YES, YES, YES! You cannot "catch up" by starting them after symptoms appear. I know a lot of people may have been lucky to have went many years without doing the nebs but how many of them have pretty clear lungs today? I know there are some but I would bet the majority of people wish they had know to start from the beginning. CF is a behind-the-scene's disease. We don't always know what's going on until it's too late and symptoms appear (for some, further down the road). My son was diagnosed with CF at 9 days old, while he was at Children's hospital on day 2 for surgery to remove an intestinal blockage. We were overwhelmed with different doctors and their treatment/non-treatments advise. One told us not to do treatments until he started to cough on a regular basis. The other told us to start immediately. We were confused and I was hoping not to have to do all these daily things. It would have been easy to listen to the first doctor but then the second doctor stopped us in the hospital parking lot (he was heading to lunch) and rested his hand on my arm, to emphasize the importance of preventative treatment. We started as soon as we got home with a nebulizer and a rubber "thingy" (forgot the name) and we pounded him twice a day, immediately after using Alburterol to open his airways. He started on the vest when he was two years old. We are very aggressive with treaments and we make sure that we have a list of questions for the doctors at clinic visits but we don't take all of their advise and we check EVERYTHING out before we commit. We have found many inconsistencies with the CF team and they tend to treat all patients the same, although each is so completely unique, even those with the same mutations. I would rather do daily treatments, then think of how to get the gunk from his lungs after years of building. My son is on Albuterol, Pulmozyme and Hypertonic Saline, twice a day with the vest, 30 minutes, twice a day. Yah, sometimes it's a pain in the butt to work around the treatments but most days it's so part of the routine that he doesn't notice. The best part is, his lungs are almost totally clear. He doesn't have a cough and his weight and height are 98th percentile. He cultures staph most of the time too but they don't treat and they don't elborate on if it's normal. Looking back, I am so happy that we took the advise to start "preventative" treatments.
Sould we be doing breathing treatments
- Thread starter Mistyjo
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