My son is 16 and diagnosed with cns vasculitis

Took my son into Er on dec. 15 and they originally stated he had a stroke then couple hours later stated vasculitis. He had been in to see doctor a couple months earlier for a 10 day headache period that was never really answered. We are six days into this and another rheumatologist says today we need a brain biopsy, angio something, and a tte I think which is something for heart. This new doctor on the case wants to make sure it is 100% vasculitis and says there may be a cause. We were told a few days ago it is vasculitis and were on a protocol and now this is dropped on our family. We are torn and looking for any possible advice or help. We live in a smaller community in central Wisconsin and are known nationwide for our clinic. Any help would be greatly appreciated from the bottom of my heart.

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  • Hi, So sorry to read your post. CNSV is extremely rare and is even rarer in children and young people.

    We do have a page on the VUK website about CNSV vasculitis.org.uk/about-vas... if this helpful?

    Have you been in touch with the Vasculitis Foundation in the US or Vasculitis Canada? vasculitis.ca/

    Is it the Mayo Clinic quite close to you Bear67? I do believe they have doctors there who have a special interest in all types of Vasculitis.

    Susan

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