Hi. My name is Kim. My 12 year old daughter was recently (Feb 2012) diagnosed with Wegener's. We live near Nashville so she's been to Vanderbilt Children's for her treatments. She was hospitalized most of the month of Feb and into March.
Thankfully we got a diagnosis pretty quickly. Our pediatrician thought she had JRA and sent us to a rheumatologist at VCH. Within 5 min he knew it wasn't JRA and suspected Vasculitis. That was on Friday, Feb 3. Over the weekend Bethany continued to get worse and was admitted to VCH. This stay was 9 days long and that's when we got the WG diagnosis. She was discharged from hospital on 2/13. On 2/16 I delivered our 5th child via c-section (breech baby). On 2/19 baby & I came home from hospital. On 2/20, Bethany was readmitted to hospital. This was a 3 day stay. Then on 2/24 she was admitted again. This was a 2 week stay. During this stay she had seizures and ended up in PICU and had ICU psychosis which meant major hallucinations etc... They say she also has PRES.
She's currently on 40mg of Prednisone (down from 50). While in hospital they did the three pulse of Pred. Those were 1,000 each. She's currently going in once a week for Cytoxan. She has finished her Rituximab. She's also on Bactrum, anti seizure meds, anti hallucination meds, calcium, iron -- seems like there is more but that's all my brain can come up with at this time. :-)
I'm glad to have found this forum for support and encouragement.
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