Where to start, who to see?

[Tommyw]

Hello,

My daughter has just been diagnosed with discoid lupus, so we are slowly coming to terms with all that this will entail for her.

She's 9 years old and has had skin problems and horrible rashes whenever we have visited sunny countries, we finally had our diagnosis after being bounced between dermatologist and doctors for years who have given us all manner of creams for fungal infections and anti histamines for allergic reactions.

Last week we finally got to see a doctor who told us that all the hair she has now lost is due to having discoid lupus, we have been given some steroid cream for her scalp and also some pills -prednisolone- and we have been sent away... again, we will eventually see a paediatric doctor (being referred hopefully soon) who will hopefully tell us what drugs to take, our daughter has also had some blood taken to see if she also has systemic Lupus.

My question is should I just let the nhs deal with this over time, (already been pushed around for 3 years with symptoms) or do I need to see a specialist right NOW, sooner rather than later?

Nobody in the nhs are telling us about urgency or drug use etc.

We are in the south near Brighton and any advice about the first correct steps to make would be fantastic.

Many thanks.

T

[Hidden]

Hi Tommy,

Paediatric Lupus is fairly rare and as such ( if it were my child ) I would want her to be seen in a specialist centre, especially since the diagnosis has been delayed.

As you are in the South I would ask for a referral to Great Ormand Street in London. I know they are happy to work with local Consultants under shared care agreements. From memory I think that Dr Clarissa Pilkington is their Lupus specialist, I know that Prof Brogan and Dr Eletheriou are excellent as well.

gosh.nhs.uk/health-professi...

Your GP can make the referral .

[Tommyw in reply to Hidden]

Thats great, thanks Keyes

[Paul_Howard Partner LUPUS UK in reply to Tommyw]

Hi Tommyw ,

Hidden is absolutely correct that Dr Pilkington is the lead for lupus care at Great Ormond Street Hospital in London and this would probably be the nearest specialist centre for juvenile lupus. If you and your daughter can manage the journey, it may be the best place to get a referral to (at least to begin with). Hopefully when her lupus is being well managed she may be better off just being seen by a more local rheumatologist for monitoring.

If you need more information about skin involvement in lupus, we have a booklet that you can read and download at lupusuk.org.uk/wp-content/u.... We also have a booklet for young people with lupus at lupusuk.org.uk/wp-content/u.... If you need physical copies of either of these, just send me a private message or email [e-mail] with your name and address.

We also have a section of our website dedicated to information for young people with lupus - lupusuk.org.uk/lupus-in-you...

It has some useful resources such as an information sheet for teachers.

The blog section of our website also has lots of helpful articles - lupusuk.org.uk/category/blog/. One that may be of particular interest is about light sensitivity and has lots of advice for protection oneself - lupusuk.org.uk/coping-with-...

If you need anything else, please let me know and I'll do my best to help.

Keep us updated with how you and your daughter are getting on.

[Tommyw in reply to Paul_Howard]

Fantastic advice Paul, Ill definitely take this up with our Gp, hopefully I can get a referral, do you know of any direct way to get the referral you want ? or is it always through your local Gp?

Thanks so much for great info.

[Paul_Howard Partner LUPUS UK in reply to Tommyw]

Referrals do generally need to come through your GP.

[Cas70]

You are in a good county - try Prof Kevin Davies at Brighton and Sussex University. I just went to a talk by him - he has a Rheumatology Clinic at Brighton Hosputal - look him up I am sure he will refer you to Great Ormond St - you have to push and push with immune problems but a child should not have to wait. Good luck and keep us posted.

[Tommyw in reply to Cas70]

Thank you Caz,

Thats exactly the anxiety were dealing with, as she's young we need to set her on the right path before we make too many wrong turns.

will defo look him up, have to say its really helpful reading all the posts on here.

many thanks for responding.

[Cas70 in reply to Tommyw]

I went privately to an Immunologist who thought I had Sjogrens Syndrome but said I should go thru the NHS for the tests as it would be so expensive. Very good of him. After a year with NHS - I was told I had Discoid Lupus too. The Great Ormond St suggestions are obviously the best but be prepared for it to be a slow journey. You might consider Prof Davies as your local Rheumy as Paul suggests, any I saw were dismissive. Keep us posted.