Any experience of a child with lupus?

[summertimeandtheweatheris]

I am looking for any experiences of a child diagnosed with lupus. My 5 year old is constantly poorly - literally antibiotics once a month, he has had various tests under various consultants but it has always focused on what he has had at the time if that makes sense.
Anyway this summer was our first sunny holiday, abroad & he got a rash on his face, googling this when away kept bringing up lupus. But since back & reading more so much of it fits, his symptoms are joint pain, fatigue, infections all the time, low but D (being treated), low iron (being treated), hates & reacts to going out in the sun.
He has a consultant appointment in Jan & I have booked Gp appointment to discuss my thoughts as well as thoughts on ENT referral as always throat or chest infection - this summer holiday alone he has had two antibiotics already. GP is 3 weeks away as you can get one on the day for emergency or on advance it is 3 weeks.
So sorry for long post just looking for anyone with a child with lupus or can relate to the above. He has had numerous admissions.

I can't really help you with a child, but my husband is currently undergoing various tests and it appears the doctors are pursing a diagnosis of systemic lupus. My husband's main symptom was a terribly sore skin rash - 'rash' doesn't really do it justice - that flared up with the slightest exposure to the sun. It was on his face, shoulders, top of back and arms, extremely unsightly and left significant areas of scarring. It was over six years ago he first approached the GP about it, he was eventually referred to a dermatologist who spent ages looking for allergies and treating him for eczema, to no avail. Eventually he saw a third dermatologist who instantly recognised it as discoid lupus erythematosus (which I believe exclusively affects the skin). The dermatologist took a biopsy which came back inconclusive (not sure why). He has had several blood tests - ANA (testing for antinuclear antibodies, which can attack the body's own tissues), ENA and anti-Ro (further similar tests ) - all positive. As well as immediately taking the skin biopsy and blood tests, the dermatologist referred him to a rheumatologist (who he has seen and believes he has systemic lupus - few other symptoms have developed yet, although she anticipates they will!)

Sorry for the life history! I think what I am saying is, I have obviously read quite a bit about lupus and I agree your son's symptoms sound concerning (lupus or not, they are extremely concerning) and I'm just warning you that my husband's diagnosis almost came by chance - he saw two dermatologists who clearly didn't have a clue what was wrong with him, putting it down to eczema. Also, your son will need to see a rheumatologist if he hasn't already. The symptoms and course of this horrible condition vary so much between each person and I'm not surprised to hear you've struggled to get anyone to see his symptoms collectively. Arm yourself with as much information as you can for your GP appointment - it sounds like you're going to have to be quite assertive. I really feel for you - I worry about my husband's condition being hereditary and passed on to my own children - but to have your little boy suffering so much and struggling for answers is truly awful.... All the very best of luck!

Thank you for taking the time to post & for sharing everything you & your OH have gone through. Your post gives me lots to think about. Lots of things I have read seem to fit lupus, with the ongoing illness, sore joints, fatigue etc but then of course it could be other things that I have not even thought of. We do have a very good GP, so hopefully he won't think I am mad. We may end up going to the GP sooner as he only finished antibiotics Friday & his temp is already back up to 37.8 & he is feeling ill again

It's good to hear you have a supportive GP. I really wish you well - please let me know how you get on.

Quick update - our eldest had a consultant appointment today (routine, 6 monthly) with the same consultant our youngest has seen before & due to see in Jan so we gate crashed it with our concerns, did not take youngest & did not mention lupus, but talked about our concerns: which are no appointment until Jan: constantly ill, joint pain etc she was great, we know her from our eldest (different complaints) and she is referring us to a specialist children's hospital for tests & will make a plan once results are in & discuss them in our Jan appointment.

Has your GP run blood tests to look at his ANA and anti-DNA markers? I would have though this would be done as part of the referral to the consultant and they should give you a good idea. If the ANA is positive, you also need to know the pattern to see which disease it is likely to be associated with (speckled and something else from memory is lupus). Remember that lupus is called the great mimicer as it has symptoms that are similar to so many other illnesses and in my experience, doctors like the blood tests to be positive - whilst you can get a diagnoses without, you might have a battle on your hands.

I have to read and run now as have to be up at 3am but will pop back tomorrow. Dd (6) was referred to rheumatologist for suspected jia, but now they are leaning towards lupus. Be back tomorrow

Thanks for your replies...
He did have lots of bloods during his last admission so I will go & find the results, from memory- inflammation was up & something like creatin, but will check.

Runwayqueen if you have a chance to reply it would be appreciated :)

I have lupus and my dd has bern showing symptons that are similar.
She actually had a strep infection that entered her bloodstream.

I wasn't diagnosed as a child but all the signs were there and it was only in my 20s that I saw a rheumatologist who ran tests. I would advise to see what the rheumatologist or immunologist you see says but be prepared to ask for a second opinion or for tests to be done. SLE can be tricky to diagnose and some specialists seem reluctant to do so. My symptoms did get progressively worse, but they started around the age of two and in hindsight were clearly there.

my 2 year old has an immune deficiency. constantly ill and needing antibiotics even though he is on a prophylactic! I would push for immunology tests and for them to check lymphocytes. good luck