Is anyone on here from the Denver CO area that has a great doctor Getting...
Hi Chris Sanders can I ask where your son has been seen? My teenage daughter was seen in the region and treated blindly with high steroids caused necrosis in both hips. We had to go to Mayo Clinic to get a diagnosis. Please message me if you would like to talk. Best of luck for your son.
Hi Chris - i live in Highlands Ranch and see a Great DR for my Wegener's/GPA. He does not specialize in Vasculitis, so i follow up with the Mayo Clinic every few years, but they have always told me he is doing everthing right. If you're interested - shoot me a note at email@example.com and I'd be happy to provide contact details.
Xxxxxxx Yzzzzzz - we're in Albuquerque, and have some great docs here at University of New Mexico Hospital, but as soon as my son (15 years old, Weg/GPA) was stable enough to travel, we went to Cleveland Clinic. It was well worth the effort to get my insurance company to approve it. Now we have the Cleveland Clinic docs collaborating with our NM docs.
Hi Chris Sanders- what type of vasculitis does your son have? I hope you are able to connect w/some docs that will help you. IF you are able to get to Cleveland Clinic or another vasculitis center that would be best. Nicole Schieferstein- what type of vasculitis does your teenage daughter have? My 17 year old has PAN/CNS and we've been thru hell. Her first Rheumy treated her w/steroids only and has done a lot of damage to her poor young body.
Audrey she has MPA. Her name is Cierra Elwood and she is no longer a teenager she is now 20. That is exactly what the Rheumy in Denver did to my Daughter. I truly believe Mayo saved her life.
Audrey, This is part of what we are still trying to figure out. It has been difficult to find the right treatment when we don't have a conclusive diagnosis yet on what is causing the vasculitis.
Hi Chris Sanders It sure is tough seeing your child sick. I've been there with my daughter through several serious and potentially life-threatening illnesses. I have Takayasu's too. Many forms of vasculitis can be potentially life threatening. Plus, it can be difficult to find doctors who have the expertise to diagnose and treat it. That said, having your son see at one of the vasculitis centers would be best. As my doctor at the vasculitis center at Boston University said, "Treating vasculitis is an art and a science."
MJ Pfantz- check out the messages above from vascys in your area. Hope it helps.
I am so sorry about your son-hope you get on the path to answers for him.
How far are you from Salt Lake City, Chris. There is a vasculitis center there. Probably the closest one to you. http://medicine.utah.edu/internalmedicine/rheumato logy/vasculitis/index.php