Fun Halloween-themed Therapy Activities and Apps

CSpider Webelebrate Halloween with more than just costumes, candy and trick-or-treating this year! There are many fun Halloween-themed activities you can do with your children to hone their gross motor, fine motor and visual motor skills which they may struggle with as a result of their NF1. Here are a few fun suggestions for activities and iPad apps to keep your children occupied this Halloween.

Pipe Cleaner Spider Webs
Materials: pipe cleaners, popsicle sticks, duct tape and googly eyes (with sticker backs)
Skills Addressed: fine motor, visual motor, motor planning
Instructions: Place the popsicles in a cross pattern and tape them together to create the structure. Then wind the pipe cleaners around the popsicles in different patterns to form the web. Twist a couple of pipe cleaners together to form the spider, stick it into the pipe cleaner web and stick a couple of googly eyes on for a fun Halloween spider web, complete with spider!
Many thanks to Therapy Fun Zone for this great idea!

Ghost Walk

Ghost Walk
Materials: white copy paper, colored markers, scissors and tape
Skills Addressed: gross motor, fine motor, academic – shapes, colors and counting
Instructions: Trace each child’s foot on the white copy paper, and (depending on age) have your children cut out about 20 feet total using child-safe scissors. Decorate each foot “ghost” by drawing on black eyes and different colored/shaped mouths with markers. Then tape the ghosts to the floor in a large circle. Turn on your favorite spooky Halloween music (or anything you have on hand) and have your children walk around the circle stepping on each ghost as they go. Stop the music and:

  • Call out a specific mouth color/shape they have to locate and stand on.
  • Ask the children to call out the color and/or shape they are standing on.
  • Ask the children to do an activity on a specific colored/shaped ghost – “Go sit on the ghost with the purple triangle” or “hop with one foot on the ghost with the red circle”

Repeat the steps and try having them do different things each time the music stops!
Thank you Toddler Approved for this fun Halloween activity!

Halloween Eyeball Toss
Materials: Plastic pumpkin tub, ping pong balls and colored markers
Skills Addressed: gross motor, fine motor, visual motor, balance, coordination
Instructions: First, draw eyeballs on the ping pong balls. Then, set up the pumpkin in a safe area without any breakables.The children can try to toss or bounce the eyeballs into the pumpkin from different distances while sitting or standing. Increase the difficulty by having them stand on one foot while tossing the eyeball!
Thanks to Ramblings of a Crazy Woman for this fun and easy activity!

Halloween-themed Apps Toca Boo
Sago Mini Monsters: Children can create their own loveable monster, choosing from different features, colors and decorations. Once their monster is complete, they can feed them snacks, brush their teeth and take pictures to share with friends and family.
Toca Boo: In this fun app, children can help Bonnie sneak around her big old house in a ghost costume scaring her family as they are getting ready for bed.
Go Away, Big Green Monster!: This interactive book is a great read for children on Halloween. Children can read or sing along with the book’s narrator as they interact with the story and watch the monster react to their selections.
Thank you to MAC and Toys for these great Halloween app suggestions!

Nicole’s Nook: Age Appropriate Apps for Children 0 – 5 Years

In this month’s blog, I thought that I would take a moment to showcase the technology currently available for younger children (birth to 5 years old). Today’s technology-saturated world has made it difficult to determine how much is too much and how young is too young. For children under 2, the American Academy of Pediatrics in 2011 stated that “we discourage the use of media by children under the age of two.” Being the huge technology proponent I am, I have often been asked about my response to this recommendation.

First, I think it is important to understand that this recommendation of “zero screen time” generally refers to the passive viewing of television or devices. Using such media as a “babysitter” is highly discouraged, and I could not agree more. Parents are urged to develop a balanced view of technology, making sure that any and all screen time is spent with their children in an engaging and interactive way. This shared experience provides an excellent opportunity for communication, social interaction, learning, stimulation and bonding. In addition to utilizing technology, parents must also provide a variety of sensory-rich and motor-based activities, integrating them into their daily lives. Ultimately, technology requires a balance between productive, educational technology and fun, gaming technology.

For children under 2 years of age, my app recommendations include cause/effect, music, and storybook apps.  Some of my favorites are:  Duck Duck Moose, Pocket Pond, Peekaboo Barn, Glow Coloring, aXylophone, R-Tap Drums, Eensy Harp, Toddler Puzzle Shapes, and PicABoo.

For children ages 3 to 5 years old, the Toca Boca and TeachMe apps are great, as well as Interactive Alphabet, Preschool Monkey Lunchbox, Toy Story Read Along, The Great Cookie Thief and Storybots.

The iPad, like any other device or piece of technology, requires responsible use. There are many settings and restrictions that can be engaged to optimize its use. For example, if you go to Settings>General>Restrictions, you can prevent the installation and deletion of apps, in app purchases, and/or prevent access to built-in apps, such as Safari, the Camera or iTunes. You can also control the content of music, movies, television shows, books or apps that appear on the iPad. Another exciting feature is Guided Access, which allows you to “lock” a child into an app. This is especially useful when you want a child to maintain focus and attention to complete a task vs. moving in or out of apps or doing something non-productive or non-educational. To set this up:

  • Go to Settings>General>Accessibility>Guided Access.
  • Turn On and set Passcode.
  • Go to any app, triple click home button, select Guided Access. Options include: Turning Off Hardware Buttons, Turning Off Touch or Turning Off Motion.
  • If you want to select a certain area, use your finger to circle the area. It will gray out the designated area. You can also turn off sleep/wake and/or volume buttons.
  • When finished, press Start, and Guided Access is now enabled.
  • To exit Guided Access, triple click the home button, which will prompt the passcode keypad and enter the passcode to exit.

Advances in technology have had a dramatic impact on society, as well as the development of our youth. However, with the right guidance, settings and apps, the iPad can be a powerful tool for learning, communication and productivity. While it does provide entertainment in the form of fun and games, it can also be a very purposeful and effective device.

Nicole Weckherlin, OTR/L
Occupational Therapist

SAVE THE DATE: Club NF Goes Ice Skating!

The Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation is excited to announce our December 2014 Club NF event – Club NF Goes Ice Skating! We know the holiday season can be a busy time, but hope you are able to join us on December 6 from 10 a.m. – 12:30 p.m. at the Steinberg Skating Rink in iconic Forest Park.

During this event, we will enjoy the social benefits of working with family and friends while participating in ice skating, an activity which increases muscular strength and aerobic strength.

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

Sharon and Elana Loftspring – Raising NF1 Awareness Together

Washington University NF Center mother and daughter, Sharon and Elana Loftspring, were recently featured in the Congressionally Directed Medical Research Program’s (CDMRP) Neurofibromatosis Research Program booklet. This mother-daughter team is actively involved in raising awareness of NF1 and offering support to other families who have loved ones living with NF1. Read more about this remarkable family’s experience in their own words below:

I recently added a few pages to my daughter’s scrapbook using paper designed with lemons. The phrase “turning lemons into lemonade” fits her perfectly. Elana has NF1. She was diagnosed when she was five, and the diagnosis has had a profound effect on both her life and mine.

I have been active in the NF Network, formerly Nf, Inc., on a local level and a national level for over 10 years. A representative from the organization greeted me at our first visit to an NF clinic, and provided resources to help me educate myself about the condition. Once I became involved, I was introduced to a network of parents, like myself, who were searching for answers, advocating for their children, and seeking support. Many of those parents have become dear friends over the years—my “lemonade.”

It was through that organization that I first learned about the NFRP. I joined a group of NF, Inc. individuals who visit Capitol Hill every year to advocate for research funding for NF. I distinctly remember getting a crash course on the DoD’s CDMRP and being so impressed by their implementation. The following year, I served as a consumer reviewer of the grant proposals submitted for NF research and have continued to do so since that time. The experience has been invaluable to me—not only is the process informative about the happenings in the medical research arena, but it is rewarding to know that my opinion is valued.

In 2009, Elana’s NF specialist discovered a brain tumor during a routine MRI. I immediately connected with my NF contacts and was led to the “right” specialists for our family through the Washington University NF Center and the NF Clinical Program at St. Louis Children’s Hospital. Her surgery was a success! Although it was traumatic for Elana in many respects, she managed to turn it into something positive. She began to make personalized care packages for other children affected by NF.

Here’s how Elana describes the project in her own words: “I knew what it was like to feel alone, and it felt awful! So I put a notice on the NF Network website and received emails from parents explaining their child’s troubles. Then I would respond by asking what the child liked to do, and would use that information to pick out things for the package. I would also include a letter from myself explaining that I, too, had NF, and that they were not alone. I ended up sending roughly 100 packages across the country.”

Last summer, Elana connected again with kids who have NF by attending Camp New Friends in Virginia. She loved it! Elana describes her camp experience this way: “I met nearly 65 other people with NF. I found what I had always wanted – people like me. Although our symptoms were unique, we were all the same. I understood exactly what the campers were feeling when they talked about their MRIs and medical tests, and they understood me. It felt great!”

Our connection to the NFRP came full circle this year when Elana came with me to advocate for continued funding of NF research. We were able to hear about the great strides that scientists are making in the field of NF research, and even clinical trials, and how the NFRP is keeping up the momentum. Elana used her voice to tell her story in the hopes that these programs will continue. Elana’s diagnosis has opened our eyes to other families affected by NF, to a dedicated scientific community that is committed to working toward finding a cure, and to connections with young people who remind Elana that she is not alone in this fight. As I said, Elana has truly transformed lemons into lemonade!

For more information regarding the Department of Defense’s Office of Congressionally Directed Medical Research Program (CDMRP) and their support for NF research, please visit their website cdmrp.army.mil.

Courtney’s Corner: Studying Gait, Balance & Hip Strength in Children with NF1

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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.

IMG_5759For 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

UPDATE: Clinical Research Studies at the Washington University NF Center – Fall 2014

Interested in how our current clinical studies are going?

NF1 Genome Project (NF1GP)NF 1 Genome Project- Washington University Neurofibromatosis Center/ St. Louis Children's Hospital- NF DNA Bank- NF

We have obtained 425 blood samples from individuals with NF1 and have already used some of the samples in new studies. These include a study looking at the differences in DNA between people with NF1 who develop brain tumors and people with NF1 who do not develop brain tumors as well as a study looking at how DNA might affect the number of dermal neurofibromas a person with NF1 develops.

NF1 Patient Registry Initiative (NPRI)NPRI- NF 1 Patient Registry Initiative- Washington University Neurofibromatosis Center/ St. Louis Children's Hospital- NF1

Over 1850 individuals with NF1 have registered and completed questionnaires for the NPRI. Individuals from all 50 states, the District of Columbia and 47 countries have participated. We are still recruiting! If you are interested in participating, or you know someone who is interested, please go HERE.

Social and Behavioral Health in NF1ASD logo 3

110 individuals have participated and data is being analyzed.

Hypotonia and Brain Tumors

11 children with NF1 have participated in this study. We are still recruiting! Children between the ages of 0 and 7 will be evaluated for hypotonia in clinic and those eligible will be approached to consider participating.

NF1 Brain Trust Project (NBTP)NF1 Brain Trust

15 individuals have donated skin samples to this study. We are still recruiting!

Maternal Folate Metabolism and Brain Tumors

60 families have completed this study and data is currently being analyzed.

Club NF Had a Great Time at FuNFest 2014!

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This past Saturday, a group of Washington University NF Center coordinators, St. Louis Children’s Hospital therapists and Club NF families traveled to Gatch Lake near Vandalia, Il to support FuNFest for the second year in a row. The 4th annual FuNFest, a fundraiser held by Amanda and Brian Walk, is a community event which includes games for kids, face painting, a bake sale and a silent and live auction. All money raised at this event is donated to fund research at the Washington University Neurofibromatosis (NF) Center.

This year, the Club NF team brought an obstacle course, balance boards and craft stations for the play-based therapy session at FuNFest. The rope jumps, balance beams and ball toss relay enabled attendees to hone their gross motor skills, and the balance boards proved to be a very popular challenge for both children and adults. Additionally, everyone strengthened their fine motor skills by making American flags, Halloween cards and Rainbow Loom bracelets at the craft stations.

IMG_5771As in previous years, Cow Patty Bingo was one of the highlights of FuNFest! The cow was led onto the field which had been marked with a numbered grid, and within approximately 30 minutes, the attendees who purchased the grid the cow dropped his ‘chip’ on won $1000!

We want to thank the Walk Family for allowing Club NF to join in on the fun!  It was a chilly, windy day but we had a great time working on our fine motor, gross motor and balancing skills with friends; new and old. We look forward to FuNFest 2015!

Club NF is a FREE, bimonthly, play-based therapy program for children with NF1 in kindergarten through 8th grade.  We participate in thoughtfully planned activities to help strengthen skills often delayed in children with NF1. 

Written by guest blogger, Kirsten Brouillet
Washington University NF Center Clinical Research Asst., Club NF Event Coordinator

Courtney’s Corner: Evaluating Your Child for Orthotics

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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.

SMO
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