Tiffany Kruit
New member
Im hoping someone can help me understand all this, my sons mutations were found at his new born screening he had a sweat test as a newborn and everything was in normal range they repeated the sweat test at age 6 months his chloride levels went up a bit so we went for another test at age 1 then his chloride levels were up even more and he was diagnosed with cf he is now almost 4 and has had no real issues with cf he has check ups every 3 months but nothing has ever really changed i have two other kids and he doesn't seem to really get any sicker then them. Im frustrated because he is on a vest twice daily with albuterol in his neb plus pulmazyne in the evening. They just recently started him on klydeco also why does he really need all these treatments and meds if he has no symptoms he is at that age where everything is a power struggle and then we have to add all the treatments as a struggle also. I feel we are pumping him full of unnecessary medication when hes never really been sick. They always ask me hows his cough doing but he doesn't have one im confused. Anyone else been in similar situation maybe could give me advice or just maybe make me feel better about pumping my son full of these meds.
Thanks: )
Thanks: )