Throat Closing

[Psyborg]

Maria,

I'd try contacting the Doctors in WeggieParents post directly.
Doctor Spaldings information is on this page: Steven Spalding, M.D. - Rheumatologic and Immunologic Disease, Cleveland Clinic

He ONLY sees Pediatric patients so you should not get that same run around.

[maria garcia]

Where is the Cleveland Clinic located? The one I called was in Fl.

We found an amazing pediatric ENT and rheumatologist at Cleveland Clinic who see my daughter (16yrs old). Dr. Krakovitz is the ENT and Dr. Stephen Spalding is the rheumatologist. They both specialize in Wegeners and seem to know everything there is to know. I can't brag on them enough! Dr. Krakovitz scoped her sinuses in his office and talked to us in length about how to handle WG and what to watch for. He scheduled a bronchoscopy the next morning at 5:30am! We drive 14 hrs every 6 months to visit with them and Dr. Spalding will consult with our local doctors in between visits on conference calls.

I understand your frustration. Our local ENT doesn't seem to take my daughters WG seriously either but Dr. Krakovitz sure does! I hope you can get to Cleveland Clinic. It's a wonderful place.

[Psyborg]

Ah...ok didn't know you were trying that one. Cleveland Clinic is in Cleveland Ohio, so maybe not the easiest solution, but they will give great care if you can manage the trip. UNC is probably the closest vasculitis center to Florida, but I'm not sure what Pediatrics people they would have.

[Psyborg]

I have no actual knowledge on these, but here is a page with with information on groups that offer free flights for medical care for Children if the price for such is too prohibitive for the family. I don't know your situation there, but wanted to offer this option if it might help you:

Airline Flights

That resource is for cancer patients, but I'd guess that the situation for a vasculitis patient is close enough that they'd have some say.

[drz]

I ask the local lab to fax my results to my doctors outside the local clinic and to mail me a copy. I can pick them up in the afternoon if I wish to make another trip to the clinic. My rheumatologist posts the lab results on their web site for with a program called "my chart" and it is usually on there the same day unless his nurse gets too busy. The mailed copy arrives the next day and I put this info into my my PDA with a Medical Chart program so i can track them. Some tests though like the ANCA and Azathioprine enzyme test have to be mailed to certain clinics and these take much longer.

[vdub]

I ask the local lab to fax my results to my doctors outside the local clinic and to mail me a copy. I can pick them up in the afternoon if I wish to make another trip to the clinic. My rheumatologist posts the lab results on their web site for with a program called "my chart" and it is usually on there the same day unless his nurse gets too busy. The mailed copy arrives the next day and I put this info into my my PDA with a Medical Chart program so i can track them. Some tests though like the ANCA and Azathioprine enzyme test have to be mailed to certain clinics and these take much longer.

Excellent service! This is the way it should be....