Continuing my focus on increasing strength and endurance to enable your child with NF1 to participate in sports and other activities, this month I will be taking things from the core down to the ground. If the core is solid, the next place for strengthening to improve balance and agility are the legs. The legs can be broken down into three key areas: ankle/foot, knee and hip. Each of these critical joints benefits from specific exercises to progress motor skills.
The foot consists of 26 bones, all held together with ligaments. When foot muscles are weak, balance is decreased and the risk of pain and injury is increased. Despite the intricate inner workings of the foot and ankle, strengthening exercises for this area may actually be the easiest to sneak in throughout the day.
Try out the following foot and ankle strengthening exercises with your child:
Switch from walking on tip toes to strengthen the back of the ankle to walking on heels to strengthen the front of the ankle.
Strengthen the small muscles within the foot by standing on unsteady surfaces (such as a core yoga disk or memory foam pillow) while brushing teeth or doing dishes.
Next, we have the knee, which can be a problem spot for children with NF1. Many of the children I treat experience a great deal of “end range” weakness at the knee, which means they experience difficulty in getting the knee totally straight and holding that position. Leg lifts (with really straight knees) can help alleviate this weakness. Also, a variety of fun, daily activities like riding a bike and jumping rope will strengthen and stabilize the knee.
Finally, we have the hip, which connects the leg to the core. The hips do get some benefit from core strengthening activities (detailed in the June Courtney’s Corner blog), but specific hip strengthening exercises are more beneficial to improve overall strength. Perform the following exercises with your child to improve hip strength:
If you believe leg weakness and pain are preventing your child from engaging in daily activities, completion of a brief burst of physical therapy may help. In as little as four weeks of therapy, we can identify which muscles are weak and create a specific strengthening program for your child. Increasing strength to improve your child’s ability to participate in sports and other activities not only has a big impact on motor skills, but also aids in further development of cognitive and social skills.
-Courtney Dunn, PT, DPT
Washington University NF Center Summer 2015 Newsletter
Check out the summer 2015 newsletter for some of our most popular research articles, recommendations to improve your child’s ability to participate in sports and other activities, details about upcoming events this summer and more!
Some of the highlights in this issue include:
Human Skin Cells Help Researchers Understand Learning Problems in NF1
Courtney’s Corner: Improving Strength & Decreasing Pain in Children with NF1
Renowned Jazz Musician Plays for Kids at St. Louis Children’s Hospital
Courtney’s Corner: Focus on Core Strength to Increase Participation in Activities
Many of the parents I speak with at the NF Clinical Program report similar struggles, “Participating in sports is really difficult for my child; why can’t my child keep up?” Unfortunately, this question is not easily answered. In the last Courtney’s Corner, I introduced trends we have seen in children with NF1, including decreased strength and increased fatigue and pain.
In this month’s blog, I will address the first steps necessary to increase strength, and lessen the pain and fatigue many children with NF1 experience when completing sports and motor activities. Participating in community sports and activities involves the integration of many body systems to achieve a goal. So, to increase participation in activities, from family hikes to basketball teams, let’s try starting from the ground up. Or, more appropriately, from the core up!
Core strength includes the ability to hold your trunk in a good, neutral alignment while performing various activities. Children with decreased core strength tend to sit with a hunched back and stand with a “sway back.” You may also notice their shoulder blades seem to be positioned forward, out of alignment with their sternum and ribcage.
Why is core strength important? Having a weak core is synonymous to attempting to perform activities from an unstable surface. Think about how much easier it is to shoot a hockey puck while playing street hockey versus ice hockey. What is the difference? Street hockey gives you a stable surface on which to work, whereas ice is much less stable, requiring the work and coordination of more muscles in order to achieve the same shot.
This holds true for core strength. When the core is weak, fine motor skills, coordination and balance are all more difficult. Increasing core strength can be a frustrating challenge because the strengthening exercise movements are often slow and subtle. However, choosing exercises that strengthen several muscles at once can enable you to make progress more quickly with less time commitment.
Here are some strengthening activities I recommend to start improving your core strength:
Planks: Create a family competition! Start with a ten second hold the first day, and try adding ten additional seconds each day. See who can complete the most days in a row.
Superman Holds: Lie face-down and simultaneously raise and hold your arms and legs off the ground. For an added challenge, try to hold a ball in between hands and/or feet while holding them in the air.
Jelly Bean Holds: A beginning step to sit-ups. Try holding a “jelly bean” position. The goal is to be able to hold this position one second for every year of age (e.g., six-year-olds should aim for six second holds).
Push-Ups: Push-ups add arm strengthening to core strengthening, which means you get more bang for your buck!
Core strengthening throughout the day: Consider having your child complete his/her homework while sitting on a large ball. This keeps the trunk muscles active while doing homework, with the added benefit that bouncing while trying to concentrate typically helps keeps kids on task.
Keep an eye out for the next Courtney’s Corner when we will explore foot, ankle, knee and hip strength!
Courtney’s Corner: Improving Gross Motor Skills in Children with NF1
“Sports seem really hard for my child.” I often hear this comment from parents in the Washington University NF Center Clinical Program, and each time I feel frustrated that I don’t have a good recommendation to alleviate this concern. After observing the gross motor skills of over 100 children with NF1 in our clinic, I have seen several trends:
They tend to be physically weaker than their peers.
They typically have more difficulty with coordination and balance, making riding a bike and playing a variety of sports especially challenging.
They frequently report high levels of fatigue with daily activities.
Despite these generally accepted developmental challenges in children with NF1, there have been very few research studies initiated to examine methods to improve the motor skills in these children. Currently, there is only one published outcome-based study, and it found:
Children with NF1 can improve their strength through specific strengthening activities, and
Specific strengthening activities appear safe for children with NF1.
As a result, in the next several Courtney’s Corner blogs, I will be exploring various aspects of gross motor skills and providing simple ideas to improve motor skills in children with NF1. When looking at making changes in motor skills, we need to keep one thing in mind: change takes time. It reminds me of advice a friend gave me when I decided to train for a marathon. She explained to me that training for a marathon starts off really fun – everyone is excited for you, and it is exciting to talk about your new goals with other people. However, once you are finished talking and the true work begins – long runs alone in the rain, sore muscles and less time for completing other daily tasks, the training becomes less fun, and it can be very easy to lose sight of your end goal and give up.
I have often observed a similar experience when working on skills with children. When the team discovers an area of concern that is important to address, we get excited and are eager to “get to work.” However, much like increasing mileage when running, achieving noticeable progress takes time. To help your child avoid burnout, it is vital to find methods to incorporate activities into your daily routine. More specifically, I recommend sneaking activities into your day by sneaking screen time out of it! In fact, one of the best ways to support your child in achieving a new level of gross motor skills is by increasing the activity level in your entire household. Although sitting in front of a screen can be educational, relaxing, or just plain fun, reducing the time you and your children spend looking at screens can really change the dynamics of your day.
So, what happens when screens get turned off? If your house is anything like mine, the scene looks something like this: “Mom, whatcha doing?” “Mom, can I have a snack?” “Mom, can you fix me a snack?” “Mom, do you want to play a game?” “Mom, can I go outside?” “Mom, why do dogs walk on four legs?” You get the idea…and this is usually while I am trying to throw together dinner, finish laundry so they can wear pants AND a shirt to school the next day, and return emails for school and work.
But, what else I see happening when screens are turned off is fascinating and inspiring. My middle school-aged son sits down to complete a project with clay that my daughter neglected to clean up. Typically not a cool enough activity for this tween, but since it was out and screens were not an option, he sat down, read the directions and completed a clay creation all on his own. The therapist mom in me secretly smiled as I watched his fingers work to put together such an intricate piece of art. As just another mom, I smiled at the pride he had in himself as he independently accomplished a small project. Although this example does not specifically deal with gross motor skills, it involved a significant amount of fine motor, problem solving, and reading skills. He also initiated a project and followed it through to completion. It made me realize that we probably have more time in our days to sneak in taking the dogs for a walk, playing catch or having an impromptu dance party.
Limiting screen time is a process and often does not come without resistance! First, try decreasing purely entertainment-related screen usage during the school week. I find most days are so packed with activities that my kids usually don’t even notice if we don’t turn the TV on or get out the iPad. You can also try making it a game – track how many times your kids can make you take them outside for a ten minute “motor break.” Or, make screen time a goal-driven treat – after taking the dog on five walks, you earn a family movie night. Find whatever motivates your family, and run with it (literally). You may be surprised to find fewer complaints of being tired once you begin moving more!
Stay tuned as we will look at improving the strength of specific muscles in the next Courtney’s Corner blog!
Courtney’s Corner: Staying Active This Winter
After the excitement of the holidays ends, the winter months can begin to feel somewhat daunting, especially in St. Louis, where the cold weather can last well into March. As my two children spend more time indoors, they become easily aggravated with each other – often fighting over nothing, and I find myself turning to screens for easy entertainment. Thus, each year around this time, I start thinking about what I can do to make these cold months pass more quickly and peacefully.
Keeping kids active during the winter can be hard, especially when weather limits the time spent outside. Indoor swimming can be a really fun escape from the cold, and community recreation centers, YMCAs and even high schools typically offer open swim time. If your family doesn’t have any of these resources nearby, consider calling a local hotel to see if they would be open to letting your little ones swim for even an hour during less busy times.
Bowling is another excellent indoor activity to consider! Don’t underestimate how young kids can be to start bowling. With bumpers, light bowling balls and bowling ramps, children as young as three years old can bowl.
Alternatively, the cold weather actually creates extra excitement at the zoo, making winter months an excellent time to visit. Animals from cold habitats are more active, and the crowds are much smaller. Before you visit, check your zoo’s website to see if they have any activities already planned, such as treasure hunts or specific lesson plans.
If the weather is too treacherous to leave the house, create activities inside. Obstacle courses are easily made with pillows, yarn and balloons. A dance contest gets everyone on their feet. Some board games focus on lots of movement, such as Hullabaloo. Simon says, hopscotch and red light/green light all work on motor skills as well as balance, motor planning and strength.
Beyond finding alternative cold weather-appropriate activities, try to embrace the slightly slower pace of the winter months. Remember that the warmer months are right around the corner!
Courtney Dunn, PT, DPT
Courtney’s Corner: Holiday Shopping
As the holidays near, I always begin to panic. Not about putting up decorations or hosting a holiday meal, but about having an influx of gifts in the house, which ultimately create more clutter and often go unused. Each year, I try to take a step back and come up with a list of gifts that my children will both love and have an opportunity to learn from.
I turn first to “experience gifts,” gifts that cannot be wrapped. Memberships to the zoo, museums, dance classes, or local community centers all offer opportunities for physical activity paired with education. Gift certificates to bowling alleys, tennis clubs and swimming pools again encourage family outings, and build both memories and muscles.
As a mother, I do appreciate the importance of having fun things to unwrap as well. I love stuffing the stockings full of gifts that promote fine motor development: Wikki Stix, sidewalk chalk, beads to string and paint sets. For presents that take more paper to wrap, consider shopping for items that address gross motor development: scooter boards, golf clubs, balance beams, soccer ball and cones. Board games are always a great option for encouraging family bonding time while also working on fine and gross motor skills. Some examples include Hullabaloo, Twister, and Cranium.
Pooling funds is also an excellent idea for the holidays! Access to technology can be fun and educational, but often very expensive. Asking grandparents and other relatives for gift cards to Apple or Microsoft can allow your kids to purchase big ticket items (especially after the holidays when sales can make these items more affordable).
Many of the unique items I mentioned are available online. Check out these family favorites:
Zoom sliding ball
Connect the Dots
Balance beam (easily made with a 2×4)
Bubbles (especially in a no spill container)
Soccer Cones (for building obstacle courses)
Courtney Dunn, PT, DPT
Courtney’s Corner: Studying Gait, Balance & Hip Strength in Children with NF1
The kids are back in school, fall sports are in full swing, and Halloween is right around the corner – where does the time go? The last few months have been busy for me because we recently started recruiting patients to participate in a new study. The study was designed to determine whether a relationship exists between gait, balance, and hip strength in children with NF1.
This study, made possible through an extensive collaboration between the Washington University NF Center, St. Louis Children’s Hospital Therapy Services, and the Maryville University Physical Therapy Program, has the potential to provide important new information about gait in children with NF1, and highlight possible areas of future research in this at-risk population.
For those of you who have read my previous blog entries, you know I like to encourage daily activities and sports which focus on core strength, balance, and coordination. This is because many of the children with NF1 who I see in the St. Louis Children’s Hospital NF Clinical Program struggle in these areas. While there have been some previous studies on this topic, it primarily sheds light on the need for further research to better understand these issues.
We are currently finishing our data collection this week, and I look forward to working with the therapists from Maryville University over the upcoming months to analyze the results and derive meaningful conclusions. I have high hopes that this study will direct future gait, balance and strength research in children with NF1, as well as lead to the development of future treatments for those who struggle with gait abnormalities, balance concerns and decreased hip strength.
Courtney Dunn, PT, DPT
Courtney’s Corner: Evaluating Your Child for Orthotics
As a physical therapist, I spend a lot of time looking at feet. I observe children’s feet during walking, running and jumping activities, as well as when they are sitting. I do this to evaluate their arches, strength and range of motion. In general, children are born with very flat and chubby feet, but by two years of age, their feet thin out and their arches begin to develop.
Why are flat feet in children with NF1 especially concerning? Children who continue to have poorly developed arches at three to four years of age tend to have an immature walking pattern. Their feet stay far apart while they walk because of the need for a wider base of support, yet they often still have decreased balance. Additionally, individuals with significantly flat feet throughout development are at high risk for long-term hip and knee pain.
Image courtesy of Cascade Dafo
Children with NF1 are also at risk for progressive pes planus deformity, a foot deformity in which the child not only fails to develop an arch, but their foot actually begins developing into an overly flat, or pronated, foot. This condition makes their feet very difficult to position properly, even with the support of a brace. It can cause significant fatigue and pain in the feet and lower legs, and in severe cases, may require surgery.
So, what can we do to help? At the NF Clinical Program at St. Louis Children’s Hospital, we pay close attention to feet! If a child is not developing an arch by three years of age, we will often fit the child with a shoe insert to help support the arch. The biggest goal at this young age is to improve alignment in the feet and, in turn, through the hips and legs as well. This improved position often also decreases the base of support while walking, and improves balance. As a child grows, he or she may need more aggressive support to help prevent an even more pronounced flat foot. At times, it is necessary to use a higher brace, called a supramalleolar orthotic (SMO).
If you are concerned with your child’s foot position while standing, or if your child is complaining of foot or leg pain, contact your health care providers. The answer may be as simple as placing an insert in the shoe.
Courtney Dunn, PT, DPT
Courtney’s Corner: Making Moments Matter
As the school year begins, it can feel as if the pace of life switches to fast forward. Work schedules, school schedules, activities, sports and homework all need to fit in a finite amount of time. If you are also coping with school struggles, whether it is with social interactions, academics, attention or motor skills, activities that should only take a few minutes to complete often snowball into full-night events.
As a physical therapist and a mom of two school-aged children, I try to modify activities so I can accomplish two goals at once, rather than just one. Yes, realistically this sometimes means that the original activity takes a little longer to complete. However, in the end, the minor changes usually keep my kids more excited about the task and enable them to continue to build a foundation of strength and balance, which allows for mastery of other skills. Here are a few of my favorite tricks of the trade!
Consider having your child sit on a therapy ball while doing homework. Not only does allowing a child to bounce while sitting help them stay focused on the task longer, it also addresses core strength and balance.
Try practicing spelling words by creating the words out of play dough. This is not only excellent for finger strength and dexterity, but it also allows children who struggle with handwriting to practice spelling in a different way.
Find simple recipes for children to make their afternoon snack all by themselves. This is an excellent way for them to practice reading, following directions and maintaining attention. Additionally, it involves an end product they are invested in obtaining to satisfy an immediate need; if they do not complete the snack, they will remain hungry!
Consider purchasing a core strengthening disk (available online via Amazon, Target, Walmart and a variety of other specialty stores), and have your child stand on it while brushing their teeth. This works on balance and ankle strength for at least 2 minutes, twice a day.
If you choose to take the elevator, have your child practice standing on one leg while the elevator is in motion. Making this a family challenge will certainly add a little excitement to your elevator trips!
If you spend a lot of time in the car with your children, consider listening to CDs that review math facts. Multiplication facts are much easier for some children to learn when they are set to music.
If you have a child working on reading out loud, suggest that they read books to toddler-aged neighbors or relatives. This begins to develop a sense of responsibility for the older child as well as strengthen their own reading skills.
And finally, my personal favorite, look at chores needing completion around the house and decide which ones address motor skills, strength, problem-solving or organization skills. Assign those chores to your child! Sock sorting works on matching skills, carrying trashcans to the curb addresses strength, and sorting the recycling works on problem-solving. Chores also give children a sense of responsibility and can address many aspects of development.
Courtney’s Corner: Back to School Shoe Shopping
As the kids head back to school, new shoes often top the shopping list. With the cost of new shoes sometimes reaching upwards of $100, we want to pass on some basics regarding shoe selection from a physical therapist’s perspective.
First, shoes for early walkers are primarily for protection. Shoes are not required to learn to walk nor are they needed to form an arch. Actually, time spent walking without shoes is far more important for balance, strength and development of the feet.
As children become more adept walkers, shoes become primarily a fashion statement. The most important thing to remember is to buy shoes that are economical enough to throw them out as soon as they are outgrown. A properly sized shoe is far more important than a “supportive” shoe or a trendy shoe. For the 2-3 year old child, shoes do not need large arch supports, as the arch isn’t developed yet. Since the arch is not yet developed, most toddlers have a wide foot. With this in mind, most toddler-sized shoes are already wide.
If your child does seem to have a very wide foot, discount shoe stores generally have wider shoes available (and at a bargain price!). If your child seems to have a very flat foot, discuss it with your physician and consider having their feet evaluated by a physical therapist. Excessively flat feet can cause long term hip and knee pain. Some children with NF1 also develop a “progressive flat foot” which can require surgery. Shoe orthotics can help align the foot properly, hopefully decreasing the risk of pain in the teen and adult years.
Having a pair of sturdy tennis shoes is a must. While trendy, flip-flops, clogs and loose fitting sandals are a trip-and-fall hazard. Tennis shoes with snuggly tied laces or Velcro straps provide additional stability when playing soccer, riding a bicycle or chasing a Frisbee.