Need some advice regarding my 11yr old daughter.

[PurpleButterfly81]

Hi this my be a bit long winded but here goes.

My 11yr old daughter was diagnosed with rheumatoid arthritis when she was 3. Since then see has had many flare ups and problems due to swelling.

Recently over the past 2yrs she has come out in a rash that sits under the skin. Mostly showing on her inner thighs and upper arms. She also has constant red cheeks. She is currently under the care of great ormond street hospital, but they are really struggling to diagnose her.

We have to date be given various diagnoses, these are rheumatoid arthritis, chronic regional pain syndrome and joint hypermobilty disorder.

After visiting our GP a couple of weeks ago she mentioned that it could be boarderline lupus.

I have attended some photos of her rash.

I'm just looking for advice really. She is still under investigation but I feel so frustrated that we have no answers yet. We are currently putting together a case to take to the "higher ups" at great ormond street hospital as we can't see our daughter suffer any longer.

Thanks

[F1zz]

This must be heart breaking, can you request an appointment with a lupus specialist?

[PurpleButterfly81 in reply to F1zz]

Thank you, my husband is with her at great ormond street hospital this week due to physiotherapy so I will get him to ask.

[diane46]

Hi I have had this rash for a long time for many years I was given Strong antihistamines and steroids until I found out it was lupus now I am on meds I don’t get the rash and swelling for years I would get both a lot more through summer but I would get her tested for lupus it’s took awhile but I am on right meds and feet good

[PurpleButterfly81 in reply to diane46]

She has had ANA test, one was positive and the other was homogenous 1:160. They done another lot of bloods on the 16th January but we haven't had the results back yet.

[PurpleButterfly81 in reply to diane46]

Can I ask what medication you are on? We have been waiting for her consultant to give the go ahead for methotrexate injections.