We went to the other CF clinic here today since they have a better track record of follow-up between appts. We were told that Owen has severe asthma of a rare type that causes a build up of mucus vs. wheezing and reactions to cold/exercise/allergies. They said he needs CPT to get the junk up since he is really phlegmy. They are taking him off alubuterol nebs since they made his cough worse but we were finally trained in CPT. He could easily cough up sputum for a culture which is good.
Their reason for thinking he does not have CF is that they think it is this "rare severe asthma" and because the dose of Creon which is helping him is lower than the needed dose of the average CF patient, so it cannot be CF.
Holy cats and kittens.
In my bones I know this is all a bunch of hooey. The mucus, imho, has settled in his lungs and the albuterol is helping to get it out. CPT only helps that more. I also question A) that PI cannot be a spectrum symptom where people require different amounts of it to thrive (and in his case, make him not vomit and have horrid stools) and B) if the treatment for asthma (albuterol nebs) makes him "worse" how can it be asthma??
Anyway, they classified his finger clubbing as moderate and his toes as severe so they know he has lung disease, they just don't think he fits the CF profile. In the meantime, we are going to stick with them because their availability to assist is much better than the other clinic and we hope that over time, all of this will become more clear. We will do CPT and inhalers and go in for rechecks until he either gets better or they figure it out. I know so many haev been told it is asthma and food allergies or what have you before the CF diagnosis is made. Maybe Owen doesn't have CF. I don't know. But until his lung scans are clear, his mucus is drained and his cough goes away (and preferably he no longer needs Creon, ya right) I will be on the phone or in their office until they figure it out.
So, now we learn to live with if it looks like a duck, and it quacks like a duck, it's not a duck. Ugh.
Their reason for thinking he does not have CF is that they think it is this "rare severe asthma" and because the dose of Creon which is helping him is lower than the needed dose of the average CF patient, so it cannot be CF.
Holy cats and kittens.
In my bones I know this is all a bunch of hooey. The mucus, imho, has settled in his lungs and the albuterol is helping to get it out. CPT only helps that more. I also question A) that PI cannot be a spectrum symptom where people require different amounts of it to thrive (and in his case, make him not vomit and have horrid stools) and B) if the treatment for asthma (albuterol nebs) makes him "worse" how can it be asthma??
Anyway, they classified his finger clubbing as moderate and his toes as severe so they know he has lung disease, they just don't think he fits the CF profile. In the meantime, we are going to stick with them because their availability to assist is much better than the other clinic and we hope that over time, all of this will become more clear. We will do CPT and inhalers and go in for rechecks until he either gets better or they figure it out. I know so many haev been told it is asthma and food allergies or what have you before the CF diagnosis is made. Maybe Owen doesn't have CF. I don't know. But until his lung scans are clear, his mucus is drained and his cough goes away (and preferably he no longer needs Creon, ya right) I will be on the phone or in their office until they figure it out.
So, now we learn to live with if it looks like a duck, and it quacks like a duck, it's not a duck. Ugh.