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Thread: Pediatric Wegener's Expert?

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    AnaMama's Avatar
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    Default 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.

    I know Cleveland Clinic has experts in Vascalitis diseases, but are there any pediatric rhuemotologist there with lots of GPA experience?

    I've already called the Vascalitis Foundation and they couldn't find s good fit for us.

    Thank you all so much!


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    I doubt you'll find one. Its hard enough to find a rheumy with any kind of experience with Wegs, however, it does seem to be getting more common. I would ask the people at CC for a recommendation. Most of the Wegs doctors that I've dealt with don't have any problem recommending someone from outside their organization. Good Luck!
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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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    Of course there are wg pediatric experts. @whatthewhat knows about them. I just saw that she wrote on the other thread.
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    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

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    Great! Certainly don't mind being wrong on something like this.... :-)
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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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    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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    Hi everyone -

    Our daughter was diagnosed in 2013 at the age of 14 & 1/2. She was initially presenting with extreme weight loss, rash, swollen and painful joints, severe stomach pain, and anemia; her pediatrician was testing out different diagnoses very rapidly as her condition worsened. At the time of diagnosis we were living halfway between San Francisco and Los Angeles, and as she was clearly very ill and we had family in Los Angeles we decided to go that direction. Children's Hospital in Orange County had Andrew Shulman as the pediatric rheumatologist on call, and he looked at the lab work for our daughter (whom I will refer to as DD from here on out) and said he would see her in two weeks. Thank God DD's pediatrician kept faxing other hospitals, and also that my spouse and I didn't let the matter rest either. Children's Hospital Los Angeles rheumatology division had Caroline Chang on duty, and after reviewing the lab results had us bring DD to the Emergency room, and told us she would be admitted from there. Which is exactly what happened, and with a HGB level of under 5 and an ESR of about 100, 5 different types of rash and almost immobilized due to pain, she was in terrible shape - and would not, as it turned out, have lasted the two weeks to keep that appointment with Dr Shulman of CHOC. It was then I realized the precarious nature of trusting even well-established doctors.

    Four days and many many tests later came the diagnosis of Wegener's Granulomatosis. CHLA at that time had 5 full pediatric rheumatologists and three of them had a fellow assigned to them, and at CHLA rheumatology every doctor reviews every case, so in effect there were 8 pediatric rheumatologists reviewing DD's case. They had dozens of pediatric-onset Wegener's cases under their belt; in fact, there were two other such patients that I know of in the hospital the same time as DD. Her treatment went well and she only spent 11 days in the hospital at diagnosis. ("I say "only" because with pediatric-onset Wegener's the diagnosis hospitalization can be as much as three or four months with induced coma, dialysis, and plasmapheresis being common occurrences.)

    Fast-forward to a year later and DD's labs started ticking in the wrong direction. Andreas Reiff (head of CHLA rheumatology) who was overseeing her treatment did not take these new labs results as overly concerning. By November there came a day DD's urine was the color of cola Bracha Shaham, the CHLA doctor on call, said it could wait, we said no, and took DD to CHOC (which was very near to where we had moved in Orange County.) DD almost lost her kidneys - again, if we had just accepted what was told to us we would be in a far different place today. My drive to be as educated as possible was affirmed to say the least.

    With her case transferred to CHOC, DD was seen by Cheryl Boone, who was at the time head of the two-person division pediatric rheumatolgy division. we had a terrible experience with Boone as far as her bedside manner, and apparently she had a reputation for being difficult. She is no longer there and Dr Shulman is now head of the division. I have heard good things about a woman hired under Shulman, but neither Shulman, Boone, Reiff, or Shaham would I suggest anyone go see.

    So. Here we are in the second-largest metropolitan area in America which is in the medical forefront of treating this disease and the two biggest Children's Hospitals had exposed their flaws. It was a sobering situation to be in, and a hard lesson for our adolescent daughter to learn; doctors are not infallible. DD is now working with Suhas Radhakrishna out of Rady Children's Hospital in San Diego. Dr Radhakrishna actually went through the Fellowship program at CHLA but he is more willing to be proactive in treatments and to stay on top of lab work, as well as listening carefully to patients. I would have no hesitation in recommending him to any pediatric rheumatology case.

    I have been very involved with other families across America and in a few other countries as well. I have listened carefully to their stories (because of dealing with minors we have a non-public space to talk) and have asked doctors along the way as well for national recommendations. Understanding that even a leader in the field such as CHLA might have flaws, and acknowledging that even flawed doctors can learn, grow, and change, here are the hospitals I would recommend for pediatric rheumatology and pediatric-onset Wegner's in particular:

    Texas Children's Hospital Our Team | Texas Children's Hospital
    Children's Hospital of Philidephia http://www.chop.edu/centers-programs...ology/our-team
    Caroline Chang in Honolulu (Kaiser) https://healthy.kaiserpermanente.org...g-5641781#/map
    Suhas Radhakrisha at Rady's San Diego Team
    Cincinnati Children's Hospital https://www.cincinnatichildrens.org/...umatology/team

    There are other pediatric rheumatologists who are good, but definitely if I had ANY questions about my child's care or was in a small hospital or my child was not getting their numbers in a good range I would ask my child's doctors to consult with one of the above. The Vasculitis Foundation will probably not be helpful in referrals, and at this writing are a bit behind in understanding the differences with adult and pediatric-onset Wegener's.

    I hope this was useful.
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    Thanks, dear wtw, for sharing the life saving info, and the most touching story of your daughter. I was not aware that there were so many "on the edge" issues in her care by the docs. Again and again we see in the forum, that dr. Phil's advice about being our own best dr. is so important. Life saving. I keep your daughter in my prayers ♡
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    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

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    whatthewhat is offline Registered Member
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    Quote Originally Posted by Alysia View Post
    Again and again we see in the forum, that dr. Phil's advice about being our own best dr. is so important. Life saving. ♡
    YES!!!!! One of the ways Phil is her guardian angel :-)
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    It looks like whatthewhat has some good suggestions for pediatric specialist to look into.

    I currently see a rheumatologist at Ohio State, and she's absolutely wonderful! She specializes in rheumatology and pediatrics, and I know she sees some kids with wegs. She is associated with Ohio State and Nationwide Children's Hospital. I highly recommend her! I contacted her via email while looking for a doctor with experience, and after talking with her I knew Columbus is where I had to move. She stays on top of my blood work and takes so much time to listen to any concerns I have. You can always contact her with any questions you may have. Her name is Dr. Stacy Ardoin, if you want to look into her as another possibility.
    https://internalmedicine.osu.edu/rhe...doin/index.cfm
    Last edited by rebekah; 11-13-2016 at 11:49 AM.
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    Nothing can break you; you are much stronger than you think... look at what you've already survived.

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    I think there must be more good pediatric rheumies, and rheumies who are competent to treat Wegs, than we know. They may just be harder to find, due to not being well-known. That is what is great about this forum. We can share such helpful information when we would otherwise be totally in the dark. Thank you whatthewhat, Rebekah, and others who replied.
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    Anne, dx'ed April 2011

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