THE TRYING, I MEAN ADOLESCENT, YEARS

Welcome back!

My oldest son is about to turn 12, and I am getting a first taste of what is to come.  This will require fortitude….and the ability to dance.  No, I don’t mean really “dance,” I mean mentally and emotionally dance with him, as he comes into his own.  Now, if he had CF and I were trying to get him to exercise as a method of airway clearance and self-esteem enhancement, I would:

1. Not exactly phrase it that way.
2. Make sure it included other peers (unless this causes additional discomfort, embarrassment, etc…).
3. Introduce weight training as soon as he/she is capable of following direction and mature enough to be safe.
4. Strictly enforce the bike/walk/scooter/skate to school, the store, a friend’s house, etc… rule.
5. Hope that he/she liked to play soccer, basketball, baseball, or whatever team sport was available, so that a “coach” ordered the training, and not me.
6. Continue to use enticement, aka bribery, to encourage daily exercise.

Let’s take them one at a time, shall we?

The Wording and the Timing of the Wording
First, the word “exercise” has unfortunately taken on a negative connotation among many of our youth these days.  I don’t quite get it, frankly.  When I was a kid, the trick was in getting me and my friends to come in at night.  Now it is the exact opposite.  I suppose it has something to do with the myriad forms of indoor entertainment these days.  The problem has become that in trying to entice some form of movement away from electronic screens, we (and by we, I mean I) use the words “You need to get some exercise!”  Instant negative reinforcement.  “Exercise” is equated with  the taking away of something good…screentime.

If you are a psychology buff, you know that this negative reinforcement is not going to promote the behavior (exercise) that you want.  A more useful way to reinforce that behavior is to associate something positive with it.  Like Pavlov and the dog! Remember, bell…food.   So yes, get them away from the screen.  By all means.  But don’t repeat my mistake, and use getting exercise as the reason why.  Bad idea.

More on positive reinforcement later.

Make it Social

Though not a universal characteristic of teenagers, most would rather hang out with friends than do pretty much anything else.  If I ask my son to please take the dog for a walk, I get a, “Why….?  I don’t want to….I had gym class today….I’m tired…etc…”  If I instead say, “Will you take the dog over to your friend’s house and see if he’ll walk his dog with you?”, he’s off like a flash.  It’s just (teenage) human nature.  So why fight it?  This is one of those Aikido moments…use the opponents force to get them to do what you want.

When I was a teenager, it was only by starting to hang out with active friends that I discovered my inner athlete.  My parents didn’t really encourage it….it just happened.  I still wonder what would have happened had I stayed in my shell.

Weight Training

It is an old wives’ tale that teenagers shouldn’t lift weights until they are fully grown for fear of damage to the epiphyseal plates.  The truth is that as soon as a kid is mature enough to follow instructions and be safe in a gym with a trainer, it is perfectly fine to start weight training.

And the teenage years are the best for starting this habit early on.  Why?  For one thing, body image issues become overwhelming at this age, as we all can remember.  Now imagine going through that again, but this time with CF.  As a teen with CF, you deal with growth delay, puberty delay, an “unpredictable” body when it comes to lung function and GI function.  Your friends see you take a handful of pills and wonder what is wrong with you.  You spend inordinate amounts of time in bathrooms, your fingernails look weird…you get the picture.

Wouldn’t it be nice to be able to do something that had a visible, positive effect on your body that CF didn’t really effect?

The answer is unquestionably, yes!  It had a profound effect on me, and I have spoken with many other adults who say the same thing.  This is an issue where a child can actually have an “internal locus of control.”  They can get stronger!  They can put on muscle!  They can start winning arm wrestiing matches!  And CF can’t touch this.

Make Use of Multitasking

We are all pretty good at multitasking, so this one should be a no-brainer.  We all have to go places…even our children.  School, friends’ houses, the store, downtown, ball games, church….whatever.  We travel.  It is easy (I know) to get locked into a pattern of driving to all of these places.  Certainly, when the weather is bad, we need to do this.  But how many times could we just say, “I’m not driving you today.  I’ll walk or ride bikes with you…but we are going to get there the low tech way today….just for fun.”

Just as it is with small kids, it is not necessary to get all of ones aerobic exercise for the day done in one session.  It works just as well to break it into two or three smaller chunks.  So that 15 minute bike ride (each way) to school, if done intensely, could be just what the doctor (or coach) ordered for the daily goal.

Defer to the Coach

This trick works if you son or daughter is on a sport team, and practices with the team.  Then your job is easy…the coach makes your kid work, and you are off the hook.  If this describes your situation, count your lucky stars.

Not all kids are “team” types, of course.  So then what do you do?  Well, here is my pitch for wellness coaching.  If your child is mature and appreciates the need to  establish an exercise habit, working with a wellness coach is a great idea.  There are a couple of caveats, though.  First, if your child is not into the idea and only you are…it doesn’t work.  Behavior change is tricky business, and one thing is for sure, the changee has to want to do the hard work of changing.  The coach doesn’t do it….the parent doesn’t do it.  Second, I’ve learned through doing this that until a child is in their teens, it is best to scheule “family coaching” sessions.  Taking on a new habit is a big job, and a child needs support from not just a coach, but also from their family members.  Everyone in the familly needs to understand the plan, and be ready with support and encouragement.

Bribery

Now, we could call this something else I suppose.  But the truth is that is isn’t such a bad thing for a kid to understand the concept of quid pro quo.  Just as I said this works for younger aged children (remember pedometer steps for video time, stickers for exercise), when kids become teens, the concept still works; the stakes just get to be a bit higher.  Now we may be talking going to the movies, getting the car keys, going out with friends…you name it.

When you start feeling guilty about this, remember that the ultimate goal is for your chilld to learn for themselves during this time that they actually feel better when they exercise, and will hopefully find some activities that they love to do, and will keep loving to do into adulthood.  This is a critical time..and it calls for some …unorthodox methods.

If you have great ideas that have worked for you in encouraging your teenager with CF to exercise, please share them here.

Exercise for Preschoolers and Elementary School Children With CF

FIRST, THE FACTS

First of all, if there is ever an easier time to get kids to move…this is it. Just as before, encourage the notion that exercise is fun.  Being active is fun.  Playing with your family and friends outdoors (or indoors)  vigorously is fun!  The neural pathways you help your child establish now will be with them into adulthood.  They can be health promoting pathways, making an active lifestyle easy to maintain…or , they can be sedentary living pathways, which will be difficult to overcome.  Your power to promote long lasting behaviors at this stage is enormous.

While the target goal is to have your child accumulate at least 30 minutes of moderate to vigorous activity each day, remember that this does not have to happen in one session.  In fact, kids are wired to be active in short bursts, so go with that, and break up activity sessions into 5-10 minute chunks.  Go out and play hide and seek with them…or tag…or whatever makes their (and your) hearts pump and lungs work hard.  The “active time” can include swimming, soccer, basketball, biking, jumping rope, rollerblading, running/walking, jumping on a pogo stick (one of my favorites), or rebounder, or safely enclosed trampoline.  Really, you are limited only by your and your child’s imaginations.

Preschool and elementary school aged children can also build strength.  They aren’t ready to pump iron at the gym with you, but with a little creativity, you can help them strengthen their back extensors and other core musculature.  In a soon to be revealed video, I will demonstrate some easy ways to do this.

Habits are being formed now, as I said before, and this also applies to posture.   Why is posture so important to think about in cystic fibrosis?  Several reasons come to mind.  One, optimizing posture optimizes usable lung tissue.  Think about what ends up happening as we age (unless we work hard to avoid it).  Our upper backs tend to bend forward, as our shoulders roll forward from years of typing, driving, working at a bench, or whatever.  At the same time, our lower backs tend to become more “swaybacked” as the pelvis rolls  anteriorly from years of sitting and subsequent tightening and shortening of hip flexors.  The result is that the upper areas of our lungs get, to use a technical term, scrunched, and we get chronic low back pain.  Both of these are bad.  Compressed lung tissue is bad in CF, because compressed  tissue collapses and, 1) isn’t used to exchange gases and, 2) is a set up for mucus plugging and infection.  Back pain is bad in CF for the same reasons it is bad in anyone…it hurts and leads to inactivity.   It is also bad because with low back pain and weakness comes abdominal muscle weakness, and inefficient and weak cough mechanics.

So you are probably wondering how to avoid all of this.  Start strengthing back extensor muscles early, as well as all of the core muscles that surround the trunk!  I have come up with several examples of these in the aforementioned video (coming to your computer screen soon).  Many of these are exercises that adults do, but have been slightly modified and given cute names.

HOW DO I CONVINCE THE LITTLE BUGGER

Finally, a word about motivation during these fun, but sometimes difficult years.  Let’s be clear here…sometimes it’s more about motivating yourself to be consistent and unwavering about establishing exercise as a  “family value” more than it is about motivating your child to do it.  Parenting is hard (tell me about it) and can be draining.  Convincing a young child to do what you want can be like herding cats.  Sometimes “motivating” them really means “bribing” them.  Clearly, you have to pick your battles, and exercise may not be the most important thing to focus on every time.  The point is, at this age, you are aiming a moving target.  Just because a trick works one day doesn’t mean it will work the next.  You need to have a Plan B and C ready.

COMMON TRICKS, I MEAN STATEGIES

Enticement is a wonderful tool. Giving a  “reward” for doing their exercise can be extremely effective.  Pre-school kids will do the most amazing things for a sticker or a small bouncy ball.  A 5, 6 or 7 year old can be told to get 5000 steps on their pedometer (that you gave them as a reward for exercising) before they get to watch their favorite cartoon.  (I discovered the hard way that after this age, the kids quickly learn to just shake the pedometer when you aren’t looking).  An older 4th or 5th grader may gladly do their exercise if they are told that there will be no screen time until they do.

Calling exercise by a different name is sometimes effective.  Personally, I think it is a lovely word, but many people hate exercise and like to say so.  Kids overhear this and can easily associate “exercise” with pain and discomfort.  So, “Let’s go play on the trampoline!” sounds better than, “Go exercise on your trampoline.”  “Let’s pretend you are a wheelbarrow!” sounds fun!  “Let’s make your muscles stronger!” sounds like work.  “Let’s make an obstacle course!” sounds  much more exciting than “Let’s do interval training!”

Competition works well for some kids and completely turns off others.  One of my kids hates it and refuses to play.  The other will do anything if I tell him I’m going to time him.  You know your own child and if this will work.  If it does, you can have races or see who can jump the farthest or the most without missing (jumping rope).

Finally, video games that encourage movement are available and fun!  The Wii has several active games,  both the games that come with the Wii as well as Wii Fit and others that really get you moving!  Dance, Dance Revolution is another great example of this and more are being created every day.  Video games are here to stay.  I think of this with the Aikido mentality of “using the opponent’s force to get what you want.”  If you can, get a Wii or other console system, and allow the games that encourage movement.  Play them with your kid!  Not as a substitute for other exercise, but as a complement.  After all, they are fun!

Creative Ways to Make Exercise Fun For Your Child

In the last post, I described in exhausting detail why you want your child with cystic fibrosis to exercise every day (unless they are sick, of course).
In this article, I will outline some specific tips about age appropriate activities that are both fun and healthy for your child as he or she grows through the baby/toddler years.   The next post in the series will so the same for preschool and elementary school aged children.  Next, I will deal separately with the teenage through transition stage.

Focus On Play With Your Baby and Toddler

Just look at the face of this child!  Does she look happy or what?  The first couple years of life should be fun, fun, fun when it comes to exercise.  The best breathing exercise I can imagine is that of a baby laughing uncontrollably!  It’s exercise!  Really.  If you don’t think I’m right, watch this video (heck, watch it anyway…it’ll make you smile).

Stability Ball Games

I am a big fan of stability balls like the one shown at the top of this post.  They are great tools to use for home exercise.  They only cost around $20 or so, and can replace a bench as well as serve as a prop in many, many core strengthening exercises.  Not only that, but imaginative kids can come up with all kinds of games to play with these things. Take it from me, who has had to replace her “this-is-mine-you-are-not-to-use-it- for-any-reason” ball at least five times due to poppage or fly over the fence-age.

For a baby or toddler, I highly recommend holding him or her as you bounce gently on the ball, making sure it is fun and not frightening.  Hint:  Get the “burst proof” variety when you buy a ball.  It’s a bit more expensive, but worth it unless you want to pay for years of therapy.  You can also do it like the father in the above picture (if you have a good grip).  When I saw this picture, I immediately thought, “Wow, what a great opportunity for some light chest compressions if this kid had CF.”  Yes, I am a bit twisted.

Another way to do this same thing without hands on assistance is to put your baby in a doorway jumper and watch them go as you cook dinner.  Now if they could rig up a teenie little Vest to put on Baby while in this thing….

Strengthen That Little Core

There is not a more overused word in the fitness industry than “core.”  Well…maybe “dude.”  The core includes all of the muscles that stabilize the spine and move the hips.  If you understand anatomy, you know that this includes a lot of muscles…not just the abdominal muscles that create your six-pack abs.  The core includes all of the para-spinal muscles of the back, all of the abdominal wall muscles, the pelvic floor muscles and the hip flexors (psoas and quadriceps) and extensors (gluteals and hamstrings).  So, really, the core includes a large percentage of the body’s musculature.

Why does your little tyke need a strong core?  First, we all do.  But in addition, it is important to have a strong core when you are gearing up for a life of coughing. Ok, that sounded pessimistic.  I don’t mean it that way.  But while we are waiting for the ultimate CF cure, there is a good chance your child will cough more than the average kid.  Over time (believe me) this takes a toll on the back, the pelvic floor, and the chest wall.  Starting your child off in life by strengthening this area is a wise move.

Now is not the time to encourage sit ups, though.  You encourage back extensor (those spine stablizers) muscles to work by putting your child on his or her tummy.  Babies naturally arch up to look around…they do the baby version of locust pose in hatha yoga.  They know what to do.  So tummy time is important for your baby.  Just remember to keep in mind that if there are any issues with reflux, it is best to wait a couple of hours after a feeding.

Speaking of yoga, it is never too early to start working on chest wall flexibility.  When your child is slightly older, old enough to watch you and copy you, or watch a video, there are some great yoga for kids products out there.  The poses have fun names, usually based on animals, and are fun to do with them.  Itsy Bitsy Yoga for Toddlers and Preschoolers by Helen Garabedian and Little Yoga: A Toddler’s First Book of Yoga by Rebecca Whitford tare both geared for toddlers.

The most important thing to do with your child at this age is to help them associate exercise with fun and bonding with you.  The earlier these neual pathways are established, the better.  When pre-school and elementary years come, this continues to be the most important thing.  But more on that next time.

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.