Printable View
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!
Sent from my iPhone using Tapatalk
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!
Of course there are wg pediatric experts. @whatthewhat knows about them. I just saw that she wrote on the other thread.
Great! Certainly don't mind being wrong on something like this.... :-)
Thank you for your responses, I'll be looking up @whatthewhat and calling Cleveland Clinic tomorrow for a recommendation. God bless you guys!
Sent from my iPhone using Tapatalk
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.
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 ♡
YES!!!!! One of the ways Phil is her guardian angel :-)Quote:
Originally Posted by Alysia
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
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.
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.Quote:
Originally Posted by whatthewhat
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.
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. [emoji4] Thank you again for your thoughtful responses.
Sent from my iPhone using Tapatalk
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
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!Quote:
Thank you all so much for your help. We've decided to drive to Cleveland Clinic
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