Hypertonic Saline - There are different percentages of dilution, but the key is just to use the highest salinity that your child can tolerate: the saltier, the better. In 2006 I realized that my lung function had dropped slowly but substantially over the course of years. From my high in college, I'd dropped approximately 50 points! I had to fight to be allowed to try it, but the results were phenomenal! In six month's time I had regained 40 points and no longer struggled to clear the sludge in my lungs. That is what I had noticed the most and sought to remedy. I would cough and cough and cough ‘til I could hardly catch my breath, and my head would hurt, and yet, the mucus deep in my lungs - that I could feel there - wouldn't budge... until Hypertonic Saline. You can buy this prepared in different dilutions or you can make your own at home. I've done both. I still use 7% Hypertonic.
Zantac/Prevacid/Nexium (and the like) - In 1991 I was taking 12 enzymes with every meal and still having tummy troubles all the time. (That was back in the day when they just added more & more enzymes.) Then my GI doc prescribed Zantac (That was the new big thing.), and my tummy got better. After my issues resolved, we were able to bring my enzymes down to only six. Over the years as I've gotten on better PPIs, I've been able to bring down my enzymes even further. I now take Prevacid twice a day and only three Creon 24s with meals.
The Vest (of course) - Before the Vest we had manual percussion. My family never had a percussor, and about high school I quit doing the manual treatments. I was swimming lots and competitively and relied on that exercise (which was excellent airway clearance as well as aerobic exercise) solely all through college. I got the Vest in the Summer before I got married. If you have one, you know how wonderful the Hill-Rom Vest people are at making sure you get a Vest no matter what your financial situation is. I have used my Vest faithfully for 12 years now. It is great, because now as a mother in a single-car family, getting to a place where I can swim isn't feasible. And in Texas and Alabama, the heat prevents me from outside exercise several months of the year. Though I do (try to) exercise inside, it is never a replacement for the Vest.
Nutrition - I know that CF clinics talk a lot about calories and fat and vitamins and sodium, and those are good things, but there is a lot more to nutrition than just that. Educating myself has helped me great deal. (I did notice at CFIT this year that the approach was more holistic than in the past and was very pleased). I had been taking iron, ADEKS and calcium for years. Then, I began taking Reliv supplements (a whole-food-based supplement) in 2002, just months after my daughter was born. At that time I was really low, drained physically. I noticed an improvement immediately! Since then, I have continued Reliv and added JuicePlus+ (an organic fruit & vegetable supplement) and have continued to notice improvement over time. In addition to these things I have worked with a Naturopath who has helped me through particular issues and crises of health. I have not used these to replace medications like enzymes or aerosols, I have simply added nutrition therapies. I would love to spend more time on this but maybe I'll save that for another post.
Brovana/Forodil - Beginning in about 2009, I had noticed that my albuterol didn't seem to be lasting very long. After a few hours I felt that I needed another aerosol. My lung function was still good and stable, so I didn't know what was going on. During a hospitalization in February 2011, I was put on Brovana in addition to albuterol. What a difference! I felt like my lungs stayed wide open ALL DAY! Once home I switched to Forodil. The usual way of using these is to alternate treatments with the Brovana and albuterol, but I have found that it works best for me (and the MD approved) to use the Forodil immediately before my albuterol treatment. This has brought me a freedom that I've not had for several years of skipping a treatment occasionally. For some time, I just could not skip a nighttime treatment because I would either not sleep for the coughing and shortness of breath, or I would awaken in the night and have to do the albuterol. And I couldn't skip a morning treatment because I would be so tired and short of breath in tasks and coughing constantly. But, now if I come home late or particularly tired, I just do the Forodil aerolizer and go straight to bed. Or if I have to get up and out early, occasionally I will just do the Forodil and go about my day without struggle. Now, this is only an occasional skip. I still have to be diligent to do full treatments (Forodil, albuterol, Pulmozyme, Hypertonic Saline, and Vest) most mornings and evenings. This allows me a greater freedom in my social life, which is wonderful!
Nutramagen - this is the infant formula I was placed on immediately after diagnosis. As a 7-month old, my major symptom was malabsorbtion. The doctors warned that the formula was terrible tasting and I would probably reject it at first, but I didn't. I took the first bottle, sucked it down, and smiled at it. Problem solved! I quickly began gaining weight and thriving. Of course, that was 1979 and now they have, not only the formula, but enzymes for infants so that they can drink breastmilk or other formulas.
Probiotics - I'm not just talking about acidophilus, though that is certainly better than nothing at all. I'm talking about multiple strains of beneficial bacteria in massive quantities. I like Nature's Sunshine Probiotic 11 and Solaray Multidophilus 12. Over the years antibiotics have become harder and harder on my body, and, if I don't take probiotics with and after my antibiotic rounds, I am miserable. It can take months for my body to recover from the thrush, diarrhea and upset stomach. So while on the antibiotics, I take as much as I can afford, and usually the cheap stuff since I know it's going to get killed off. I also eat live active-culture yogurt by the quart. After I'm off the antibiotics, then I bring in the higher quality stuff and continue eating the yogurt. When things seem to have returned to normal, I scale back to simply taking enteric-coated acidophilus every morning and, usually by this time, I'm sick of yogurt so I take a break.
Neti Pot - I began using a Neti Pot to rinse my sinuses about 5 years ago. After years of chronic infection, inflammation and headaches, I finally broke the cycle. My sinuses took a while to become clear and during this time I rinsed my sinuses (from the left AND right) twice a day. After they became clear, I rinsed only one way once a day and now I only rinse when things become congested. I very rarely have sinus infections now and most days are headache-free. On the rare occassion that I do get an infection, I have been able to treat it at home without antibiotics and have not needed a surgery since using the Neti Pot.
I hope you find this helpful. And, if you find something you're thinking about trying, keep in mind that your doctor may be resistant. Don't just avoid telling him/her. Do your research, think it all through carefully. As I mentioned, I've had to fight sometimes to be allowed to try things that, ultimately, have had a positive impact on my life and health. So, just because you have to be persistent doesn't mean you shouldn't try it!
