Background
I have been exploring the option of using LSVT BIG® with kids for a few years now. Three years ago, a mom reached out to me about her teenage daughter with progressive ataxia. She had heard about LSVT BIG and was curious if this was something that could help her daughter. I had only used it with individuals that had Parkinson disease but I explained the rationale of the program and she wanted to give it a try. She made gains despite having a progressive condition.
I pursued additional referrals from pediatricians since that time and had a lot of interest but just got my first official referral this past summer. Then I found out it was a 4-year-old boy with Down Syndrome! I panicked about the prospects of working with such a young child but I had been working so hard to get a referral, I didn’t want to close the door.
I reached out to mom and she was so motivated to try something new for her son after years and hundreds of visits of traditional therapy. We set him up for participation in both LSVT BIG and LSVT LOUD during the same month, 2 hours of 1:1 therapy per day.
Beginning Treatment
The first day when he arrived with his family, I realized I was wholly unprepared. I had not treated a young child for movement deficits in my entire 22 your career as an occupational therapist. I had consulted with my pediatric OT colleague prior to the visit however I was utilizing only developmental milestone charts to assist my understanding of where he should be functionally. I did not have a standardized outcome measure ready and I wasn’t sure I would even be able to get him to follow any directions even if I did.
I pulled out the LSVT BIG functional tasks recording form and had mom and dad give me a list of 10 things they wanted their son to be able to do. With a list made, I now had to figure out how was I going to facilitate this! I realized that my room was full of things for adults that did not interest him at all. After the session, I felt like a new grad, overwhelmed, incapable, uncertain… but the parents were so motivated, I had to find a way to utilize what I knew about the potential of LSVT BIG.
Recruiting Resources to Improve Treatment
I further consulted with the pediatric team in my outpatient clinic. I quickly got full orientation to the toy room. I was on the hunt for things that made noise, would facilitate interest, and would be at his age and ability level. The next morning, I loaded up my bin of toys to take to the room and I had found some winners and some losers. Lots of trial and error!
The pediatric team supervisor (PT) joined me to take a look at his gross motor skills, mobility, and the AFOs he was wearing. She told me that we should work with the AFO’s off, bare feet, so he could feel his environment through his feet and begin to activate his whole body better. She had me get right in there and use some hand over hand techniques, place the toys where I wanted him to reach and have him sit on all different types of surfaces, both stable and unstable.
This session went much smoother and I started to see how I was going to be able to shape my treatments to complete the LSVT BIG maximal daily exercises, functional component tasks, hierarchy, and big walking.
I developed a homework sheet for mom that mirrored what I used for my adults, with the goal of 6 to 8 repetitions in the clinic and at least three repetitions in the home program. Mom was extremely motivated and brought the homework checkoff sheet completed every day.
He started to know the order of the exercises and I was able to facilitate significantly more reps. We started on a solid sitting surface and progressed to a small peanut ball or bolster depending on his choices each day. Initially I was supporting his body on the mobile challenging surface with max assist.
For floor to ceiling we used a version of “head, shoulders, knees, and toes”, showing his hands with reach to a rattle type ball and touching named body parts with the ball. I facilitated reaching across midline and twisting to reach behind. We utilized a turtle stepping stone for stepping forward and facilitated standing on one leg and reaching for suction toys on the mirror.
I came up with a technique along the handrail on the wall for retrieving items sitting on top of the railing as he walked side stepping on the balance beam. We did back stepping with hand over hand on a dowel, which eventually turned into him grabbing the dowel and knowing exactly what to do while we sang “the wheels on the bus”.
I was able to facilitate the swinging/rock and reach with sensory tubes pulling them both from the front and from the back. Coming up with ways to get him interested in these movements was a challenge but turned out to produce amazing results.
Results
The gains reported by mom were so exciting! He was able to crawl out of the crib, jump on the couch and in crib with a two hand hold. Stand on one leg to reach something on the counter or on the “touch screen” TV. He was grabbing the railing in the community and at home with two hands before going up or down the stairs and sidestepping.
He was demonstrating more activation of the core by holding himself up in the life jacket when swimming, and sitting balanced on the rolling chair for school pictures without help. Plus, he began using an adult fork and loading it for self-feeding for the duration of the meal.
Doing our therapy treatments with his AFO’s off dramatically increased the activation of his feet and allowed for a reduction in inversion bilaterally. This allowed for a significant increase in his pace of his running and a very clear improvement in jumping and kicking. Some of the secondary benefits included an increase in attention span for following directions and significantly more voicing and imitating sounds.
Our Down Syndrome LSVT Success Story (Part 1): The Parent Perspective
LSVT Global recently released the Online LSVT LOUD for KIDS® Training and Certification Course for speech therapists who are interested in the pediatric application of the LSVT LOUD treatment. LSVT BIG has not yet expanded to a pediatric course, however, clinically physical and occupational therapists have been trying the treatment with some of their pediatric clients. This is one example of those success stories.
To learn more about application of LSVT LOUD to pediatrics, visit our Pediatric Resource page!