Spring is the season for renewal and a great time for healthy beginnings! Join us and learn about the best, complementary practices to help your child develop healthy, active habits that he or she can benefit from for a lifetime.


Transcription of "Maintaining an Active and Healthy Lifestyle"

ANNETTE GOSLIN (Moderator): Good evening, and welcome to Maintaining an Active and Healthy Lifestyle, part of the National Hemophilia Foundation’s Hemophilia Web Series.  This series is supported by an educational grant from Novo Nordisk.  Our presenters this evening are Jen Maahs and Kim Baumann. 

Jen is a pediatric nurse practitioner at the Indiana Hemophilia and Thrombosis Center in Indianapolis, Indiana.  She has served as nursing liaison to NHS’s medical and scientific advisory council.  And as chair of the organization’s Nursing Working Group, Jen was named NHS Nurse of the Year in 2003.

Kim is a physical therapist with the Center for Bleeding and Clotting disorders at the University of Minnesota in Minneapolis.  She has served as NHS Annual Meeting and Physical Therapy Working Groups.  Kim was named NHS Physical Therapist of the Year in 2005.

Welcome, Jen and Kim. 

Our program will conclude with a question and answer segment.  To ask a question please go to the area in the far lower left of your webinar screen and type your question in the field just to the left of the Send button, which is located in the Pod or area labeled Chat.  Click the Send button when you have finished typing your question.  However, please note that your question will be addressed during the question and answer session at the end of the presentation. 

There are no handouts for this presentation.  However, a recording of this webinar will be available shortly on the National Hemophilia Foundation at www.hemophilia.org.

And now I’ll turn things over to Jen.

JENNIFER MAAHS:  Thank you.  And welcome, everyone, to our conference on maintaining an Active and Healthy Lifestyle.  And what a great time to start thinking about it as the weather is changing.  I’m in the north and people are finally getting out of their house and thinking about being active again. 

As we talk about becoming healthy, we’re going to start with the definition of self-care.  What is self-care?  And by self-care it could be taking care of yourself, or taking care of your family, and it’s really a personal choice in health maintenance.  And it varies from person to person, depending on what is important to you and your family.  Self-care skills are a subset of life skills, and they’re really an extent to which you, your family and community engages in activities that improve health, prevent disease, help better manage your condition and if you’re having problems hopefully then it helps restore health. 

When we talk about how we support self-care, there are different ways to do it.  The first bullet is really obtaining personalized information.  So, what makes you or your child different from anyone else?  What works better for you that may not work for someone else?  So, this personalization of health care is really the trend that we’re going to, and it’s the personalization of lifestyle and fitness.  Having monitoring devices—I think a lot of us have pedometers.  We see how far we walk.  It helps motivate us.  It makes us think about, “I need to walk a few more steps today.”  We may have heart rate monitors.  But there are different things that really give us a better idea of the interventions that we’re doing and how that is helping us. 

Seeking advice.  That could be from someone face to face.  It could be on Google.  It could be reading brochures and books.  There are a lot of ways to get advice on how to maintain a healthy lifestyle.  I think the biggest challenge is just figuring out what is sound advice and what is just something that you have read on the Internet.  For example, my mom one time read an article where she thought chocolate was supposed to make you live longer.  It sounds good to her.  She likes chocolate, but maybe that’s not really scientifically based. 

Having support networks.  So, as you go towards a healthy lifestyle, are you interacting with people who have the same interests and who help motivate you to continue that?  So, having those support networks is a very good way to keep that going.  And that’s what we’re doing today with this webinar series and NHF is promoting how to have a healthy life.

If we go back to just looking at general health care, what can you do to take care of yourself?  Scheduling a yearly physical with your primary care doctor.  At that time you can really sit down and you can talk about the risk factors in your personal health and your family health history.  It can really allow your physician to get to know you and to really have a targeted approach for you.  So, going back to the personalized advice, what is pertinent to you and to your family based on your history? 

Performing a focused exam and some screening tests.  We’re going to talk about a few screening tests and using this and pulling it all together to encourage people to really know how to take care of their health and feel better. 

When we talk about the importance of this yearly exam, I think it’s kind of hard, because sometimes when you think about how do you decide if somebody looks healthy or is doing well, sometimes it boils down to, do they have a healthy appetite?  Do they look like they’re healthy?  Can they do the things that they need to do on a daily basis like go to work and go to school?  Sometimes that’s what people consider as health.  But there are some screening things, especially when we look at the pediatric population, that we want to do and it seems to get, as we understand more and more about early onset of diseases, some of these screenings become at younger and younger ages.

When we look at screening based on age and risk factors—we’re just going to go through some of the basic screening.  If you look at a child, starting blood pressure screenings at age three.  There is another screening they like to do early, especially if you live in a high-risk area, and that’s looking at a blood lead level.  Why is that?  Because if you live in an older home—lead-based paints were used until 1978, so you might have some paint that is flaking in your house.  It gets on your hands and then it gets in their mouths.  This lead can cause problems later on.

What are some additional screenings?  Hearing and vision screening for children.  This is another thing that happens early and it’s really good to catch these things early.  That is at about three to four years of age. 

As you’re sitting at home and you’re looking at your children, how do you know if they have problems with vision or problems with hearing?  Personally my son started wearing glasses at five years of age.  There were just a few little things that clued us in that he was having trouble with seeing.  You might look at their eyes and they’re just not tracking right.  They’re looking inward.  They’re looking outward.  You may notice that they’re squinting or they’re complaining of headaches, especially after a long day at school.  You may notice that all of sudden they were doing well at school and now they’re not doing as well.  Or they’re really complaining of some obvious things like, “My vision is blurry,” or, “I have double vision.”  The problem is that some of these things, when we look at those early ages, especially under the age of five, it’s hard for them to articulate what some of these warning signs are.  So, just being really savvy at watching your children and knowing what is normal for them. 

Hearing is another thing that we want to monitor, especially when children are younger.  And what might be some warning signs that there’s a problem with hearing?  You may have a slow response to noises or voices.  That may be unusual for this age group.  Now, if you have a teenager that might not be so unusual.  A teenager will really show you that they have a true hearing issue.  In a young child you may have slow language or speech development.  They may talk funny.  Because they’re mimicking back what they hear, if the sound is abnormal coming in, it may be abnormal going out.  The one thing that we’re really seeing to be a common issue is the headphones that kids are wearing.  So, listening to very loud music or just even loud music in headphones really can start to permanently damage children’s hearing, so it’s really important to kind of keep an eye on what they’re listening to and how loud they’re listening to it. 

Our next slide is going to be a question.  These are just questions that we thought were kind of interesting and we want to poll our audience.  This is more from a dietary standpoint.  What is the recommended amount of milk a child should drink per day?  Number one, as much as they want.  It’s good for their bones.  Number two, two 8-ounce cups per day.  Number three, one 8-ounce cups per day.  And, number four, five 8-ounce cups per day.  This is something, as a pediatric nurse practitioner, that I always want to be cautious about.  You’re right, having one to two 8-ounce cups per day is all of the milk that a child needs.  And what we see from young children as they start to eat, sometimes it’s easier for them to just drink milk instead of eating food.  And that can lead to some iron deficiency that we may be checking for, and we’ll talk about that as we go along a little bit. 

Let’s talk a little bit more about screening.  Now, remember, this is not a complete list.  I think these are just some things that rise to the top of the list, but please definitely talk to your primary care physician.  I think when we talk about screening, and we’ll get into some of the ones for bleeding disorders and some of the things that are important, an annual comprehensive visit, which you may be doing at your treatment centers, to talk about your bleeding disorder is really not a substitute for your primary physician, because primary care doctors focus on different things—a lot of the screening that I’m talking about, and we will want to watch that. 

Let’s talk about some of the laboratory screening that they may do.  Anemia.  When we look at kids we want to make sure that their blood level is high enough, because it’s our red blood cells that really take oxygen to our head and our body.  Usually we test for anemia around the first birthday.  Some kids become anemic because of drinking too much milk, and that’s why I highlighted that question, and not eating enough solid foods. 

The other thing that we’re starting to look at earlier and earlier for children is their cholesterol level.  We may start screening two years or older, especially if they have the family history of high cholesterol, or if they have parents or grandparents that developed heart disease before the age of 55, or if they’re obese and they have high blood pressure. 

The tuberculosis skin test is another thing we’re doing.  We may do it at an early age for those people who are at high risk, so if they live in an area where tuberculosis is common.  Some of those specific ones are Native American reservations, if there’s a homeless shelter, or they’re in an institution, or they have recently moved from Asia, Africa, Central America, South America, the Caribbean, or the Pacific Islands.  Those are all areas that are very high risk for tuberculosis, so screening for that is definitely a must.

The next slide we’re going to look at is talking a little bit about hemophilia self-care.  We have talked about vision.  We have talked about the labs that they may draw.  We have talked about hearing.  Now we’re going to talk about some things that are part of self-care that are added onto all of that with hemophilia.

Our first one is self- infusion.  What is being able to self-infuse?  If your child is young it may not be them infusing themselves, but it may be you infusing them.  Why do we want that for our patients?  It allows for prompt treatment of bleeding episodes when they occur.  The sooner you treat, the less blood that is in your joint and the quicker your recovery is going to be.  It may allow you to treat prophylactically so that you can then do the things that you want to do.  We also look at dental care.  It’s pretty important.  And I know you think, “How much blood is in your teeth?”  Dental procedures, like teeth that need to be pulled, any time they numb your cheek, that’s called a block.  Infusion therapy is needed before that to avoid bleeding.  We will also talk about maintaining good nutrition, because that then leads to a healthy weight, which puts less stress on your joints.  In addition, when we talk about dosing of factor concentrate that is weight based.  So, if you’re more at your ideal body weight, you may use fewer units per year than if you were overweight.

So, going back to talk about self-infusion and home infusion, because I think this is the number-one thing that really allows you to take control of your care for hemophilia, and it really reduces your reliance on others for your care.  For example, if you know how to infuse yourself or your child, you’re not going to need to go to the emergency room for a bleeding episode and try to convince them that you need to be infused.  You’re going to know what to do and you’re going to be able to do it quickly.  It also allows you to fit treatment into your lifestyle.  So, if you’re traveling you don’t have to worry about where the local emergency rooms are where I’m going just in case I have a bleeding episode.  Or it allows for better coverage during active times.  Let’s say you have a weekend where you’re going to be very busy and you can infuse ahead of time to help protect you so you don’t bleed during that activity. 

I think it’s always hard, especially for young parents, to know when to start and when do you start teaching your kids to take on this responsibility.    What we recommend is as early as the child is ready and starting with really small tasks.  If you have a child who is three or four, there is no reason that they can’t be setting up the supplies.  You can start teaching them to mix factor and making small steps that gets them a little more independence and gives them control over their infusion process. 

One of the things that helps keep you on track is to set yearly goals just to help you stay there.  “So, this year we’re going to learn how to mix your factor.  Next year we’re going to learn how to find a vein.  And next year we’re going to learn how to do this,” and really progress through that way.

Positive talk is another thing that’s important.  Learning to infuse yourself is just really taking control of your life.  Some of the things that you can say to your children are, “One day you will be able to infuse like the big kids.”  What little kid doesn’t want to grow up and be cool like the big kids?  It’s a sign that you’re growing up, because we’re giving you more responsibility by allowing you to do that.  As they get older talk to them about the advantages of self-infusion.  “Now you can go spend the weekend with your friends without worrying,” or, “Now you can go on a class trip and mom and dad don’t have to go with you.” 

The big key is never treat infusion as a punishment, because it’s not a punishment.  It’s just something that they need to learn to do.  I think if you have a child who is of age to go to camp or to go to an infusion class, that works wonders.  When we have hemophilia camp we bring in all the kids in, they sit side by side, and even the child that was the most resistant to learning how to infuse, once he sees other people doing it he gets caught up in the whole enthusiasm of it all and becomes much more willing. 

We have another question for you.  We’ll pull up that question.  This question is:  I do not have to worry about my child’s baby teeth since they fall out eventually.  True or false?  Oh, you guys are so smart.  Yes, you’re right.  Baby teeth are very important. 

Let’s go ahead and move to our next slide.  I think when we talk about dental issues and why it’s really important, it’s because your dental health really sets the stage.  So, taking care of your primary teeth—those are your baby teeth.  It helps make speech possible.  It helps provide for good nutrition, because you can eat what you want to eat.  It aids in the normal development of the jaw bone and the facial muscles.  So, they’re really important to help line everything up.  It adds to an attractive appearance, which is never a bad thing.  And it really reserves space for the permanent teeth and helps guide them into position.  As the permanent teeth come through, they’re going to come right behind those baby teeth and they’re going to push them out slowly and it sets them up to where they need to be. 

How do you keep your child in good oral health?  Promoting water and limiting juices.  I want to talk about this too, because sometimes people think that juices are a good thing, because they’re juice and they’re made from fruit, and that’s not necessarily the truth.  But if your child does drink juice, don’t put juice in a sippy cup.  Don’t let kids drink on the juice all day so they have this constant daily wash of sugar in their mouth.  Of course don’t put kids to bed with a bottle.  And really avoid sugary snacks.  One of the things that’s included in those sugary snacks are fruit snacks and raisins.  I know that’s always kind of hard for people to understand, but those fruit snacks just stick.  They’re like glue, so they stick on the back of their teeth and really can cause some dental issues going forward. 

If you have a central line, just remember that you may need antibiotic coverage prior to a dental procedure, because they’re really working in your gums.  You have a lot of bacteria in your mouth and it can get in your bloodstream and sometimes you will get pretreatment before you go there.

This is my slide about sugar content.  I think we all know about the sugar in soda.  We see the Coke here and all the sugar cubes.  I also wanted to highlight that there is a lot of sugar in juices like apple juice and in chocolate milk as well.  They’re a little better than a Coke, but I think if you can start early and encourage your children to drink water.  I would definitely recommend that. 

The next thing that we’re going to talk about is weight management.  One out of three children are obese or overweight and we see it’s close to 20% for every age group.  There are multi factors that cause this.  We have eating behaviors and physical activity behaviors.  How active are they?  And then we have sedentary behaviors.  How much screen time are they doing?  How much are they sitting on the couch?  How much are they not moving?  When we talk about an overweight child and treatment, we need to focus on all three.  Focusing on one thing is not going to work. 

We have another question for you.  You probably will be just as good as you were with the other ones.  I count French fries as a healthy vegetable?  True or false?  Very good.  I didn’t say good vegetable.  I said healthy.  You are correct.  It is a potato, but it is a starch, so it’s not necessarily too healthy for you.

Where to start when you’re talking about weight management?  Pick smart vegetables.  If we looked at the intake of the United States, a third of the total vegetable intake consists of iceberg lettuce, so head lettuce, frozen potatoes, usually French fries and potato chips.  If we look at that, that’s probably not the best choices.  Iceberg lettuce really doesn’t have a lot of calories, but it doesn’t have a lot of nutrition in it either.  Non-starchy vegetables—when we think of starchy vegetables, that’s like potatoes of course, and some corn and peas.  The other ones have that fiber that may help prevent obesity. 

Of course decreasing soft drink intake.  When we look at overweight youths, their soft drink intake is usually greater.  Do not skip breakfast.  Reducing the intake of processed foods.  I know that’s hard, especially when your children are young and you’re a young family.  It’s so much easier to pop something from the freezer into the microwave and be able to feed your family, but really try to reduce that if you can. 

Avoid frequent snacking.  Snacking causes high intake of fat and sugar.  And then eating at home if that’s possible.  Frequent fast food is also associated with hidden calories and obesity.

Bone health is something I want to talk about too, because this is really important, especially in our bleeding disorder community.  If you don’t have good bone density or thickness, we call that osteopenia.  When you have osteopenia you’re more likely to develop significant bone loss if something is not done.  That leads to being more likely to break a bone compared to people with normal, healthy bone density.  And as we’re finding more and more about this in the hemophilia community, we’re finding that people with hemophilia have lower bone density.  We used to think that it’s because maybe you weren’t as active, because they didn’t have prophylaxis twenty years ago, but we’re seeing it’s continuing to be a trend even though kids are on prophylaxis and they’re very active. 

One of the things we’re starting to do at our center is really looking at vitamin D, looking at exercise and looking at calcium.  All those are important in bone health.  For those that we’re really concerned about a bone density test is really something that’s painless and non-invasive. 

I am going to turn this over to Kim and she is going to continue with our presentation.  Thank you.

KIM BAUMANN:  Good evening.  We’re going to start this part with another polling question about physical activity.  Physical activity is only important for kids who want to play sports.  True or false?  Great.  Everyone got that correct.  Physical activity is not just for our kiddos who play sports.  It is important for everybody. 

We’ll start with talking about what is physical activity.  According to the National Heart, Lung and Blood Institute, physical activity is any body movement that works your muscles and requires more energy than resting.  So, walking, running, dancing, swimming, yoga and gardening are a few examples of physical activity.  Exercise is just a more structured form of physical activity.  What is great about this definition is that anybody can do it.  Physical activity is not some extreme crazy thing that people can’t do.  Anybody can do it.  All you have to do is more activity than when you’re resting or possibly more activity than is currently built into your schedule.

Why should we focus on physical activity specifically for our kids?  There are a number of reasons.  There are both general benefits and also benefits specific to kiddos with bleeding disorders.  On the general side, physical activity improves bone and muscle health.  It can help with weight control, as Jen already talked about.  It was one of the three components of weight management.  It can also improve mood and energy levels.  So, you can have better energy levels if we have regular physical activity.  It can also help with sleep.  Our kids nowadays are so over programmed and have a hard time shutting off.  Being physically active can help kids sleep better.  It’s also very important to start young to develop a lifetime habit. 

So, those of us as adults know it can sometimes be a struggle to build that into your schedule.  It’s often the first thing that goes when we feel like we’re too busy.  We’ll skip the physical activity for the day.  But if it’s something that kiddos have been doing since they were very young, it’s just very engrained in their schedule and develops into a lifetime habit.  Being physically active also reduces the risk of many chronic diseases:  heart disease, hypertension, cancer, diabetes.  The list goes on and on.  We all want to do what’s best for our kids, and being able to look back and know that there was something they did as a child that helped them with their health long term. 

And then there are also additional benefits specific to bleeding disorders.  Since we know that blood is damaging to the joints—we know when we have a joint bleed the blood that’s in there is foreign to the joint and it’s damaging to it.  It leaves damage behind.  So, we want to do everything we can to keep those joints healthy. 

The type of cartilage that lines our joints doesn’t have its own blood supply.  The blood supply is where it would get its nutrition and cartilage in the joints doesn’t have its own blood supply, so it relies on the surrounding fluid to give it the needed proteins and sugars for the nutrition of the cartilage.  That’s also how the waste products from cartilage are removed.  These processes occur through what’s called passive diffusion.  It means that the nutrients and the waste products move back and forth across cell membranes.  This is supported by physical activity, including joint movement. 

Think about the cartilage in the joints.  The cartilage lines the end of all of the bones where bones come together.  Our knees, elbows, and all of the joints in our bodies have cartilage.  You think about that cartilage like a sponge.  It needs to be compressed for those waste products to come out of it.  And then that compression needs to be released in order to kind of suck up that nutrition from the surrounding fluid and to facilitate that diffusion process.  If you think about sedentary activity or sitting around not doing anything, nothing is compressing and releasing that cartilage when the joint is not moving.  So, we need to provide that necessary compression and release to keep our joints healthy.

We also know that well-supported joints help us tolerate normal everyday activities better.  So, as our kids are running around and doing all the stuff they do during the day, if they have well-supported joints, they’re going to tolerate that better.  And having a strong musculoskeletal system, so having a strong muscle supporting the joints, can decrease bleeding episodes, which is great in this population.

What does physical activity look like?  What are we talking about?  There are some national health and safety performance standards that are put out.  These are specific to child care early education programs.  These are the hours during the day that your kids would either be in a program at a day care, in a childcare program.  Or for stay-at-home parents, it’s those hours during the day that you’re trying to fill their time.  In addition to these recommendations, there’s also the evening activities that we need to think about.  But according to these national health and safety performance standards the specific time recommendations don’t start until kids are one year old.  So, that infant to one year old we’re not trying to schedule specific physical activities, but starting at age one up to three kiddos need to get 60 to 90 minutes a day of moderate to vigorous activity.  Again, this is during the day.  It doesn’t include the time in the evening.  And then once they hit three up until age five, so up until school age, it’s 90 to 120 minutes a day of moderate to vigorous activity.

What does that mean for this birth to age five?  That’s an opportunity for a variety of activities between moderate to vigorous.  These activities can help promote their gross motor skills and their movement skills.  For younger children we don’t have to worry so much about having specific formal strength training.  It’s nothing like that.  It’s just providing the opportunity for the physical activity that they need.  This should include active outdoor play two to three times a day, which is a lot, especially for stay-at-home parents who are trying to keep their kids active.  It’s not necessarily a rigid program like maybe a childcare setting would be, but making sure to incorporate that two to three times a day of active outdoor play, things such as walking, running, climbing, jumping—all those things that kiddos do.  And then also during the day, two or more structured activities that include movement.  So, some ideas are things like scavenger hunts, playing a game of Twister, playing hide-and-go-seek, or kids these days are really liking the geocaching, which is another way to have activity, but also more structured. 

What about activities on wheels at this age?  Most kids can start peddling between ages one to three.  They have the physical control and their gross motor control to do that and can transition to riding a tricycle.  They’re usually ready to do that by age three.  The transition from a tricycle to a bike varies from child to child.  But it can take a few years to transition from one to the other.  The average age for that is age five. 

Some things we can do to help kids make that transition to a two-wheeled bike from a tricycle, there are the balance bikes now.  These are bikes that don’t have pedals, don’t have brakes and teach kids their balance.  They can learn balance and learn how to steer.  So, instead of having a parent run behind holding the back of that banana seat, like we all did, instead there are these balance bikes now that they can try and fully transition to that two-wheeled bike.  You can also make a balance bike.  You don’t have to purchase a separate thing.  Whatever bike they’re going to be riding you can remove the pedals and lower the seat and it will act similar to a balance bike. 

Other ideas if you’re going to be doing a bike with training wheels is to gradually keep raising the height of the training wheels, so they tip a little more side to side before that training wheel contacts the ground, which, again, will teach some of that balance. 

As far as skating, this will vary a lot from child to child.  You want to look for things like, how is their balance and coordination in other activities.  Do they seem like they’re fairly coordinated?  How is their strength?  Do they have that strength developed yet or not?  And their attention span.  You don’t want to put a kid on skates that’s not paying attention and is going to be going in one direction and looking the other, but a child that is a little bit more prepared to handle that.  Also consider things such as roller skates versus inline skates.  The inline you only have one set of wheels, so the balance there.  And the ankle torque that has, you need to make sure that the children have really strong ankles to be able to support inline skating.  The average age that kiddos can try roller skates is usually around age five or six. 

Once they hit school age guidelines change.  The Division of Nutrition, Physical Activity and Obesity, which is a component of the Center for Disease Control, come out with guidelines that they update frequently.  And this is the physical activity for the full day for kids age six until adult, so six to seventeen.  They recommend getting at least an hour, so 60 minutes of physical activity every day.  This should include aerobic, muscle strengthening and bone strengthening.  The aerobic activity should be the majority of the 60 minutes, but other things can be included and should be included in there as well at least three times a week.  The intensity of the aerobic activity should be rated as a 7 to 8 out of 10 or considered vigorous activity.  One way to rate that is a talk test.  So, if you can sing when you’re doing activity, that’s low intensity.  If you can talk, but not sing, that’s moderate intensity.  And if there’s difficulty talking or finishing a sentence without stopping to take a breath as you’re going along, then that’s going to be your vigorous activity.

As far as muscle strengthening, for kids there are lots of different games:  tug-of-war, being out on playground equipment and rope climbing.  There are lots of ways to get that muscle strengthening.  Resistance exercises:  modified pushups with knees on the floor.  Especially for those older, pre-teen teenagers, that’s a way to get some muscle strengthening.  And then bone strengthening.  These are those activities like the hopping, skipping, jumping, or jumping rope.  And then sports.  Lots of sports include bone strengthening like running, hopping, jumping, you know, volleyball, basketball, gymnastic and tennis.  A lot of those incorporate all of those activities into it. 

The good thing about these requirements is that many activities combine those two to three categories together.  For example, you get both the aerobic and the bone strengthening in that one activity.  With gymnastics you get the bone, muscle strengthening and aerobic all in that activity.  And basketball, volleyball and those types of sports can get both bone strengthening and aerobic.

Once we move into adolescence, many adolescents will get their physical activity from team sports or hopefully from some PE classes at school.  And some of those sports will include a structured weight program, which can help with that bone strengthening.  There are also some activities such as biking or basketball that can be done at either a moderate or a vigorous intensity.  So, as they’re trying to get that vigorous intensity two to three times a week it will depend on their level of effort. 

What are some ways that parents can help promote physical activity?  One thing is to be a role model yourself for physical activity.  So, not just telling the kids to do it, but actually participating with them or having them see that this is something that you do as well, and that’s by including the family or including their peers.  So, having it be fun.  If they’re doing something with family or with friends, it makes physical activity much more fun.  Also providing the opportunities to be active and the equipment that’s needed, so having there be things outside that make the kids want to go out after school and play—something outside versus sitting down in front of the TV.  And along those lines, turning off that TV or limiting the screen time, especially during hours when the sun is out, times where they could be outside and be more active.  So, really limiting that screen time.  And make sure to include your hemophilia team and the physical therapist on your team.  Let them help individualize programs if there any specific joint issues to help keep your child active. 

I included this Activity Pyramid.  It’s very old.  It’s something that we have used for a long time.  It’s been in the literature for a long time—1997 you will see there.  I like it because we are all familiar with the food pyramid from when we were younger.  I just like the way that it’s laid out.  And then it has the three different categories of where to start.  So, if your child is really inactive, looking at the bottom of the pyramid—just easy things to start with.  So, parking further away, taking the stairs instead of the elevator, walking the dog and just finding creative ways to increase activity just to get things started. 

If families are a little sporadic with their activity, you look kind of more in the middle of the chart there and be more consistent with those things.  So, finding an activity that you enjoy, planning those activities into your daily or weekly schedule and setting some realistic goals.  And then if you are consistent, you want to look at being careful not to get stuck into boredom.  So, changing up the activities and finding lots of different things on this chart.  There are hundreds of other activities that could be on here as well.  But finding ways to explore new activities.  And of course, above all, as it says, having fun. 

I like the pyramid idea.  At the top are the things that you’re limiting, so the TV, the computer games, the iPad and all of those things that are taking our kids’ time.  And as you go down the pyramid things that you want to do more and more.  And looking at the bottom are things that should be done every single day to help promote physical activity. 

Now we have another question.  What is important to consider when choosing a sport?  Target Joints?  Sport-specific risks?  Lifetime involvement?  Participant-related risks? Or all of the above?  Okay.  Great.  Everybody is on the ball in knowing what we need to look at.  So, all of those things sound important by themselves, but, as we know, we need to consider multiple things as we’re looking at what sport, if we’re moving into a sport. 

For kiddos under school age, any sports are usually parent driven.  So, the choice is going to be made by the parents—the choice to participate in a sport in the first place, and then the specific sport is going to be much more parent driven.  Once we get into school age, it’s going to be much more kid and specifically peer driven.  So, kids going to school and finding out that their buddy is going to be playing soccer or going to be playing baseball, whatever it is, that’s going to be more where that drive comes from.

Why sports can be really beneficial is in building self-confidence and a sense of belonging with their peers, teaching teamwork and winning and losing.  Hopefully this will continue to be a positive thing.  I have found with my kids with sports that we are shifting more towards everybody wins in our society, and I hope that pendulum swings back a little bit more, because learning winning and losing is very important for kiddos to learn. 

Sports are much more structured, so you think about things like a pickup game, so kids running outside in the cul-de-sac in the neighborhood and playing a game of basketball.  It’s not nearly as structured as if they were doing that as part of a team where there are coaches involved and there might be equipment involved—people kind of keeping track of that and making it much more structured.  There are often built-in strengthening programs, so they’re not having to seek that out separately.  And then the safety equipment that comes with sports.  Again, comparing a pickup game—oh, we’re just playing touch football in the backyard, which we all know is never touch football.  Football is not a great example, because that is not something that we would recommend.  But a lot of sports come with the equipment if you were to be playing on a team versus just doing a pickup game. 

How do we help kids choose the right sport specifically with the goal of successful participation and preventing or limiting injuries and bleeds?  Things to look at are sports-specific versus participant-related risks.  If you look at something like football or hockey, regardless of whether or not there is a bleeding disorder, these have inherent risks, and that’s specific to the sport.  So, there is a risk for anybody participating in those activities versus something like tennis, which may not have as much inherent risk in the sport.  But if you have a kiddo with a hurt ankle, all of the running and quick stopping and twisting could be a participant-related risk for your child.  So, having to consider both of those things when looking at a sport. 

Interest level.  You can pick the perfect sport, but it really doesn’t matter.  It’s not going to be perfect if your child is not interested in it, so making sure to keep that consideration. 

Availability in your area.  For us here up north, where I am, snow skiing is a great activity.  If you live in California that might not be so available. 

Target joints/bleeding frequency.  So, looking ahead of time at what the issues might already be in your child, where you’re seeing more bleeding frequencies and staying away from sports that have a higher potential to aggravate those joints. 

Lifetime involvement.  As I talked about earlier, setting kids up early on to continue being physically active throughout their life.  It’s not very often that we see adults playing soccer, but we see a lot of adults continuing to do things like tennis and golf as they get older.  So, thinking about something that could be continued on outside of high school and college years.

Considering things for progression of age.  Some sports start out with not a lot of contact, pretty easy, not a very hard schedule, and then as kids get older the intensity of it increases, the competiveness, the impact of all of those things progress significantly when kids get into the high school years.  And so considering that when they’re young and thinking about if you want to get your child involved in something that may need to be taken away once it becomes too much impact when they get older. 

Looking at recreational versus competitive options.  A lot of sports have both.  Where recreational will maybe have fewer practices and fewer games during the week—just a less intense level—where competitive have lots and lots of practices and lots of games, and becoming more of a year-round versus a seasonal activity, which happens with a lot of sports these days.  The expectation is that the child continues it year round, which can be very difficult on joints and muscles. 

Also looking at the potential for impact—impact with the surface.  In soccer falling down, impact with other players.  And that’s where football and hockey really are not on the list, because you have to impact other players—that’s the point.  And impact with equipment, so the ball or whatever it is that the sport requires. 

Finally looking at organized versus pickup games.  I mentioned this earlier, but often having an organized sport can be better, because it will come with the equipment, will come with instruction from a coach, the coach is there monitoring what’s going on versus a pickup game.  Often you will hear parents say, “They’re not going to do any sports.  It’s really not safe.  They’re just going to play something with their friends in the neighborhood.”  And those sometimes can be a more dangerous situation. 

How to we make sports and activities safer for kids?  One thing to look at is equipment.  I often tell kids, and I have certainly told my own kids what I think a great rule to have is a helmet for anything on wheels.  So, a helmet is not just for biking.  We have roller skating, inline skating and downhill skiing.  For those of us who are now in our 30s, 40s and 50s now, nobody wore a helmet.  Fortunately nowadays kids are wearing helmets for all of these things, so they’re not going to be the only one.  It’s becoming a much more accepted thing.  But having that be an expectation and something you start with them very young.  As soon as they get onto a bike that they have a helmet on their head so they will associate those things.

Looking at the required versus recommended equipment.  For example, in baseball there is not a faceguard on the helmet, but that’s something that can be added.  Or something like a face mask for being in the infield.  So, there are different things that are required for a sport and then there are some that are recommended that you can look into and make sure to add those little extra recommended components.

Looking at things specific to underlying joint issues.  If you’re going into it knowing that there is an ankle issue, is there something preventive that can be done?  Is there an ankle brace?  Something equipment-wise that is preventive.

Preparation is huge for safety in sports and activities, so choosing a position wisely.  A lot of sports have multiple positions on the team, so looking at the one that has less impact, less overuse and those types of things, and choosing the position that you encourage your child towards.

Pre-season training can be very helpful in having kids be successful.  So, they have already done some training.  They’re strong and ready to go when the season start so that they don’t start off with an injury that takes them out of the first few weeks.

Meeting with your hemophilia team ahead of time.  So, before a sport or activity starts having that meeting and talking about concerns.  Have your physical therapist help look at what the different positions on the team are and what might be a better choice for your child.  And also having them help set up a plan for when bleeds do occur.  Part of that plan could be having a first aid kit always in the sports bank, including things like an ice pack, an ace wrap and knowing what the plan is for treating a bleed.  Is the factor going to be there?  What is the dose?  What is the plan going to be for that?  And also having a discussion about when it’s going to be the time to reconsider.  So, one bleed can happen.  Is it a repetitive?  If there are three bleeds into the same joint during the sports season is that when everybody agrees that it’s too much?  And if that decision can be made ahead of time going into the sport, it’s much easier than to deal with it when it happens.  And also having a discussion about return to sport, so when an injury or a bleed does occur, what types of things you need to look for before you allow the child to return to the sport.  What does their motion need to be?  What does their strength need to be?  And, again, your hemophilia team, and specifically a physical therapist can help with that. 

Always re-assessing, especially as your child gets older.  So, as the competitiveness of a specific sport increases, reassessing if it’s still appropriate.  As the size of the kids and the size of the other players increases, is that making a difference?  And, again, the year-round expectations that often come as sports progress.

Final thought and tips about physical activity.  Again, early on when we were talking about the younger ones, when you’re looking for childcare settings, making sure that you’re finding a place that offers a variety of physical activities and incorporates the recommendations that you saw on that early slide.  Remember to try that talk test and teach kids that talk test to determine the intensity level.  Don’t forget about footwear.  Footwear is crucial to protecting not only the ankles, but as soon as your foot hits the ground anything that happens there transfers all the way up the body, so it can affect the knees, hips, back and everything on up, so making sure that they’re wearing supportive, well-fitting shoes.  I think the time that this comes most into play is for that non-structured outdoor play.  So, when the kids just go running out the door after school or in the evening to play with friends, paying attention to the footwear, especially things like Crocs.  Those darn Crocs.  Kids love them, but there is just no stability there whatsoever.  And if they’re running on the grass, uneven ground, slippery grass or anything like that, that really can set up for ankle injuries. 

Don’t forget sunscreen as we’re promoting all these outdoor activities.  Remember to try to build activity into the normal family routine so it doesn’t become a chore and that it’s not something that, “Oh, we have to go do this,” but it becomes part of the daily routine or the weekly routine.  Just get moving and have fun.  Make technology your friend.  Jen mentioned a little bit earlier things like the Fitbit.  There are so many technology things out there right now, and if we’re trying to take away the screens, what are some things that we can put back in?  Things like a Fitbit where kids can feel like they have some ability to track their activity and know what they’re doing during the day. 

That concludes the presentation this evening.  We do have some time for questions if anybody has any questions.

ANNETTE GOSLIN:  Thank you.  Ladies and gentlemen, to ask a question via the web presentation, please select the Chat pod located in the lower left corner of your screen, then type and send your question.  If you would like to ask a question live via your phone, please press star 1 on your telephone keypad.  I will announce each caller prior to bringing you into the conference.  Please remember if you have your phone on mute, take it off mute when you are selected to ask your question.  Once again, to ask a question via the web presentation select the Chat pod in the lower left corner of your screen, type your question into the text box and click the Send button.  And to ask a live question, please press star 1 on your telephone keypad. 

Our first question is from Samantha.  Should potential for gum bleeding discourage someone with hemophilia from flossing?

JENNIFER MAAHS:  That’s a great question.  I’ll take that one.  This is Jen.  I think what happens is when your gums—I mean, think of your gum as kind of like a muscle.  The more you use it and the better shape it is—so, a lot of people find when they start flossing, because their gums are a little kind of friable and sensitive, that they might start bleeding, but that’s not a reason not to floss, because what you will find is eventually that will get less and less and your gums will be in better shape because of it.  That’s a great question and, boy, what an excuse not to floss, right?  But it really does help you in the long run.  

ANNETTE GOSLIN:  Okay.  Excellent.  Thank you.  Next question.  How about long distance running such as a teen with hemophilia who enjoys cross country?  How concerned should he be about long-term impact on joints?

KIM BAUMANN:  Another great question and I’ll take that one.  So, that’s definitely something to consider.  There are things that can be done to make it safer.  So, we talked about footwear a little bit, so making sure that they’re wearing the appropriate footwear and that the shoes are updating and switched out often.  There are recommendations for how many miles a pair of shoes can be worn, and also just looking at them and making sure that they’re still providing support.  As I talked about looking at what’s happening with the joints, are they going into this activity having had any ankle, or knee, or hip issues in the past?  Is this going to be a limited amount of time?  Is this just going to be on a cross country team, or is this something that they’re wanting to do year round?  So, lots of different things to consider and it would be a great thing to take back to your specific hemophilia team and your physical therapist to discuss.  I can tell you that it has been an issue.  I have seen this be an issue for some other kiddos, and especially the older teens/young adults where that just becomes too much continuous impact and they need to look for a different activity. 

ANNETTE GOSLIN:  Okay.  Thank you.  That was our last question.  Thank you to our speakers.  Your feedback is critical to us not only in evaluating this presentation, but in planning of future webinars.  Please complete this five-minute survey appearing on your screen now by clicking on the link.  Thank you for attending.  This concludes the program.

[END OF WEBINAR]

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