LUPUS UK
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Help! My little girl is ill again.

My 8 year old daughter was poorly a few months ago.

She couldn't walk because of severe pain in her hips. She suffered with terrible fatigue too.

She was admitted to hospital for two weeks and had lots of tests. She had an mri. That was clear. She had loads of blood taken. Some came back indicating swelling.

She was discharged without a diagnosis.

Life was very difficult with me being so poorly too.

At one point I was told that she was just copying me. I don't believe this. I know my own child.

Now, she is starting with the same problem again. She has gone from a happy athletic little girl to a pale, sore shadow of her former self.

I'm worried sick. I don't even want to take her back to the doctor. I feel let down by the medical profession.

She has already lost a whole term at school and I don't want that to happen again.

Has anyone else had similar problems?

So many doctors have told me that children can't get lupus. I know this isn't true.

My son has rheumatoid arthritis and was diagnosed when he was 15. Along with my lupus, surely it's possible that she has a similar issue?

Her sister, who is 13,has had hip and back problems since she was 7. I feel like the consultants don't listen to me. I feel invisible and struggle to find the energy to fight.

Thanks for reading, Louise xx

8 Replies
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Well not sure how much help this is but when I was diagnosed at 45 my consultant said my considerable bouts of illness from age 9 to 19 were almost certainly lupus related. This included constant sore throats, kidney Infections, fatigue, severe unexplained rashes, boils and stomach problems to name a few. I remember at least three stays in Hospital but a failure for anyone to say what was wrong! I did seem to go into remission in my early 20's and was mostly ok until menopause started. Can you discuss your concerns with your own consultant or lupus nurse. It seems a shame that your worries are being dismissed. It seems plain idiotic to deny the fact that lupus affects young children. I hope your daughter feels a bit better soon xxx

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Thanks for your reply. I have taken her with me when I saw my own consultant.

He told me that she was sicker than I was!

Shame he doesn't do pediatrics.

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Perhaps you could persuade her/him to give you the name of a paediatric consultant. You could then ask you gp to refer your daughter? Xxx

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Good idea, he will know children's specialists in your area. Children DO get Lupus. Wishing your daughter good luck.

.

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One of my children has systemic lupus, passed a test at 5 which was ignored, she also had Hughes Syndrome, and is no aged 16, my son aged 14 has Hughes Syndrome. You have come up against a typical medical response which is when something is not clear to them they somatise ailments, this is not untypical, but unfortunately not uncommon, where are you located as I may have an idea for you.

1. emedicine.medscape.com/arti...

2. ard.bmj.com/content/68/3/412

Mary F x

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Thanks for your reply.

We live in Telford, Shropshire. X

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I will send you a private message. Mary F x

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I hope you have got help for your daughter. I found this video which you might like to show to sceptical medics!

nhs.uk/Video/Pages/lupus-in...

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