Emily started Pulmazyme a few months ago. At the 3mo point, her pft's had increased well over 10% from what her average had been for the year prior to starting it and she coughs a tremendous amount now while vesting. She also didn't get overly sick the last time a cold was in the house- for the first time in I don't even know how long! I am very glad she's started it.
As far as why she started when she did: She'd started showing some mild signs of respiratory involvement on a more chronic basis in the months before starting. We'd considered starting a while before we did but there was something else new we were doing (starting meds for asthma symptoms) and we didn't want to make several changes all at once. Based on the discussions we had about it prior to her starting it, our clinic has most kids by around age 6 on it; starting younger if they develop symptoms of pulmonary involvement.
I agree with what's already been posted: all the meds our kids take have extensive lists of potential adverse reactions associated with them. We have to be vigilant, esp when they start something new, and never hesitate to take our concerns to their doctors. Staying long-term on a med that proves to be useless makes little sense as well; it often takes a lot of switching around to find the best combination of things to gain the best results (so open-minded drs are key!) But considering the benefits vs. risks is so important. Preserving lung function while disease is still mild is so much easier to do than damage control later when the disease is more advanced.
As far as why she started when she did: She'd started showing some mild signs of respiratory involvement on a more chronic basis in the months before starting. We'd considered starting a while before we did but there was something else new we were doing (starting meds for asthma symptoms) and we didn't want to make several changes all at once. Based on the discussions we had about it prior to her starting it, our clinic has most kids by around age 6 on it; starting younger if they develop symptoms of pulmonary involvement.
I agree with what's already been posted: all the meds our kids take have extensive lists of potential adverse reactions associated with them. We have to be vigilant, esp when they start something new, and never hesitate to take our concerns to their doctors. Staying long-term on a med that proves to be useless makes little sense as well; it often takes a lot of switching around to find the best combination of things to gain the best results (so open-minded drs are key!) But considering the benefits vs. risks is so important. Preserving lung function while disease is still mild is so much easier to do than damage control later when the disease is more advanced.