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Fitting CAYSTON® Into Your Child’s Day | My Cayston Community™
Raising children with cystic fibrosis (CF) to be independent, hopeful, and as healthy as possible is no small feat. The good news is that CF care has come a long way in the last fifteen years. New medications and therapies have contributed to improvements in health status for patients.
The bad news is that all of these therapies can be quite a burden to get done "as prescribed." Having to take two or three nebulized medications per day is not unusual for most people with CF, which takes time, energy, and organization. Balancing the demands of family life, including siblings, with the needs of the child with CF is a struggle for most parents.
New therapies and faster delivery methods are helping to make this balance easier to attain. I first heard about CAYSTON and the novel ALTERA® Nebulizer System at a CF conference. The new (at the time) ALTERA nebulizer technology, with its fast 2- to 3-minute estimated treatment time (not including cleaning and disinfecting) and battery power, was exciting.
At the time, my son Jacob and I were getting up extra early in the morning and staying up later at night to fit in all of his nebulized treatments. It was especially hard when he was on the go—at sporting events late at night or on overnights for Cub Scouts and Boy Scouts in rustic settings.
We gave our kids lots of choices—never “if” they would do their treatments, but lots of flexibility around “when, where, and how.”
When CAYSTON became available, I asked Jacob's doctor about it. We discussed the options and pros and cons from a medical standpoint, and we decided to give it a try.
The fast delivery time and portability were wonderful for Jacob and made it easy for us to use. And, having multiple handsets was helpful because we could batch disinfect all at once at the end of the day.
We figured out that if he did his morning dose right before he left for school, he could do the afternoon dose as soon as he got home and fit in his third dose right before bed. We also developed a plan for fitting in the second dose when he was doing extracurricular activities right after school. Since I had to pick up my daughter from school anyway, I would pick up both kids in the carpool lane and have Jake do his CAYSTON in the car before he would run off to sports practice or whatever he was doing at the time.
There were also times where he would need to bring his medications to school with him and put them in the nurse's office for safekeeping. He would pop in there to do his medications and pack up the pieces to be disinfected at home. While fitting in all three doses can be a bit challenging to deal with at times, the short nebulization time and portability made up for it.
We were especially thrilled with the ease of use on a family trip to Walt Disney World during a day spent at a water park. I'll never forget the sight of Jacob nebulizing CAYSTON while sitting on a bench in a locker room, where we had stored the medication. He was soaking wet, had swim goggles stuck to his forehead, and mist rising around him. Of course, he was off and running back to the waterslides as soon as he finished a few minutes later and left mom to clean up. I quickly cleaned the nebulizer parts, locked everything back up, and was back in the water myself minutes later! The amount of time it took to complete a treatment and clean up was a small price to pay to be adherent.
We raised our kids to make good choices about their medical care. We emphasized the importance of good adherence and not making CF care the focal point of their lives—kind of like brushing teeth. It's a job that just needs to get done so that we can do the things we enjoy. We've tried to have a good balance by being creative and flexible throughout the ages and stages of their development.
We gave our kids lots of choices—never “if” they would do their treatments, but lots of flexibility around “when, where, and how.” This is the example that we provided through years of balancing CF care while enjoying life. And so far, as teenagers and young adults, they have continued to follow that lead. They have also learned, by our example, how to speak up for themselves, be curious about CF care options, and enjoy all that life has to offer!