Symposium Sneak Peek: Dr. Courtney Dunn and Nicole Weckherlin Discuss Optimizing Outcomes for Children with NF1

cd and nwCourtney Dunn, PT, DPT, is a Physical Therapist at St. Louis Children’s Hospital and became the lead physical therapist for the NF Clinical Program at St. Louis Children’s Hospital in 2010. Dr. Dunn applies her expertise to identify developmental delays in young children with NF1 and was instrumental in the establishment of Club NF, a series of family-focused, educational programs that employ play-based therapy for children with NF1.

Nicole Weckherlin, OTR/L, is an Occupational Therapist at St. Louis Children’s Hospital. She is particularly interested in the use of haptic devices (iPads) as part of the therapeutic approach to children with developmental delays. Based on her expertise, Ms. Weckherlin has developed a suite of apps that target areas of delay common in children with NF1.

At the Washington University NF Center Research Symposium, Dr. Dunn and Ms. Weckherlin will describe the unique therapy resources developed by Team NF to benefit children with NF1. Dr. Dunn and Ms. Weckherlin will be speaking at 3:30PM on May 16, 2014.

Nicole’s Nook: Limiting Your Child’s iPad Time

The iPad can be useful, educational and, of course, entertaining. Sometimes it is so entertaining that some children have a hard time quitting an app or moving onto something else. Obviously, this can be a detriment to productivity, but luckily the iPad comes equipped with some practical functions to help address this common problem.

Before allowing your child to start playing an app, you can set a locked timer. A locked timer allows you to choose the amount of time you would like your child to have for a specific iPad activity. Once the time is up, the screen becomes locked and can only be unlocked with a passcode. For directions, see below:

Setting a Locked Timer

To set a passcode lock

  • Go to settings > general > passcode
  • Choose lock
  • Turn passcode to on
  • Set a passcode

To set a timer

  • Open the clock app that comes standard with the iPad
  • Tap the timer tab at the bottom of the screen
  • Set the timer for the amount of time you would like your child to have
  • Select the timer alarm button located below the timer circle
  • Scroll to the bottom and select stop playing
  • Select set
  • Select start

Now open the app you want your child to use. When the time is up, the iPad will automatically lock the screen until the passcode is entered.

Another option is to use Siri to set the timer. As long as you have the alarm set to “stop playing”, all you have to do is tell Siri the amount of time for which you would like the timer set. Once time is up, the iPad will automatically lock the screen until the passcode is entered.

These settings can really make a difference in helping your child use the iPad productively. It can help those children who have difficulty transitioning from one activity to another or those children who have trouble giving up the iPad or a specific app.

It may also be helpful to have a visual timer of some sort nearby to provide some predictability and anticipation that the app is only available for a limited time.

Nicole Weckherlin, OTR/L

Spring has Sprung!: Therapy Activities for Spring

Today is the first day of Spring! Celebrate by getting outside and playing together. Here are some great Springtime activities that can help your child work on skills often delayed in children with NF1.

Play with balls

Catching, batting, throwing a ball into a basket, bouncing a ball–anything you can think of! All are great ways to develop coordination.

Jump rope

Jump on your own or jump as a team. Either way you’re building up endurance and visual motor skills.

Garden

Plant flowers or maybe even vegetables! Children are much more likely to eat healthy foods if they plant them and watch them grow.

Hike

Explore nature while strengthening your muscles and motor control.

Play with chalk

Draw a picture or practice letters. Either way is a fun, colorful chance to develop grasp and writing skills.

 

What other plans do you have for this Spring? Getting outside and being active are the main goals so whatever you choose, make sure to have fun!

iPad App Therapy Clinic Launched!

kids-playing-with-ipad

Some children with NF1 experience developmental delays that can make some aspects of school and everyday life difficult. One way to address these issues is to use technology, such as the iPad, to enable access to alternative opportunities for education and personal growth. But how can you learn about everything the iPad can afford your child?

Our Occupational Therapist, Nicole Weckherlin, has begun offering iPad instruction and training sessions for children and families with NF1. The goal of these private sessions, made possible through St. Louis Children’s Hospital Therapy Services, is to teach families with NF1 how to use the iPad (or other tablet that supports the same apps) to improve productivity and communication skills while promoting independence.

While the App Recommendations section of our website is a fantastic online resource for apps beneficial in addressing developmental delays often experienced by children with NF1, a session with Nicole Weckherline, OTR/L promises to be an opportunity for personalized recommendations for the best apps and iPad utilization for your individual child.

Appointments at the iPad App Therapy Clinic are being made now. To schedule an appointment or for more information, please contact Nicole Weckherlin at ntw2414@bjc.org.

Symposium Sneak Peek: Dr. Jonathan Epstein Discusses New Models of NF1-associated heart defects

epsteinDr. Epstein is currently the William Wikoff Smith Chair in Cardiovascular Research, Chairman of the Department of Cell and Developmental Biology and the Scientific Director of the Pennsylvania University Cardiovascular Institute.

Dr. Epstein’s research focuses on the molecular mechanisms of cardiovascular development. His group has been at the forefront of determining genetic and molecular pathways that cause congenital heart disease in individuals with NF1.

At the Washington University NF Center Research Symposium, Dr. Epstein will describe his exciting work on developing zebrafish models of NF1-associated heart disease. Dr. Epstein will be speaking at 11:00AM on May 16, 2014.

 

Courtney’s Corner: Learning to Ride a Bike

The weather is finally starting to warm up and Spring is right around the corner! That means it’s time to start thinking about outdoor activities like riding bikes.

Learning to ride a bike can be challenging for any child, but it might be especially frustrating for children with NF1. Children with NF1 tend to experience developmental delays in some of the key skills necessary for riding a bike such as balance and coordination. While this can make learning to ride a bike difficult, it also makes it all the more important! Not only is riding a bike great exercise, but it also teaches balance and coordination. The more your child practices these skills, the more capable he or she will be of balancing and being coordinated in every day life.

Here are some steps to make learning to ride a bike stress free and fun:

1. Start your child on a tricycle. The skills necessary to ride a trike should emerge between the ages of three and four. If you start your child out young, it will make it easier to learn bike skills in the future.

2. Once your child outgrows the trike, try a low to the ground bike. Most children will feel more comfortable if they can easily reach the ground.

3. Once your child feels ready, focus on teaching him or her how to balance rather than how to move (pedaling). Balance is the primary issue, and pedaling will come with time. To teach balance, skip training wheels and bike down a hill (not too steep!). When your child does both these things, he or she will more readily understand what it feels like to balance on a bike.

If you follow these steps, learning to ride a bike should be a positive experience, but remember, the key may be lots of practice! If your child does not master bike riding on the first attempt, do not give up. Completing multiple short sessions several days in a row may reduce expectations and keep to process fun and stress free for you and your child.

Courtney Dunn, PT, DPT

Washington University NF Center Spring 2014 Newsletter

Spring 2014 Newsletter

Check out our Spring 2014 newsletter!

Inside this issue:

Gender Influences Symptoms of NF1

Toddlers Show Progress After Beat NF

Get Involved in Research

And More!

Check out our previous newsletters as well!

SAVE THE DATE: Club NF Rocks!

The Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation is excited to announce its April 2014 Club NF event – Club NF Rocks!

Please join us at Climb So iLL in downtown St. Louis on April 5, 2014 for indoor rock climbing. We will be focusing on strength, motor planning and coordination as well as increasing flexibility.

Parents will have the opportunity to speak with Thomas E. Kennedy, III of the Law offices of Thomas E. Kennedy, III, L.C. Mr. Kennedy is a legal advocate for educational equality and has focused his career on fighting for the rights of the underserved, including those with developmental disabilities or delays.

To learn more, check out our flyer or contact Kirsten Brouillet at brouilletk@neuro.wustl.edu.