Can anyone recommend a paediatric rheumatologist in Home Counties/London?

[Horsewhisper]

Hello friends, my 15 year old niece is suffering from severe joint pain, muscle ache, fatigue, brain fog, rashes and pretty much constant menstrual bleeding. There is autoimmunity on both sides of the family (MS, UCTD, CIDP and Guillane Barre) and despite my niece being unwell for 2 years the docs don’t seem to be interested in investigating anything autoimmune related. Any suggestions regarding a suitable consultant would be very much appreciated. I hope you are all as well as you can be and thank you for reading xx

[Lily77]

I can recommend Dr Wendy Holden who works privately out of the Candover Clinic at Basingstoke Hospital but also for the NHS out of the North East Hampshire hospital also at Basingstoke. With very best regards, Lily

[Horsewhisper in reply to Lily77]

Thank you Lily for getting back to me - I’ll pass this on to my bro’ - hope you are doing ok xx

[Wendy39]

Hello

Sorry to hear about your niece. How awful for them all.

I would say ask Paul Howard at LUPUS UK.

I know that Alder Hey in Liverpool is a Centre of Excellence for Paediatric SLE but I am not sure if there is anything closer to London, that is considered a C of E or Lupus expert for children.

I hope you find someone and that she can get the correct diagnosis and treatment, poor girl, she's too young to be left suffering like that.

Best wishes

Wendy

[Horsewhisper in reply to Wendy39]

Thanks Wendy for getting back to me and suggesting contacting Paul, I hadn’t thought of that, so I’ll drop him a note right now. Lily kindly made a suggestion too. Poor lass has missed 3 consecutive weeks off school this term, missed all sports fixtures and going out with friends. Not nice at all for her and so not normal either. Hope you are ok xx

[Wendy39 in reply to Horsewhisper]

I'm doing OK thank you. You? x

[Horsewhisper in reply to Wendy39]

Yeah well ticking along, just waiting for an endoscopy appt to come through as a recent barium swallow showed thickening of oesophageal tissue, along with narrowing and muscle weakness in that area. What with Raynaud’s, Sjögrens UCTD and little hard white bumps appearing on my finger joints, Scleroderma has been suggested so that’s being investigated. There’s always something to contend with isn’t there? But I get a lot of re-assurance and loads of useful info from this forum which keeps me grounded and informed about new symptoms etc. I like keeping up to speed with reading posts on here about the Welsh situation and how you all provide suggestions and support. Helps with all round warm fuzziness whilst I’m having a lie down after loading the washing machine and putting the shopping away!! 🤗 xx

[Paul_Howard Partner LUPUS UK]

Hi Horsewhisper ,

Great Ormond Street Hospital in London has an experienced team of consultants and offer excellent care. They are part of the UK JSLE (childhood-onset lupus) Cohort and actively involved in research. They also work closely with UCLH for transitioning children into their adolescent rheumatology clinic. This is much better than going directly into adult clinics after 16.

[Horsewhisper in reply to Paul_Howard]

Hi Paul, thanks for getting back to me. My sis in law rang the London Lupus Centre and they recommended Dr Clarissa Pilkington at GOSH, who deals with symptomatic teens. She’s going to try and get an appointment with her. It’s good that they have a juvenile focus, thanks again.