My 14 year old presents with 4 Lupus symptoms but... - LUPUS UK

LUPUS UK

30,215 members26,791 posts

My 14 year old presents with 4 Lupus symptoms but because her blood tests aren't showing antibodies the consultant said it can't be Lupus...

annemarouge profile image
21 Replies

However despite seen the consultant paediatric rheumatologist last friday after her ultrasounds which shown no joints inflamation, we are still worried it might be. She started feeling unwell on the 9th of Feb, one week of extreme fatigue, then joint pains, a malar rash (which lasted 6 days). Since then she has been off school for over 3 weeks, was put on a large dose of slow release Ibuprofen (the fist consultant thought she could have arthritis) and has been feeling very poorly. Last Friday we felt quite elated after been told by the top consultant that our daughter 's symptoms were probably caused by a virus and that with some small set of exercise (4 times a day) and some exercise in a pool to get her joints mobile again we thought she would start getting better. We stopped given her the 1.6mg of Brufen on Friday night but she had a very bad weekend, feeling in lots of pain an feeling completely exhausted (we abandonned the idea of going to the pool as she said she felt to weak). She sais she felt sweaty at night and woke in the morning crying because of her joint pain. The plan was also to try to get her to school one hour a day but again this hasn't been possible. The physiotherapist we saw after the consultant said she treated between 5 and 10 patients a day with similar condition, and that they always got them better...That comforted us but now we are again feeling very worried. She has had her malar rash 3 times now, the 2 last times we treated it with an hydrocortizone cream which helped and reduce the rash. In desperation I have made an appointment with an experienced homeopath and we will be seeing her on Wednesday (it is worth trying an alternative form of treatment, particularly one that won't have an adverse effect on her health). Has anybody been in a similar situation ? as parents we are feeling helpless and very worried so any help would be helpful.

21 Replies
Slowmo profile image
Slowmo

Hiya, as a parent I can understand how worried you are. I've no experience of childhood lupus but do know from being on this site that many people take a long time to get diagnosed, (sometimes years) and often have negative tests before showing up as positive.

In my opinion if it looks like lupus, behave like lupus it usually is lupus. So, if I were you i should keep on trying with the professionals, don't give up. Ask for your daughter to be re-tested, it could just be about timing, and you never know it may show as positive next time.

Obviously I'm not wishing your daughter has lupus but you do need an answer to whatever is causing these symptoms..

All the best and keep us informed.

annemarouge profile image
annemarouge

Thank you for your reply. What puzzle me is how confident her consultant who specialise in this field and particularly peadiatric rheumatology was in saying it is not Lupus. Of course I want to believe him as I am terrified it vould be Lupus. I have read as much as I can on the diagnosis process and most site specified that ana positive in pretty much always present in Lupus sufferer.

I will wait till we are back at the hospital seeing the physio and speak to them about re-testing. If she was to have Lupus she would be having a flare-up, wouldn't the antibodies always be present ?

Jo883 profile image
Jo883

Hi annemarouge

I'm sorry to hear about what yr daughter is going through. I can't say I'm an expert, there are far more qualified on here. I would follow yr heart. It can take a long while to diagnose lupus - try to keep a diary of yr daughters symptoms and any photos of malar rashes for your consultant - I have been ill since I was 19 (that was quite a long time ago!) many different problems over the years and remissions, also, a fair bit of fobbing off, I am somewhat closer as I have many symptoms of lupus but not had a positive blood test as yet, there are others on here that have also had the same for many years. I'm on all the meds, I have only been being tested for lupus after having had 2 very hard years but still come under the 'not quite' diagnosis of sero negative connective tissue disease 'lupus like'

It's a bit of a process and sometimes a slow one - there's always a second opinion you can seek, but never give up. Best wishes x

annemarouge profile image
annemarouge in reply to Jo883

Sorry it has taken a while but thank you for your reply and best wishes

ebril profile image
ebril

I think you have to have at least 11 of the markers and a positive ana dsna to be diagnosed with lupus I could be wrong but it took years for me to be diagnosed I was told by my gp it was all in my head only by chance I was sent to a rheumatologist because of my knees that I was diagnosed with lupus which was good as I had been having g symptoms since for years i'm now 50 and was diagnosed 3 years ago keep a diary and keep on to your gp because most of the time they know nothing about Lupus mine didn't

annemarouge profile image
annemarouge in reply to ebril

Thank you for your reply

Hi annemarouge,

Sorry to hear that your daughter has been unwell.

The problem with the lupus classification criteria is that they were developed to differentiate Lupus from other auto immune diseases, not as a diagnostic list. There is also a lot of debate around sero negative lupus and if it even exists.

Has the consultant Rheumatologist ruled out other auto immune diseases such as vasculitis which can present with similar symptoms.

I don't know what part of the country you are from. It might be beneficial to seek a second opinion from somewhere like Great Ormand Street in London as if it is some form of auto immune disease these are rare in children and the large specialist hospitals have the most experience.

As other people have suggested photograph all rashes and keep a symptom diary.

As a parent I can relate to how you are feeling. I truly hope you manage to get some answers soon.

Best wishes

Keyes

annemarouge profile image
annemarouge in reply to

We have pushed to see her rheumatologist again and her GP has organised a dermatologist for a possible skin biopsy as she has had 6 different rashes now so hopefully we will know soon and praying it is viral and not a life long condition

kazp profile image
kazp

I was 9 when I was diagnosed back then, now some 30 years ago i had 9 months of tests. Thankfully tests are far superior now. I cant say either way if your child has or doesn't have lupus as it affects every one of us differently. Lupus is very clever and disguises itself. It could just be that your child has an auto immune, connective tissue disease of which there are many.

What I can say with confidence is both of you are not alone. Your family will get through this and be better for it. You will all be stronger.

annemarouge profile image
annemarouge in reply to kazp

Thank you

flossy1 profile image
flossy1

Hi, I can't add any further information, but my heart went out to you and your daughter. Please let us all know the outcome. There are lots of very experienced people on the site who will always be willing to answers your questions.

Hi, going through a milder case of what your daughter is exhibiting with my 12 year old daughter. We think it's the aftermath of slapped cheek. Over the last month she keeps relapsing - her cheeks flare, tired, muscle and joint aches, malaise and itching but no spots. Saw G.P again today and she's organised blood tests. I must admit the worry of her having SLE is always at the back of my mind although a year ago a paediatrcian said she didn't and diagnosed stomach and head migraine. They ve taken no notice of the constant mouth ulcers - bless her. A lot of school has been missed due to viral type symptoms and I really don't know what to do either. They're trying to get a diagnosis through bloods but I'm an SLE sufferer whose blood work is normal. Keep us informed won't you. All the best

annemarouge profile image
annemarouge in reply to

Hello,

Sorry to her about your daughter health, it is so hard to see our children been poorly. I hope you will soon get some answers. A friend whose daughter had ME a few years ago said her daughter had very similar symptoms to my daughter (and yours too) and I will speak to my GP (will also investigate a possible thyroid problem just in case) I went to see a friend who has been a Lupus sufferer for over 20 years ago, she showed me the paperwork she has about Lupus which stated that antibodies are always present in Lupus sufferers, you said your blood test are normal, how was your diagnostic done?

Best wishes

in reply to annemarouge

The American College of Rheumatology ACR have a 11 point criteria to help diagnose lupus used along with your medical history. Initially they thought I had MS but after tests said it was atypical so looked at lupus - again unsure especially as the neurologist declared that he felt I neither had MS or Lupus and that I should just consider depression. Fortunately my GP and rheumy believed in me and sent me to St Thomas' lupus unit - waited 8 months but within 45 mins of being assessed all based on my history as physical was 'normal', I got my diagnosis.

We are all unique in our symptoms and St Thomas consultant has said they don't know enough about lupus and that they haven't found the ultimate lupus test yet - all trial and error which is why literature talks about symptoms showing what percentage of lupus sufferers have it. It was having clinical evidence I.e swollen optic nerves and brain lesions, that made them pay attention.

2nd opinions can be sort or go privately. :-)

annemarouge profile image
annemarouge in reply to

Thank you for giving me more details, so I guess I am clinging onto "the no ana blood test" as proof that she hasn't got it when she could still have it. I ll try to get her seen at St Thomas.

Best wishes

misty14 profile image
misty14

Hi Annemarouge

I'm so sorry your daughter is so poorly , a terrible worry for you! Is the Rheumatogist seeing her again? It's always worth trying to see them sooner if she stays unwell either via a cancellation or your physio might re-refer her. They're going to be very reluctant to diagnose Lupus in a 14 year old unless it's clear cut. It can take years for a diagnosis sadly but sometimes that's better than the wrong one!. Keep fighting for her and you'll get there. Good Luck X

annemarouge profile image
annemarouge in reply to misty14

Thank you

Sween53 profile image
Sween53

I have just been diagnosed after 3 years hundreds of blood test and kidney biopsy the anti bodies are not showing up in my blood tests now on medicatoin so not everybody's blood test show anything

a_Scot profile image
a_Scot

Just to mention that scientific studies show homoeopathy does not work for any medical condition, see ... rationalwiki.org/wiki/Evide... homoeopathic "remedies" are just water ... quackwatch.com/01QuackeryRe...

Clare9811 profile image
Clare9811

This is something that happens all to often with people on the road to diagnosis-you need to stand your ground and get second opinion. My ANA blood test for Lupus didn't show until after 5 years of receiving a diagnosis, that's why careful consideration of other symptoms needs to be looked at.

I really hope you manage to get something sorted soon, it sounds like your daughter is having a really bad time of it and the last thing you need is to be fighting with consultants/doctors for a diagnosis xxx

Hi am so sorry your daughter is so unwell and until the specialist sees her you could try getting your daughter to have boiled mineral water (no tap water) with a teaspoon of Manuka honey the highest number you can find. Mix with fresh ginger and fresh Lemon. Cook only fresh food and try cutting out sugar, sweets, no pop, crispy, cookies etc. It may help her feel well. My son was very ill and I took him to several drs over several years and we wasn’t believed but he is now been diagnosed with fibromyalgia and are now looking at auto immune diseases such as lupus. I spent years and thousands of pounds on alternative treatments and what I found what worked the best was cutting out sugar, yeast, additives, dairy, gluten etc. Try organic chicken mixed with veg. I was told by an alternative therapist that certain foods were making me and him very ill. He explained that that foods that cause inflammation cause auto immune diseases to flare up and by cutting it out and reducing these foods bring the symptoms down. Both of us are now very sensitive to everything. Keep a food and symptoms diary and you will get some answers to what triggers the symptoms. I too have several illnesses too which is linked to foods. I know it’s a terrible worry. You must put on the sunblock before exposure to daylight even on a cloudy day and re apply several times. My son is only 18 and can’t bear the sunlight. If it’s lupus or another auto immune disease you will eventually get an answer and a homeopath can help. Try seeing a herbalist too and ask the drs can you have a Referal to a immunologist. Through trial and error you will get to know what is wrong and what helps. Research lupus and show the specialist the food and symptom diary. I would suggest getting all your daughters medical records to read through for clues as your drs don’t always tell us everything and I hope you get the answers you need. Keep us all updated and I hope your daughter is feeling much better soon.

You may also like...