Confused over diagnosis for daughter -Urticarial Vasculitis

[JoT2014]

Hi I m a new member and would like some advice regarding my 11 yr old daughters diagnosis. Since she was under 5 she has been having blistery rashes mainly on her hands, occassionaly on her feet. Various visits to our gp has not resulted in anything much other than steriod creams, wrong diagnosis (moloscum contagiosum) and pretty much no one really listening to how it has affected my daughters confidence. Finally last year I managed to get her refeered to a paediatrician. He was intrigued by the photos that I took along but was unsure of a diagnosis. At the time of referral my daughter had had strange joint swelling along with the rashes, we were referred to a dermatologist in Worcester in June this year. She diagnosed urticaria and did mention the word vasculitis but did not expand any further what this meant. As anti histamines helped with the rashes we were just advised to keep taking them. Blood tests were taken and at a follow up appointment back at Kidderminster the paediatrician went through all the test results, some of which were raised which he explained was in line with an allergic process. We have been referred to Birminghams Childrens Hospital but have yet to hear anything. This week my daughter has one knuckle joint which is swollen, but not painful, and 1 finger that has swollen and painful. I am waiting to hear from the paediatrician for best treatment. My concerns have been raised when I read about vasculitis and actually how serious it is. Should I be more concerned for my daughter as this could be a lifelong illness for her and no one has really informed us about it. I hope this makes sense to someone!!

Thank you for taking the time to read this xxx

[Lupylass]

Hi there

I'm sorry to hear that your daughter has had such a long journey with symptoms and no real diagnosis.

I hope your appointment for Birmingham comes through soon so that you can get some answers.

Vasculitis UK provide some good information on the different types of urticarial vasculitis

vasculitis.org.uk/about-vas...

Perhaps be reading a bit more about it (apologies if you have already) you can then ask the consultant questions to get the answers you need. Could you phone the consultant you saw already to ask for clarification?

I have urticarial vasculitis. Mine is linked to SLE. Although it is a chronic condition which requires ongoing treatment and follow up, I live a normal and active life. I'd never wish this on your 11 year old daughter but it is possible to have it in a mild form and it can go into remission or clinical quiescence.

I hope you get answers, and good news, very soon xxx

[John_Mills Volunteer]

Hi Jo, I think it is very reasonable for you to be concerned as it is now obvious that it is more than just a skin condition. It needs full investigation, as there could be several possible causes for her symptoms.

You would expect Birmingham Childrens Hospital to be aware of all possibilities and Birmingham QE is one of the top centres in the UK for vasculitis treatment, so there is all that expertise available on site. So I would press for that appointment at B'ham to be brought forward.

As a holding operation, get your GP to run a check on kidney function - this could be a bloodtest or even just a cheap & cheerful urine dipstick will do. Some types of vasculitis that affect children and young people can involve the kidneys and there are no symptoms of this until it is well advanced, so a quick check can establish if there is cause for concern and an urgent need to speed up the referral.

Hope this helps - John

[Cvansidener]

Im no doctor.... but I am a sufferer of urticarial vasculitis...which for me causes raised welts and rash all over my body and sometimes they burn and itch. With vasculitis the welts will leave discoloration or bruising after they go away for about 48 hours, then they go away eventually. Cool showers or oatmeal baths help relieve the discomfort some. One way to test for sure for vasculitis is to have a dermatologist do a biopsy of the skin. I am a mom to a 11 year old as well and can only imagine how frustrating it must be for you...hope this helps a little.