User Tag List

Likes Likes:  0
Page 2 of 2 FirstFirst 12
Results 11 to 17 of 17

Thread: Pediatric Wegener's Expert?

  1. #11
    Join Date
    Apr 2013
    Location
    San Diego, California
    Posts
    300
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.

  2. #12
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,912
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    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

  3. #13
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,159
    Post Thanks / Like
    Mentioned
    10 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  4. #14
    Join Date
    Nov 2016
    Posts
    13
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.


    Sent from my iPhone using Tapatalk

  5. #15
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,912
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    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!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  6. #16
    Join Date
    Nov 2010
    Location
    ~46N1165W
    Posts
    1,900
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default

    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!
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  7. #17
    Join Date
    Nov 2015
    Posts
    176
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    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.

    Sent from my SM-G920V using Tapatalk

Page 2 of 2 FirstFirst 12

Tags for this Thread

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •