Child has had 2 C-ANCA positive results is this cause for concern?

[BoBo10]

My daughter is now 10yrs old and in recent years has developed Asthma and Cold Urticaria during a visit recently to our local hospital regarding the Cold Urticaria I was asked about blood tests she had had done when she was around the age of 5 when being investigated at another hospital for vasculitis due to unexplained fevers, joint pains and blood in her urine. I was told at this time that she had tested c-anca positive but a second test done at our local hospital a few weeks later showed her to be c-anca negative. However at our recent appointment when I was asked about the blood tests I was informed that she had in fact tested positive the second time too and the Dr asked me what was done about it. I said I had been told the second test was negative and she was discharged a year or so later. She has since as I said before developed asthma and cold urticaria and continues to suffer joint pain and fevers with 'no focus'. The Dr we saw recently said he would contact the Dr she had been under when younger regarding the fact that she had twice tested c-anca positive but that was in July and it is now October and despite contacting the hospital on numerous occassions we have heard nothing more. We are obviously a little anxious that something has been missed as my daughter is now daily complaining of pains in her joints and chest. Can you be c-anca positive but have no illness at all? Would really appreciate any advice.

[Hidden]

Hi BoBo,

A positive ANCA means nothing in itself, was your daughter MPO or PR3 positive as well?

Some patients can be ANCA positive but it needs to be looked at in conjunction with other signs and symptoms.

Your daughters symptoms are certainly concerning and I think the issue here is lack of follow up. Have they ever ruled out one of the periodic fever syndromes?

Where are you in the UK and hopefully we can point you in the direction of an appropriately experienced paediatrician.

It might be an idea to phone or e mail the VUK helpline, I am part of the Helpline team and can be e mailed on [e-mail].

Best wishes

Lynn

[BoBo10 in reply to Hidden]

Hi Lynn

Thank you for replying, when she had the initial c-anca positive test the letter states that there was insufficient blood sample to run an MPO or PR3 antibody screen and also not enough blood for C3 and C4 but the ANA was negative. In the same letter it says a throat swab grew group A strep and he asks for a repeat ANCA screen locally and the results forwarded to him.

The next letter dated 9 months later asks for her C3 and C4 to be checked locally again as he has no results for them but says the rest of the screen was normal-tho the Dr we saw locally recently said it was c-anca positive again.

He said he wasn't convinced that things had been followed up after the 2nd ANCA screen and with her on going symptoms and now developing asthma and cold urticaria its just left me feeling a little concerned.

Just to clarify can you be c-anca positive and be perfectly healthy?

Thank you again

Lisa

[Hidden in reply to BoBo10]

Yes you can be cANCA positive and healthy but I would want to know why they ran the ANCA in the first place as it's far from a routine test.

It sounds to me as if your daughter needs an appt with someone who will look at her symptoms and blood results as a whole.

Children especially can get overlaps between auto immune, auto Inflamatory and immunodeficiency diseases and auto antibodies can cross react.

The important thing is seeing a Consultant who has the experience to look at the whole clinical picture.

[veeb16]

Hi BoBo,

I have an 11 year old daughter who was just found to be c-anca positive. I am of course very concerned about what this could mean. I was wondering how your daughter is doing. Is she still anca positive?