How to Shake Up Your CF Kid’s Exercise

Ok, first of all, I want to say that I don’t normally use the phrase “CF kid.”  Your child is not a “CF kid,” nor am I a “CF adult.”  I am an adult.  CF is one of my challenges…as is coming up with good titles for blog posts. It just didn’t sound right to say “How to shake up your child who deals with CF’s exercise program.”

That said, the purpose of this blog is to talk about living well with chronic illness, and of course, CF is the illness I know the most about.  Self care obviously contributes to wellness with regard to any illness.  But in CF, self care goes to new levels…new extremes.  It may seem to someone who has CF, or to a parent of a child with CF, that to be fully compliant with your doctor would take most of your waking hours.

It’s true…and  this is in part why I stopped working in the real world.  The wasn’t enough time!

So when you hear about the need to add daily exercise to a very long and complex regimen, it stands to reason that the first thought is, “Oh yeah…right…I have time for that!”

However, exercise and it’s importance to health with this disease is so important that I feel an entire series of articles is warranted.  I think that the best way to spread the word is to target first the parents of children with CF, because the earlier an exercise routine is established, the better.  My goals for this series are to first present the reasons WHY exercise is important and why it needs to be established early in life.  Then I will talk about different ways to encourage exercise as your child grows through different stages of both physical and emotional development.  Then I will cover how motivation changes as a child grows older, and how to optimize the methods you use to encourage exercise as motivations change.  Finally, I will discuss the challenges that seem to cloud the way and how they change as a kid moves from toddlerhood to transition to college. Hopefully, I will then present some ideas to work around these obstacles.

Why Should Your Child Start Exercising Today

I have written about the benefits of exercise before, but I don’t mind doing it again.  It is very clear that fitness levels correlate with survival in cystic fibrosis.  This was first shown in 1992 by Drs. Nixon and Orenstein (Nixon PA, et al.  N Engl J Med 1992;327:1785‐8).    No proof of a causal relationship was evident then, but the correlation was intriguing.  Since then, it has been shown that maximal exercise capacity correlates with survival, just as FEV1 does.  In fact, in Europe, routine exercise studies are done in addition to  pulmonary function testing to follow the course of the disease.
It makes sense, really.  Look at the “CFTR-able” population.  Fitness correlates with survival because it lowers the risk of so many health hazards (diabetes, obesity, hypertension, hypercholesterolemia, and several cancers, to name a few).  It also enhances immunity and acts as a buffer to the ill effects of chronic stress.  We don’t know the exact reasons why it helps in CF, but we have some eduacated guesses.

For one thing, and a very important thing at that, exercise promotes weight gain in children with CF.  We are a weird group indeed.  For most of the world, exercise is prescribed to help lose weight.  We even have reality shows based on this concept (The Biggest Loser). But for children with CF, exercise increases the appetite, and as long as good, high energy density food is around, weight is put on!  As I’m sure any parent of a child with CF knows, lung function shows a strong correlation with weight and BMI.  Lungs just work better when kids are closer to their ideal BMI.  Exercise is one tool to use to get them there.

Exercise also is an excellent form of airway clearance.  In fact, we know that exercise combined with a standard method of airway clearance such as the Vest, flutter, or chest PT is better than either one alone.  Is the Vest good?  Yes.  Is it better to do both the Vest and exercise?  Yes.  Can I do just one method?  Not if you want optimal clearance of mucus.

It is even starting to be more clear why exercise helps with mucus clearance.  At the most recent NACFC, I heard a talk given by Stephanie Dwyer from Australia, who has shown in an elegantly designed study that exercise decreases viscoelasticity (stickiness) of CF sputum.  In addition,  her subjects described a subjective improvement in ease of expectoration (coughing up) sputum following 20 minutes of exercise biking.  This is likely due to both decreased “stickiness” as well as increased air flow rates through the lungs.

Dwyer offered as explanation an interesting study done in 2001 (Hebestreit) which suggested that exercise partially inhibited the excess sodium absorption through the ENAC channel, which lead to more water present in the airways following exercise.  Remember, in CF there is both hyposecretion of chloride and hyperabsorption of sodium, a double whammy leading to very dehydrated conditions in the airways, as water follows salt concentration through passive secretion.  No (or little) sodium and chloride in the lumen of an airway….no water secretion….leading to very little airway surface liquid and sticky sputum.

Another reason to exercise early in life (and keep it up) is that exercise leads to better self-esteem and an overall sense of well-being.  As kids with CF enter adolescence, body consciousness becomes a huge issue.  Think back to your teenage years as a “normal” kid who didn’t really have much to deal with other than raging hormones and acne.  Add to it digestive issues, delayed puberty, a weird sounding cough, having to take fists full of pills, needing to go home early to do treatments, strange looking fingernails and, missing a lot of school, and did I mention the digestive issues?
Clearly, if there is anyway to improve on body image and self-esteem, all efforts should be made to incorporate it into the life of a child with CF.  I say start early, because if a pattern has already developed by the adolescent years, they will be ahead of the game when *%&# hits the fan.

Another issue that can to rear it’s ugly head in adolescence is depression.  Kids with CF are not necessarily at an increased risk for this until the teenage years, when body image issues come up as well as questions arise about the future.  The full implications of their disease may not be apparent to them until this time, when they are old enough to read for themselves about CF and what comes with it in adulthood.

Luckily, we have a tool to fight depression that is completely safe, and has been described by Dr. John Ratey in his book, “Spark:  The Revolutionary New Science of Exercise and the Brain,” as like taking just the right dose of ritalin and prozac…without any medications.  And it’s free.  It turns out that exercise has a profound impact on neurochemical changes in the brain.  It can help with not just depression (in many cases as well as an SSRI without the side effects), but also anxiety and with the ill effects of chronic stress.  But wait….there’s more!  It also helps your child learn and improves memory!  I highly recomment Spark to all my clients….and to you, too.  It will not just motivate you to add exercise to your child’s routine, but to yours as well!

In the next post, I will discuss different ways to encourage your child to exercise as they move from toddlers to pre-adolescence, to teenage years and beyond.

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