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Type: Posts; User: AnaMama

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    Thank you all so much for your help. We've...

    Thank you all so much for your help. We've decided to drive to Cleveland Clinic to see Dr. Zeft, a pediatric Wegener's specialist, and perhaps also a CC pediatric Wegener's nephrologist. We decided...
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    Thank you for your care and warm welcome to this...

    Thank you for your care and warm welcome to this forum. I truly appreciate it. I know I'll be here asking questions as we learn how to live with this beast of a disease. This forum is such a rich...
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    Thank you for your responses, I'll be looking up...

    Thank you for your responses, I'll be looking up whatthewhat and calling Cleveland Clinic tomorrow for a recommendation. God bless you guys!


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    Pediatric Wegener's Expert?

    My 12-year-old has Wegener's and I'm wondering if anyone knows of a pediatric rhuemotologist with a lot of experience in Wegener's? I live in Kalamazoo, MI and I can drive 5 or 6 hours if I have to....
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    Thank you Annekat. Our doc did put me at ease...

    Thank you Annekat. Our doc did put me at ease about the decision to wait on the Cytoxan.

    The kidney biopsy results weren't good. She has only 10% of her kidneys with good function, 30% are in...
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    I appreciate your perspective, Annekat. Im...

    I appreciate your perspective, Annekat. Im feeling pretty good about our care at this point. I think the Cytoxan wasn't used right away because Bactrim must also be used if Cytoxan is used and, as I...
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    This is what is happening with my daughter. The...

    This is what is happening with my daughter. The protein in the urine had been steadily rising even though it's been over a month since her first rituximab. She's had two RTX infusions so far. Her...
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    Thank you so much for your reply, mater. I...

    Thank you so much for your reply, mater. I love that your daughter just wanted you to read Jane Austen to her. We've been indulging in movies and frequent trips to the gift shop. So bad! ;)
    I'll...
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    Gab122, I completely identify with this story. ...

    Gab122, I completely identify with this story. Thank you for sharing.


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    Thank you, Annekat. I'm getting the sense that...

    Thank you, Annekat. I'm getting the sense that we will need to try the Cytoxan, and do it soon. She's laying in the sedation room right now for her second biopsy, but I feel like I can already tell...
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    Thank you for the thoughtful response, Pete. I...

    Thank you for the thoughtful response, Pete. I will truly appreciate your concern and plan to take action on your advice.


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    Thank you for your replies! We have done a blood...

    Thank you for your replies! We have done a blood transfusion and an albumin transfusion. Drz, she was given a rituximab infusion & high dose steroids for 5 days via IV after diagnosis, & she's been...
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    Diagnosed 11-year-old

    I'm Ana's mom, my name is Carrie. Ana is my precious daughter. She was diagnosed with Wegener's on Sept 27th, 2016. She just had her birthday a couple of days ago, here on the hospital, and now...
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