My son is almost 5 months old and is on enzymes, iron, vitamins, and just switched from zantec to prevacid and CPT 2x a day for 15 minutes. He cultured a bacteria last month and is gone now and this month cultured a staph arius (or something like that). He is being treated again with Bactrum.
We are not doing breathing treatments or salt at this time. I smooch on his neck and cheeks all the time and he never tastes salty so I guess that is good, right? He is the happiest little guy and you would never know he had CF as he shows no signs. He only had a little cough and that is why our pulmnologist decided to do a throat culture these last two months.
We do not go to a CF Clinic, rather a pediatric pulmonologist who is awesome. I just want to make sure we are proactive with our treatments to keep him healthy. Jack was born almost a month early and spent 26 days in the NICU - but never any real problems - just trying to get him to gain weight, take bottle and get on enzymes. He is now 12lbs 9.5 ounces and looks healthy, although he is really low on the growth chart. He goes to a home daycare and has been there since he was 13 weeks old.
I have been looking for a CF support group around our area, but I haven't had any luck finding one. I live in the St. Louis, MO area - anyone know of one? Our CF Foundation office has been useless.