin2009 profile image
Pumpkin2009 in reply to Salzer

Salzer, How old was your son and what symptoms did he show that led to his diagnosis? My grandson is 12 and has some definite lupus symptoms or something. I do have lupus and am hoping his symptoms are nothing serious, but am concerned. I am trying to convince my daughter to get him checked out asap before more symptoms of whatever is going on doesn't progress.

Healing hugs.

Salzer profile image
Salzer in reply to Pumpkin2009

Hi Pumpkin. My son was diagnosed with type 1 diabetes aged 5. Symptoms are very specific and usually come on very quickly- most commonly thirsty all the time, peeing all the time and tired all the time. Kids will get very sick very quickly if they are not diagnosed soon after these symptoms start. If he has these symptoms you would need him to see a doctor ASAP. But if you think it is lupus-like symtoms, lalSD who has posted below has daughters with autoimmune disease would probably be able to help more than me. Really hope he is OK. Such a worry for you. Let us know how you get on. x

Thank you for your response. I am sorry I was thinking lupus, not Diabetes which I know is very serious. One thing, the autoimmune diseases are such a mystery. I hope your son is doing well. I think the genetic component may be there, but needs a trigger which adds to the fun. Wishing you and your family all the best.

Healing hugs.

Salzer profile image
Salzer in reply to Pumpkin2009

They sure are Pumpkin. My son is doing great thankfully. A teenager now! Really hope you get to the bottom of things with your grandson too. x

bhuebhek profile image
bhuebhek in reply to Salzer

I’m not sure if I would have emotional capacity for taking care sick kid(s). You’re very strong woman thus inspiring! Thank you for sharing ❤️

My daughter came out blue + green water when she was born. It was expected like that, there were 4 doctors and chief-midwife during my “normal” labor so everything was taken care of very quickly. We both had to stay in the hospital for almost 2 weeks although I was doing pretty ok. I don’t know how it is in UK, but in Germany one could practically go home 2 hours after delivery if everything was fine.

I was just so traumatized seeing this little innocent creature attached to so many cables here and there, my heart was bleeding 😭 therefore there’s always this anxiety if something would happen to her.

Covid triggered Graves’ disease for me sadly in Jan 2021 (no symptoms prior to covid) advised I must have had a predisposition kicked into active mode by covid

Previously referred in Jan 2020 to rheumatology for Lupus investigations due to many symptoms of Lupus. Tested ANA 1:80 weak positive Aug 2020 and thyroids checked same time (thyroid levels were normal at this time).

Still waiting for face to face with rheumatologist re lupus

Family: mum has lupus and hypo, aunt has Graves and beckets.

Daughter sadly has similar symptoms to me but no testing as yet for lupus (despite me nagging her she’s 20 years of age ). She’s always suffered joint pain from a small child, diagnosed discoid eczema as a child and now has butterfly rash!

My lupus symptoms started early 40s. Now 47.

Think it’s something you just need to keep an eye on. Sounds like you’re on the ball and educated as to the symptoms. Hopefully, you won’t have to act as an advocate for your child. Fingers crossed x

Best wishes x

bhuebhek profile image
bhuebhek in reply to Michellear

I’m sorry about your Graves’ disease. I hope it’s manageable? I had several thyroiditis that led to temporary hyperthyroidism, of course nothing compared to Graves’. I hope also your lupus symptoms will be clarified soon 🤗🤗How is your daughter dealing with her symptoms? Did they limit her to do activities with her friends or did she ever feel left out?

Michellear profile image
Michellear in reply to bhuebhek

Hiya and thank you for your message. My daughter has kind of learnt to live with it. She suffers greatly with pain in her joints and takes painkillers when needed and sleeps.

I nag her regularly to get it looked into, I think at the moment she’s too busy leading her uni life. But she’s due back in the summer so I will be proactive in getting her to look into investigations. I hope you’re doing okay and not suffering too much :(

It’s really hard, wanting to do things and mentally feeling prepared but not having the energy due to lack of sleep, fatigue and pain.

Stay strong and I hope all goes well with you and your child. X

Hello, i thought i drop a line. I have SLE and both my daughters have auto immune conditions. Oldest has ulcerative colitis and suspected lupus and the youngest has UCTD/Lupus. My mother's family has many examples of auto immune diseases and growing up everyone complaint about similar problems therefore we all assumed it was part of life :). Very funny that we assured each other it is growing pains or some cold, being on a strict diet that we all had health problems :) So you never know but if you make sure your child's vitamin D levels are Ok, sleeps well and eats well, natural food with lots of fruit vegetables, fish, yogurt, kefir(only writing what we use and by no means I suggest you should eat the same) etc i think you can prevent any flare if they have lupus or be prepared to take any illness if they come across. I believe lupus is unhealthy gut. So i would focus on gut health early on so that it does not cause any health issues in the future. With best, Lale

bhuebhek profile image
bhuebhek in reply to LalSD

Thank Lale for sharing ❤️I’m glad there’re many strong women & mothers here I can look up to. I’m still learning to be a mother and afterall these years I’m still once in a while in denial for accepting my condition.

Have your children ever suffered socially because they couldn’t do certain activities like their friends?

LalSD profile image
LalSD in reply to bhuebhek

Yes, I think the most difficult part for them to learn to say ‘no’ and how to say it to protect their friendships. Most of them wanted to go out and clubbing and they could not because they were very sick at times but because lupus patients look great it becomes almost impossible for other to understand how complicated it is. But I explained that if hey are honest with their friends and explain what holds them back, they could have better communication. And it worked with majority of their friends. Some were mean and critique them for being unreliable but they knew that they were not being difficult, they were just unwell. Also they had to learn how to manage their energy and reserve some for end of the day. So they would limit their expose with the outside activities. They learned that by doing one simple activity a day and resting after and waiting to do more the next day or weekend. They are now 27 and 25 and a half with full time jobs. They have a very strict routine but they squeeze coffee meet ups, walks in the parks, online coffee catch ups etc.. and they go camping a lot. Light activities. Hope this helps. x

Hi bhuenhek,I have SLE and I'm the only person in my - know all million of you're distant rural cousins ) to have anything auto - immune. I've been to many face to face lupus support groups over the years and it's very much ditto with them. Many concerned about their children and relatives getting it- but they were all healthy. Auto - immune illness family clusters - while they do happen- are rare.

The idea that something in the environment combines with a genetic propensity to cause lupus - is a research theory - that's been around since I was 15. Now 53. Still nothing yet proven.

It's an illness with a lot of gaps in knowledge- that can cause a lot of theories that can lead to worry.

My advice would be - not to worry. Perhaps keep an eye out for when she's older - as oestrogen in teenage years - and pregnancy can play a role but for now -

She's two years old - infant onset lupus is really really really rare. Her changes of ever developing lupus is next to zero.

Don't worry.

Just enjoy her.

bhuebhek profile image
bhuebhek in reply to Freckle1000

Thanks for your insight! I’m still learning being a mother and even being scientist myself after all these years I’m still learning to accept my own condition. I think I suffer more psychologically than physically.

Freckle1000 profile image
Freckle1000 in reply to bhuebhek

It's such a difficult illness to deal with - with a lot of uncertainties at the best of times. You're definately not alone with the unpredicatabiliity of it all causing psychological problems and it's only natural that you want answers. I wish we had better understood - better researched- black and white illness.

I come more from a history/ sociology type education - and over time its helped me psychologically to ' try' ( not easy - I know - I've been there ) to concentrate only on what's been pretty much close to 100% proven and wait for other theories and studies to settle over time before investing too much in them. There are trends mixed with scientific investigation out there and at the moment - the two are very intertwined right now. Very hard to navigate.

x

Thank you everyone for sharing your thoughts and experience ❤️Somehow I got more mixed feelings now 😅 kidding

Yeah the aim is to get her childhood as normal as possible. After being in waiting list for long time she was finally offered a spot at a daycare last year summer after her 1st B’day. I cried on the phone when I had to turn it down/postpone it because of corona. I’ve been mostly alone with her at home because her father live in other town. She’s super active and I love her so much. But the more she grows the more she’s killing me. I have limited energy to take care of myself and taking care of her is.. 😵

I’ve been sleeping max 3-4hours daily. When she’s in good mood, everything is manageable. But she’s been having bad teething for >1year now. Like it’s seriously so bad she refused to eat & couldn’t sleep & lost weight from it, even after painkillers her pediatrician prescribed her. The dr only said that it’s unfortunately normal and passed down from the parents -> Me 😩 😭

So believe me I’m dying to put her in the daycare or just to get help so I could sleep normal once in a while. I’ve also put my PhD thesis on ice since the pandemic. I’d love to go back to it just to finish it.

I’m not trying to be helicopter mom by protecting her from every infection. In fact she has parasites/worms right now from licking shoes and eating grass in the park 😅🤦🏻‍♀️

But I just thought that covid infection is not just any infection. And even now more cases with long-covid also appear in children. Also I’m not sure if I’m emotionally strong enough to take care sick kid. It breaks my heart already to see her suffering so much from her stupid teething 😭

So for now, taking mixed of advices I got, I think I would keep her home until she’s vaccinated. We live in Germany, compared to UK vaccination is so slow 🐌 Probably it’d take another year until vaccination is available for toddlers. A 6-months old baby just recently got a trial vaccination in the states 🤞🏻🤞🏻

My daughter is almost 2 years old, I’d have severe anxiety sending her to daycare for now during the pandemic where the kids are basically exchanging saliva as daily routine 😂 She wouldn’t miss much I guess. I think I only spent a year in kindergarten. Next year she’ll be 3 and hopefully vaccinated and will start having tons of friends 🥰

Sending all of you lots of love from Germany ❤️

I am at a place finally after two years of treatment for anxiety where I no longer spoil today with worries about tomorrow. After finally arriving to this place my health is also much better to boot. Please speak to your doctors about your anxiety. It is treatable and I found the treatment to be life changing.

Our worries about the future and the endless search for answers is our minds’ false way to grasp some sense of control over the fear of the unknown but the answers are not possible and obsessing over needing to have the answers creates more harm than benefits. Your young child will innately sense your anxiety and it will create a similar pattern within her.

Breaking my cycle of anxiety has allowed me to help my young daughter to avoid having the same anxiety disorder as I. Chronic anxiety is believed by many to actually be the precursor to autoimmune diseases, cardiovascular diseases and cancers. There is a direct link to childhood trauma and anxiety seen in lupus patients.

My mom constantly worried about me getting hurt and this fear of death was traumatically passed on to me. I believe with all my heart this health anxiety caused my disease and consequently my strokes in my 40s. Chronic anxiety is proven to change the immune system’s regulating abilities.

Your best chance to help your daughter avoid lupus is to help her learn how to healthily handle life’s stressors by setting an example with treating and getting a handle on your own anxiety issues.

Best of luck and please try to learn how to enjoy this wonderful stage of life it goes by so quickly and if we worry too much about tomorrow we do miss today.

Pumpkin2009 profile image
Pumpkin2009 in reply to Roarah

Hi Roarah, I just wrote to you with some questions about blood work and read what you sent to bhuebhek. Once again, I am so impressed with your advice and how well you express it. I also believe and have read that there is a link from chronic anxiety and autoimmune disease. I agree a child who grows up in an environment that triggers constant anxiety often is at risk. The child doesn't know or understand, but learns to cope the best he or she can, but years of that takes its toll. My mom has narcissistic and borderline personality disorder. There is quite a story of how she finally was diagnosed, but too long and painful to go into. My brother and I had no idea what was normal or not and thought everything was our fault. We did not learn until a few years ago even close to what we had been living with in our late adulthood. We have few childhood memories, but many internal scars.

I especially applaud your last statement.

Healing hugs.

Wendy39 profile image
Wendy39 in reply to Roarah

Hello Roarah

I'm just getting around to catching up with this post, which I will reply to below, but your response has made me curious.

This link with childhood trauma and anxiety, can you post me some links to the research?

It's really got me thinking about my own childhood, which was difficult at times and me and my sister's health issues. I obviously realise that there was a mental health connection to our childhood with my sister in particular but hasn't made the connection with our physical health issues.

I also have a son who suffers from anxiety, he's always been a worrier and my daughter has started getting attacks out of the blue, at school......

Thanks in advance.

Wendy

Hello bhuebhek

I followed your post a few days ago and am only just getting around to responding.

I have written a similar post before, about my own 3 children and my concerns about their health.

I was 39 when diagnosed with lupus and I have 3 children. They were then 9, 8 and 5 years old.

I consider myself extremely fortunate to have my 3 children. I had them before my lupus really became an issue and I had normal pregnancies and normal, healthy babies. I later tested anti-RO positive and this can be linked to a congenital heart issue in newborn babies - so even more lucky that this was not an issue for my babies. Plus, many people with lupus, or Hughes Syndrome / Sticky Blood, etc cannot have children and so mine really are a blessing.

When I saw the first rheumatologist at my diagnosis, he asked if I had any questions and my first one was, "What about my 3 children? Will they get lupus as well?"

I had never heard of lupus until this time and was still trying to get to grips with what it would mean for me, most of the online information was very scary, but the thought of me having passed it on to my 3 was terrifying me.

He responded that medicine was moving forward all the time, he could not tell me what the future would hold for my 3 children however, medicine moves fast and there would be new medicines and different approaches by the time they possibly developed it.

As time has gone on, I have worried less. I try to take each day as it comes. Apart from anything, my knowledge of lupus, the blood tests, the symptoms, the diagnosis etc has grown hugely, so I would be much more on the ball with them.

My guilt now, is much more that they might remember me always being ill. I try really hard to rest when they are at school and make sure I'm up when they get home. I would hate them to look back and remember me always being ill in bed.

They are now 17, nearly 16 and 13.

They have carried on going to school whenever they can and I haven't worried about them catching covid too much. 2 of them now test at home twice a week. Two of them had cases in their classes last year and had to quarantine at home, but we've all been lucky and avoided it so far. They needed to get back to school, for a normal routine. I think I am more worried about the mental health impact for them right now, than any worries about their physical health.

They have all worried me at times, about their physical health. One complained of growing pains a lot. This can be a relevant issue in lupus patient history and I myself had growing pains. But it doesn't mean he will get lupus. He also gets bad hay fever like I used to as a child.

My middle child has developed a bad reaction to the sun. It started a couple of years ago. He got this rash on his arms that looked exactly like my rash. He has to wear high factor sun cream and be careful. But it's not necessarily the photo sensitivity that lupus patients can get, it could be a one off or it may be urticaria. Only time will tell.

My youngest has recently shown symptoms of lactose intolerance and when she got her bloods tested she was anaemic too.

So all 3 have had issues, where I have thought oh my goodness, are they developing lupus? Have I passed on my faulty genes onto them, that will mean they suffer poor health?

But ultimately I wouldn't be without them for the world.

My Grandmother had RA and my Dad's side of the family had a strong history of asthma and atopic illnesses. The genes from each side resulting in me developing lupus. But I'm here and none of us would change any of that.

I guess what I am saying is, we all inherit a mix of genes from our parents and their sides of the family. None of us would chose this, but it is what it is. My Mum probably feels awful that I have lupus and she's played a part in it but we can't all beat ourselves up about it all the time. We must accept it.

I have a good friend who's Mum died of breast cancer and she lost 2 other aunties that died of it. She's very high risk and under goes routine monitoring to reduce her risk. So it's not just the lupus genes us parents have to consider.......

Try to relax about your daughter. She's 2 years old and she has a whole of lot of fun ahead.

I know that it's annoying when people say don't worry about it, as we are Mums and to an extent worrying is part of the job. Show me a mother that doesn't feel guilty about something at the end of the day, when their child is safely tucked up in bed. We ask ourselves, did I cuddle them enough, did I tell them I loved them before they went to sleep, was I too strict about that? Are they happy? etc etc etc. But really, try to not let this health anxiety for your daughter overtake all of your thoughts. I think Roarah is right, if you feel that your worries are taking over and stopping you enjoying the here and now with your daughter, it may be time to reach out for help.

I think you must be exhausted doing most of this alone and having lupus yourself. So make sure you take every opportunity to rest that you can, even if it means putting her to bed and then you going to bed yourself. And don't be hard on yourself. You are doing a great job. Take each day as it comes.

I hope I haven't rambled too much and that this makes sense. I do understand your worries. And I think we've all been there, worrying about what the future holds and will our kids get lupus. But you are certainly not alone. I'm glad you found this support group.

Best wishes

Wendy

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