My daughter has just been diagnosed with a multi connective tissue disease most probably SLE. She has been started on hydroxychloroquine and NSAIDs. She is struggling with this overwhelming diagnosis and the lack of child-friendly information, as most of it is aimed at teenagers. She is a bright and active girl and we as a family want to find the right balance so she fulfils her potential and yet we don’t push too hard and make her symptoms worse.
Does anyone have any advice re: where to find age appropriate information, how to assist schooling or generally how to help her and I manage her condition?
Many thanks
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Singing_fairy
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Hello singing fairy & welcome. This is a lovely forum, I’ve been here 10 years and found both LUK & our patient community always supportive + ready to step up with sound advice. There are many here on their diagnostic journey discovering the character of their version of lupus or a lupus-like condition. You probably know this process often involves ‘watchful waiting’ while you & your medics take note of how you respond to treatments...sometimes trying several before discovering the best for you.
Lupus UK offers a young person’s guide to SLE on the LUK website, here are links to the pdf + to home:
My lupus was diagnosed in 1954 when I was a toddler & tests + treatments were very basic...& self help techniques + complementary therapies crucial to quality of life. my lupus must’ve been relatively mild. I was lucky that my mother was very keen on healthy living: diet, meditation, excercise etc
Like your daughter, I grew up an active, eager girl...the diff being that my parents & doctors never told me my iffy health was due to a disease...I just thought I was a bit more vulnerable than other youngsters, but being different in this way for no obvious reason was hard for me emotionally. 🤷🏼♀️ However, I’ve had a full and satisfying life so far despite such early onset illness, and I’m now convincingly fully diagnosed + adequately medicated so feel mostly great despite it all
My dear mother finally revealed all this a few years ago. Our feeling is that I might’ve managed better emotionally had my diagnosis been out in the open with more professional support, but either way the repercussions of such early onset lupus are hard to ‘process’. And Lupus UK is great help! So I’m glad you’re actively supporting your daughter & am glad you’re here...+ am wishing you, your daughter & all the family every best wish
It is reassuring to know there are people that understand. We are very blest to have a wonderful paediatrician who is never too busy to speak to me and see my daughter.
My daughter has had 3 distinct flares and each time she is taken into hospital for sepsis. However, they have never found the source of infection. After I did some research into her symptoms and found lupus to be like reading my daughters personal history we started pulling things together. I was lucky not to have to fight the consultant, although the registrars all thought I was crazy! And she came to the same conclusion of a diagnosis of lupus also and ordered the necessary blood work.
It’s wonderful to know that you have had a full life, her happiness is my priority. I’m just concerned as she will only have had 16 weeks of formal education this school year between being ill and Covid-19.
We have also started some essential oil treatments that will hopefully help, so thank you for suggesting that. Im not reliant on blood tests or doctors to use those and I’m not a patient Momma when my children are suffering.
I’ll start looking at that information also - I try to explain everything in a way she can understand and in small chunks but I’m feeling overwhelmed so I can imagine how she is feeling.
👋👋👋👋👍🤩 wish my mother had you’re sorta attitude! I love everything you’re saying. The overwhelmed feeling is one we all feel...it can & does gradually segue into confidence...and then some new challenge crops up...but navigating every challenge can help us to access more strength even when we feel too wiped out by all this...every challenge also can help us to extra savvy re collaborating even more effectively with medics so we get the quality of care that’s really needed. Seems to me, you’ve already proven you’ve got what this takes! ❤️🍀❤️🍀
PS is your lead clinic rheumatology? Or immunology? Have they run immunologic blood panels on your daughter? Ie checked her immunoglobulin G, A & M levels? Am wondering because of all that complex recurring sepsis. (Sepsis is one of my characteristics too...this predisposition began in childhood, way before I was put on immunosuppression meds for lupus. my leads are rheumatology + immunology + gastroenterology. And my below range immunoglobulins are more responsible for my chronic infection issues more than my lupus is)
Her lead clinic is rheumatology, at the tertiary children’s hospital and our local paed dr has an interest in rheumatology.
They ran her IgG & M as the rheumatology specialists thought she had suffered with mycoplasma but when they repeated them they were still high and so they are now agreeing it is an evolving mixed connective tissue disorder most likely SLE and have sent us all the children info - but it’s all teenager based.
When she has had her flares it always confuses them as her ESR raises a bit but her CRP goes very high. Hence why they’ve always gone sepsis.
I've posted this reply to another mum on here but think it might be of help to you. I understand that her diagnosis is only probable at this stage but MCTD has a lot of the same symptoms so hopefully this advice will apply to either diagnosis.
Those patients are unlikely to be on this forum though because of their age. These forums can be a blessing but often they only show the patients that are struggling most, so can be quite daunting. The majority of people with lupus live very full and active lives.
Lupus UK has lots of amazing information for you to access, and read with your daughter. They also have a young person's facebook group (which is fully private) & meetings that she can join once she's old enough to use facebook. There are other organisations that cater for young people with arthritis, but who will often allow youngsters with lupus to join as well. They organise weekends away and sessions about different topics. This can give her a community and place to discuss any worries in a safe way.
The other tip I have is to slowly give her control of her condition from a young age. It will hopefully let her develop confidence in managing it herself and minimise any issues as she grows up.
If you have a specialist nurse then they should be able to help with guiding this, but if not then ask her consultant. It could be as simple as her collecting her prescription (although you will need to sign for it), or telling you when she needs to take them. As she grows up I would recommend getting print outs of his blood tests so she can track and understand them herself. I did this aged 19 and it was invaluable. Lupus UK has a style symptom diary she can use to track her own symptoms between appointments if this is of use to you.
There is an app aimed at young people called the "PainApp". It was developed by Birmingham hospital for children with chronic pain and teaches skills such as pain management and pacing. It also let's the user keep a diary of how they are feeling and how much they have done today in terms of school, playing with friends etc. Its a really good tool.
I was diagnosed at 19 so used some of these resources personally until I was 25, but I met lots of people who had been diagnosed much younger. It's called junevile SLE when its diagnosed as her age.
That’s all really helpful information. Thank you. I’ll take a look at the app and symptoms diary. She seems to have a new one every few days at the moment - but she is flaring I think, as her Malar rash is present as well as a rash on her arms, chest pain and painful knees and feet.
🤩 GREAT REPLY! DEEPLY thoughtful & helpful! 🤷🏼♀️Wish this wonderful support had been there for Lupus diagnosed youngsters like me back in the 20th century...this reflects real progress HURRAH 🍀❤️🍀
Depending where you live in the UK a referral to a children’s hospital may be a good way forward. Alder Hey, Great Ormond, Manchester, Bristol, Birmingham, etc are all fantastic
Hi Singing Fairy, my son has just been diagnosed with SLE in November and is 12 years old. It does feel like an overwhelming diagnosis and we’re still finding our way but like you I’m keen to use diet, food supplements and a healthy lifestyle to keep him as well as we can. x
As terrible as it is, it is comforting to know she won’t be facing this alone and there are other young people who will know how she feels. Hope you’re son and you are feeling empowered and finding a path which is beginning to work. X
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