UPDATE: NF Clinical Trials – Spring 2015

research2Check out the NF Clinical Trials section of our website, which was recently updated to include current NF-related trials from clinicaltrials.gov. Some new studies that have been added are:

NF1 Clinical Trials:

NF2 Clinical Trials:

If you are interested in participating in an NF Clinical Trial, please be sure to explore your options. Clinical trials are an exciting and important opportunity for people with NF1 and NF2 to make a difference in their own lives as well as the lives of others affected with NF1 and NF2. It is important to note, when you participate in a clinical trial or study, you are:

    • Receiving the most advanced care.
    • Giving to future generations of people living with NF1 and NF2.
    • Helping to change the way we practice medicine.

 

Courtney’s Corner: Improving Gross Motor Skills in Children with NF1

spring 4“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:

  1. Children with NF1 can improve their strength through specific strengthening activities, and
  2. 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!