Dustin is my 17 yo step-son. He has suffered from breathing problems since he was a baby. He has been to all sorts of specialists and the only thing they have been able to agree upon is that he has a lung restriction.
The general consensus had been that he suffered from asthma that was aggravated by allergies. He took the Methacholine challenge test and they determined that he didn't have asthma. The Dr. that was treating him at the time decided that the coughing and sniffing were possibly tics associated with Tourette's Syndrome.
Just before school began in August Dustin started another bout of problems. Within a week or so he was diagnosed with Pneumonia and started treatment. For the last two months he has been having breathing issues. He has been on and off Prednisone, Albuterol and various other drugs.
A few weeks back his pediatrician suggested taking the sweat test. The first test was inconclusive. He was retested and scored a 50. A third test confirmed the 50.
He is scheduled to take the genetic test next week. Thanks to the good people on this forum, we will push to get the full test.
I have read that we should seek out an accredited CF center for treatment. We do have one nearby, but the person in charge of the center, is the same doctor that suggested that his coughing was caused by Tourette's or a habit.
We have excellent insurance coverage (three plans) and are able to travel. Are there any centers (other than the one in Louisville, Ky that we should consider. Before the sweat test we were looking at taking him to the Cleveland Clinc, or to Barnes-Jewish in St Louis.
Any advice would be appreciated.
Terry
The general consensus had been that he suffered from asthma that was aggravated by allergies. He took the Methacholine challenge test and they determined that he didn't have asthma. The Dr. that was treating him at the time decided that the coughing and sniffing were possibly tics associated with Tourette's Syndrome.
Just before school began in August Dustin started another bout of problems. Within a week or so he was diagnosed with Pneumonia and started treatment. For the last two months he has been having breathing issues. He has been on and off Prednisone, Albuterol and various other drugs.
A few weeks back his pediatrician suggested taking the sweat test. The first test was inconclusive. He was retested and scored a 50. A third test confirmed the 50.
He is scheduled to take the genetic test next week. Thanks to the good people on this forum, we will push to get the full test.
I have read that we should seek out an accredited CF center for treatment. We do have one nearby, but the person in charge of the center, is the same doctor that suggested that his coughing was caused by Tourette's or a habit.
We have excellent insurance coverage (three plans) and are able to travel. Are there any centers (other than the one in Louisville, Ky that we should consider. Before the sweat test we were looking at taking him to the Cleveland Clinc, or to Barnes-Jewish in St Louis.
Any advice would be appreciated.
Terry