simmonstrout

Hello, I've read through this thread and have tried to pursue Dr. Van Mater at Duke for my daughter, who has been suffering with PANs for the past 5 years. Her doctor and I have been searching for years, trying to treat for various things, and finally landed on this diagnosis (Cunningham Panel came back positive for all but one marker). The problem is that Duke said we have to submit an application for approval. My dr submitted the materials, and they denied us admittance into their program to treat AE. My daughter was never observed, it was based on the application. So, I moved on to a Dr. O'Connor at AAIR in Charlotte. She took our money and started my daughter on antibiotics and ibuprofen (she is already taking a ton of supplements including a lot of anti-inflammatories). She said the next step is steroids, then IVIG. She does not submit to insurance, which I'm familiar with. What is difficult, however, is her office staff is very unorganized and unaccommodating. I've asked for a receipt with codes so that I can submit to insurance for our in office visit (which cost $1200). They are unable to provide me with a receipt that has procedure codes so that I can submit to insurance. So, after going around in circles with this doctor and her office, I am wondering if I should try Duke again and be more persistent. Or are there other doctors in the area now that provide PANs treatment? Does Duke do IVIG and does any of it get covered by insurance? Are there any other treatments offered there or anywhere else? Or is IVIG the most effective treatment used? I appreciate any information you can provide or point me to. Thanks!