First: Debi (Aspiemom): I was really glad to hear that you had a similar experience that I had with doctors' ignorance when it comes to the asthma component or the effect of allergens and irritants have on CF. And I think it's great that you are able to give a first-hand referral to Nora for a clinic that is near where she lives.
Doctors are woefully uninformed in this area and until medical schools change their approach to CF, everyone will continue to be over- treated with antibiotics until the patient is resistant to everything. This is my one frustration every time I come to this site. I feel so sad because I know there is a better way. But patients only know what their doctors tell them. I was in that traditional medical system and they were killing me. I was told that I would just get gradually worse. After finding my new doctor, I went back to my old doctor who knew my new one (they both taught at the same medical university). He thought everything she was doing for me was stupid. I asked him why he hadn't checked my sinuses which were 100% blocked on one side. He conceded that he missed that. He told me asthma was not my problem. Under his care my lung function went straight down. Under her care, my lung function when straight up. I never went back to him.
Nora,
I don't want to overwhelm you. So I'm going to give you a few suggestions to start with. I'd like you to read a post I wrote in the Adult section, page 3, under the thread: Proactive Tuneups. I wrote 2 posts, the second one is more specific about what you can start to do. There will be things like buying an air filter, a HEPA charcoal Vacuum cleaner, encasing your daughter's pillowcase and mattress with allergy protectors, if possible removing carpet (this is huge), put a chlorine filter on your shower head, have her wear a mask in very cold weather (airways constrict)...so many things...
Next, if your CF center doesn't want to deal with allergies, see a pulmonary/allergist outside the center. Does she have a post nasal drip? How are her sinuses -- a big source of inflamation/infection. Discharge drips down into the lungs especially when sleeping. Does she do sinus rinses or need nasal sprays? Ask about Claritin (costco sells it OTC under Allerclear) I don't know if it's appropriate for kids. I take it everyday.
Look at a site called the Canada Mortgage and Finance, under search enter: Fighting asthma in the Home. This was a site that I came across that has a really good check list.
Google: Peak Flow Meters -- click on the first listing which is The American Lung Association. It will tell you everything you need to know about Peak Flow measuring. It said that older children can use a regular Peak Flow. If you want to buy one, I found a website: JRS Medical. The product is Personal Best peak flow meter for $18.24. You might find one cheaper or get it from your clinic.
I have been going to my doctor for 11 years and I've learned so much from her. It will take time for you to learn about all the things that can help your daughter. I will give your the advice my doctor gave to me: The more you do, the more results you will see.
By the way it amazes me that when you asked to investigate allergies, a doctor would say, "I believe it's all CF." Your hunches are valid. The doctor's narrowmindedness is just sad, not to mention potentially harmful.
Feel free to ask me anything.
