marian
10-12-2008, 02:35 PM
Hi
My grandson, Patrick, was diagnosed with Wegener's in August. He is 14 years old. The events leading up to his diagnosis are very similar to those I've read in many of the posts in here. He hadn't been feeling well for several months and our local doctors thought at first he had mono, then lyme's disease, then whooping cough and, finally, pneumonia. Regardless of what medications he was given, nothing helped. By early August, he was so sick it made us all cry. We finally took him to the local ER (for the umpteenth time) where a relatively new doctor thoroughly studied Patrick's charts. He sent us to the infectious diseases department of Fletcher Allen in Burlington, VT on Monday. By the second day, a two-year resident uttered the word Wegener's. At that, Patrick's group of doctors (Pat was the focus of intense interest at the hospital) really came to life and they started doing all kinds of tests. They were sure enough of the suspected diagnosis to start him on prednisone. They told me that Pat's kidneys were still unaffected and they wanted to keep them that way. Their diagnosis was confirmed the next day after test results came from Mayo.
He was diagnosed on the Wednesday. By Friday, he was feeling well enough to come home. By mid-September, he was feeling well enough to attend football practice. Over the past three weeks, he has been playing in the freshman games. Today, we played golf.
I have been doing as much studying as I can about the disease, the medications, and learning about what his doctors call Patrick's "new normal." His response to all the medications is ahead of what they expected. So, we have all breathed a sigh of relief. He is alive, he is in good spirits, and he is feeling great.
I'm curious about one thing that I have read. And, I wonder if this issue might explain why some people go into long remissions and others have problems...other than the speed in which the disease was diagnosed.
There seems to be a difference in the actual cause of the disease. Some cases seem to be viral while others seem to be infectious. I read that some infectious cases can disappear as mysteriously as they appeared. While the viral types are harder to control.
Has anyone else heard of this?
Best regards to everyone....
Marian
My grandson, Patrick, was diagnosed with Wegener's in August. He is 14 years old. The events leading up to his diagnosis are very similar to those I've read in many of the posts in here. He hadn't been feeling well for several months and our local doctors thought at first he had mono, then lyme's disease, then whooping cough and, finally, pneumonia. Regardless of what medications he was given, nothing helped. By early August, he was so sick it made us all cry. We finally took him to the local ER (for the umpteenth time) where a relatively new doctor thoroughly studied Patrick's charts. He sent us to the infectious diseases department of Fletcher Allen in Burlington, VT on Monday. By the second day, a two-year resident uttered the word Wegener's. At that, Patrick's group of doctors (Pat was the focus of intense interest at the hospital) really came to life and they started doing all kinds of tests. They were sure enough of the suspected diagnosis to start him on prednisone. They told me that Pat's kidneys were still unaffected and they wanted to keep them that way. Their diagnosis was confirmed the next day after test results came from Mayo.
He was diagnosed on the Wednesday. By Friday, he was feeling well enough to come home. By mid-September, he was feeling well enough to attend football practice. Over the past three weeks, he has been playing in the freshman games. Today, we played golf.
I have been doing as much studying as I can about the disease, the medications, and learning about what his doctors call Patrick's "new normal." His response to all the medications is ahead of what they expected. So, we have all breathed a sigh of relief. He is alive, he is in good spirits, and he is feeling great.
I'm curious about one thing that I have read. And, I wonder if this issue might explain why some people go into long remissions and others have problems...other than the speed in which the disease was diagnosed.
There seems to be a difference in the actual cause of the disease. Some cases seem to be viral while others seem to be infectious. I read that some infectious cases can disappear as mysteriously as they appeared. While the viral types are harder to control.
Has anyone else heard of this?
Best regards to everyone....
Marian