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.

1 Reply

  • 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 if this helpful?

    Have you been in touch with the Vasculitis Foundation in the US or Vasculitis Canada?

    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.


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