Hi Nora,
You seem happy with the treatment plan, so I don't know if I am out of line with giving my opinion. But your story is so similar to what happened to me that I scream at my computer when the doctors say that someone doesn't have asthma (based on what) so that they do not advise patients to change their lifesyles. Which really could change everything! Instead they talk transplant. I have had doctors tell me that I didn't have asthma either or that it wasn't important. And I just got worse and worse. I heard "Transplant' also. I was so lucky to find a doctor who looked at the asthma component that most CFer's do have -- due to hyperactive airways.
A word about testing for asthma. Some people think asthma is wheezing. Some people exhibit absolutely NO SYMPTOMS. But it is there making them sick. First, I don't know if your daughter was even tested for asthma or allergies, or had an Ige blood test which holds so many clues.
Someone can take PFT's-- even with before and after bronchodialtors -- and asthma may not show up because the tests are done in pristine labs, not in your house with carpets, and pets, or any other irritants that can bring on bronchoconstriction. In other words, when people have asthma, it may not be acting up when they test for it. Some doctors will even give a drug to see if there is an asthmatic response (this is extremely dangerous).
If you are satisfied with the treatment plan, I apologize to you for any suggestions that run counter to your beliefs. However my question is -- if your daughter does NOT have asthma, why are they treating her with asthma medicine? Albuterol and specifically Symbicort which according to the the Symbicort website "is an asthma-controller medicine. It works in two ways to control your asthma throughout the day and night."
From their site:
1.By reducing inflamation in your lungs
2. By keeping airways open
When my lung function was lower than your daughters, and I was being hospitalized more frequently, and I was becoming resistant to all antibiotics, my mother suggested I try another doctor -- which I was very resistant to. My doctor was a great guy -- very caring. But my mother said that my doctor just waited for me to get sick, then would put me on antibiotics all the time.
Shortly after, I happen to see a newspaper listing of a talk that a doctor was giving at a nearby hospital: "Are you on antibiotics all the time? It could be inflamation." And truly after seeing that lecture and eventually that doctor -- the course of my illness changed by not only by taking the correct medications -- and learning to practice what she calls taking protective measures...including making your environment free from allergens and irritants.
I implore you not to go back to that doctor. See if you can find somebody with your up, positive attitude who also knows something about CF, allergies, chemical sensitivities, and the asthma component.
Finding out that one has asthma is actually a good thing. It is treatable and leads to less infections. It is the one thing that you can actually take control of.
I have talked about these things in other posts and if you are interested I will refer you to more information. I hope that I haven't offended you in any way.
I wish Katlynn and you all the best.
By the way, you can buy your own peak flow meter and have her blow into when no one is around if you feel her shyness is holding her back from getting an accurate number. But make sure the meter is for kids--it's about $11.00.
