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Thread: Pediatric Wegener's Expert?

  1. #11
    whatthewhat is offline Registered Member
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    Yes, for sure, Anne. Like Nationwide, for example, I know has a good ped rheumy dept as far as they have a good reputation with juvenile arthritis & a parent/rheumy coalition for improving patient care, but I haven't heard anything about how they are at treating pediatric-onset WG.
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  2. #12
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    Quote Originally Posted by whatthewhat View Post
    Yes, for sure, Anne. Like Nationwide, for example, I know has a good ped rheumy dept as far as they have a good reputation with juvenile arthritis & a parent/rheumy coalition for improving patient care, but I haven't heard anything about how they are at treating pediatric-onset WG.
    Neither have I, but I wouldn't. I just think we have a good network here and on Facebook for ferreting out any good WG docs in various localities, pediatric or otherwise. I think the recommendation of going through the CC or other known good WG clinics is a good one. Some of those may be experienced at treating WG in children as well as adults, or can recommend those who are. Also, some University teaching hospitals might be a resource. I do not have a child but my heart goes out to all of you and your children who have WG.
    Anne, dx'ed April 2011

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    Here's a random thought...

    If you're searching for a pediatric rheumatologist who treats wegs and can't find one, Go to a rheumy for a consult and ask how they would treat their child with Ana's presentation.

    FYI, Dr Villa Forte at Cleveland is in her 40s and has two kids. She also does a medical mission trip each year, so she sees a variety of other conditions - some of which she probably doesn't see at home.
    Last edited by Pete; 11-15-2016 at 09:16 AM.
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    Pete
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    AnaMama is offline Registered Member
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    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 it couldn't hurt matters and it very well might help. BTW, I'm so pleased to report my daughter has had 3 straight days of feeling better. Thank you again for your thoughtful responses.


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    I'm really happy to hear that, Carrie! This sounds like a really excellent decision to make at this point in time. Your local doc may be able to work with these docs from a distance, once Ana has established a relationship with them and they have had their input on her case. Some people see these big specialists a couple times a year and their local docs the rest of the time.Big hugs and best wishes to you both, and so glad Ana is feeling better!

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    Anne, dx'ed April 2011

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    Thank you all so much for your help. We've decided to drive to Cleveland Clinic
    That's great! And, it sounds like you got an appt fairly soon. Is that right? I hope so... Best of luck and let us know!
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    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Psoriatic Arthritis - dx May12, Hypoparathyroidism - dx Jul15, Subglottic Stenosis - dx Jan16, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
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    Aneinu is offline Registered Member
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    Rainbow university hospital also has some very good ones. Dr Elizabeth Brooks and Dr Angela Robinson are very good.

    Hope your daughter is feeling well.

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