Hi I'm new here and my son has been diagnosed with urticarial vasculitis, I just wondered if anybody else has a child with it thanks

[Betty4]

[John_Mills Volunteer]

How old is your son Betty? We maybe able to help and put you in touch with other young people and their families.

all the best

Susan

[Betty4]

Hi he has just turned 9 and was only diagnosed last year after a biopsy, has been suffering with it since he was about 3 thanks

[John_Mills Volunteer]

Who does he see? We do know of a little boy of 10 he sees both his regular consultant and Paul Brogan at Great Ormond Street hospital.

[Betty4]

We live in Fife and at the moment he only sees Dr Allan at the dermatology ward at the queen Margaret hospital. He has just had more bloods taken last week and had a chest X-ray, she says he will be refered on once she receives the results! The last year he has had less time between each flare up and also started to suffer severe swelling in his joints and glands under arm and groin,sore heads, blood shot eyes, sore tummy, blistering etc His doctor did say she would be conferring with doctors at sick kids but not which one.

[Veronicab Volunteer]

HI, I would echo Susan's recommendation of Paul Brogan (who is Scottish even though he works at GOSH). My daughter had her first episode of leukocytoclastic vasculitis at age of four, and we were finally referred to GOSH at age 11. Even if you can't get to London, Paul may be able to recommend a suitable paediatric rheumatology consultant closer to home. On the other hand, we turned trips to London for consultant appointments into wonderful family treats. Very best wishes to you and your little son.

[Betty4 in reply to Veronicab]

Thank you, he still hasn't had his results back however since the last swelling episode in his ankle he has had pain in it. Sometimes it comes as a sharp shooting pain which has him crying with the pain! My mum works at the dermatology ward and asked his doctor if I should take him to a+e but she says she has his results back and would be getting in touch this week, not to take him as it is likely tissue damage and she would explain it all when she sees me! The not knowing whats going on and how best to help him is hard especially when no one has even heard of it