Stories about: cerebral palsy

Why can’t a walker be more like an all-terrain vehicle?

Child innovator Sadie with Amazing Curb Climber
Photo: Patrick McCallum

Sadie McCallum’s own life led her to become an inventor. She’s 9, has cerebral palsy, for which she’s seen at Boston Children’s Hospital, and relies on a walker to get around. “It would be SO much easier if my walker was more like an all-terrain vehicle and could go over curbs or stairs,” she says.

This year, in third grade, Sadie took part in her school’s annual Invention Convention and designed and built the Amazing Curb Climber. She sketched the design, and her family helped her with the planning, drilling, sawing and assembly. The end product combined two of Sadie’s old walkers and six lawn mower wheels (three on either side) to create an all-terrain design, plus two smaller wheels in back. Her dad helped build a portable curb for testing and demo purposes.

The invention won first place for Best Use of a Wheel and second place for Kids’ Choice. Sadie went on to the regional Invention Convention, where she took the first place for the Special Needs Award as well as the Microsoft Technology Award.

Read Sadie’s post on our sister blog, Thriving.

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Science seen: Mapping touch perception in cerebral palsy

sensory brain mapping in cerebral palsy

Cerebral palsy (CP) is the most common motor disability of childhood. The brain injury causing CP disrupts touch perception, a key component of motor function. In this brain image from a child with CP (click to enlarge), the blue lines show nerve fibers going to the sensory cortex. The colored cubes at the top represent the parts of the sensory cortex receiving touch signals from the thumb (red cube), middle finger (blue) and little finger (green). An injury in the right side of the brain (dark area) has reduced the number of nerve fibers on that side, reducing touch sensation in the left hand and resulting in weakness.

Christos Papadelis, PhD, of Boston Children’s Hospital’s Division of Newborn Medicine hopes to use such sensory mapping information to develop better rehabilitation therapies. P. Ellen Grant, MD, director of the Fetal-Neonatal Neuroimaging and Developmental Science Center, Brian Snyder, MD, of the Cerebral Palsy Program and research assistant Madelyn Rubenstein are part of the team.

 

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Innovation inspiration: From Shakira to Toys ‘R’ Us

A fleet of toddlers get ready to race in their Go Baby Go cars, customized by therapists and parents to provide disabled children with mobility and help them strengthen weak muscles.
Start your engines: A fleet of GoBabyGo cars, customized by therapists and parents to give disabled children mobility and help strengthen weak muscles. (Courtesy Cole Galloway)
TEDMED2014 focused on a powerful theme: unlocking imagination in service of health and medicine. Speaker after speaker shared tales of imagination, inspiration and innovation. Here are a few of our favorites:

$100 plastic car stands in for $25,000 power wheelchair

In the first (and likely only) National Institutes of Health-funded shopping spree at Toys R’ Us, Cole Galloway, director of the Pediatric Mobility Lab at the University of Delaware, and crew stocked up on pint-sized riding toys.

Galloway’s quest was to facilitate independence and mobility among disabled children from the age of six months and older and offer a low-tech solution during the five-year wait in the United States for a $25,000 power pediatric wheelchair.

The hackers jerry-rigged the toys with pool noodles, PVC pipe and switches, reconfiguring them as mobile rehabilitation devices to promote functional skills among kids with special needs.

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An IOTA of thumb control for children with cerebral palsy, hemiplegia, stroke

This child-sized device assists children with thumb movements while giving them sensory and visual feedback.
This child-sized device assists children with thumb movements while giving them sensory and visual feedback. (Image: Wyss Institute, Harvard University)
Our ability to use the thumb as an opposable digit is a critical part of what sets us apart as a species. “That’s how you’re holding a pen,” Leia Stirling, PhD, a senior staff engineer at the Wyss Institute for Biologically Inspired Engineering told me recently as we talked about the Wyss’ latest collaboration with Boston Children’s Hospital. “That’s how you hold your phone; that’s how you open a door; that’s what makes us unique.”

It’s also an ability that children who have suffered a stroke or have cerebral palsy or hemiplegia (paralysis on one side of the body) can lose or fail to develop in the first place.

Stirling, along with Hani Sallum, MS, and Annette Correia, OT, in Boston Children’s departments of Physical and Occupational Therapy, are the architects of a robotic device that may improve functional hand use. The device assists children with muscle movements, using small motors called “actuators” placed over the hand joints, while giving them sensory and visual feedback. It’s called the Isolated Orthosis for Thumb Actuation, or IOTA.

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Children with medical complexity: Caught in a political and economic crossfire

What will happen to medically complex children if insurance coverage is reduced and fewer pediatricians are trained to care for them? (Image: Wikimedia Commons)

Jay Berry, MD, MPH, is a pediatrician and hospitalist in the Complex Care Service at Boston Children’s Hospital. His most recent research appears in the JAMA Pediatrics, accompanied by editorials on the findings’ implications for health care and residency training. Berry further discusses its implications in this podcast.

My first encounter with a children’s hospital was as a first grader in 1980, when my 5-year-old cousin was diagnosed with cancer. Although her family was challenged to afford her cancer treatments, St. Jude Children’s Hospital in Memphis welcomed her and treated her cancer into remission. I remember my parents saying, “Everybody in that hospital loves children. No child is turned away.”

In 1997, walking into the Children’s Hospital of Alabama as a medical student, I felt the same sense of hope and courage. Everyone on the staff believed that they could make a difference in the lives of the children and families, despite the horrific illnesses that many of the children endured. I knew, immediately, that I wanted to become a pediatrician and to learn how to care for sick children.

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A rising tide of neurologic impairment: Where’s the medical home for these children?

Many doctors feel unprepared to care for children with neurologic impairment. (Photo: Lindsey Hoshaw)

Jay Berry, MD, MPH, shown here with patient Kyler Quelch, is a pediatrician and hospitalist in the Complex Care Service at Children’s Hospital Boston. He leads the multi-institutional Complex Care Quality Improvement Research Collaborative.

As a general pediatrician, albeit one with experience in complex care, I find it extremely challenging to take care of children with neurologic impairment. A child’s nervous system can be “broken” for many reasons: a congenital brain or spinal cord malformation, severe head or neck trauma, a genetic condition or, like an increasing number of children, being born prematurely.

Most of the time, we can’t “fix” a broken nervous system. We can only try to support the body functions that are impaired as a result. Functions we take for granted: breathing, eating and digesting, moving, talking. We don’t have a lot of scientific evidence to guide us when doing this,

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Serendipity in science: Collaborating to build robotic clothing for brain-damaged children

A sequence of motion frames of a normally kicking baby's legs (shown in blue and green), illustrating changing joint angles at the hip and knee.

Countless scientific epiphanies never leave the bench – unless there’s the kind of serendipitous encounter that set Children’s Hospital Boston psychologist Gene Goldfield on a path he never expected to follow.

One in eight babies are born prematurely, putting them at greater risk for cerebral palsy, an inability to fully control their muscles. Goldfield saw these children being wheeled around the hospital, and was convinced that they did not have to be wheelchair-bound.

During early infancy, he knew, the developing brain naturally undergoes a rewiring of its circuits, including those that control the muscles. Could some type of early intervention encourage more typical motor development by replacing damaged circuits with more functional connections?

At Children’s Innovators’ Forum last week, Goldfield discussed his envisioned solution: the use of programmable robots

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Does it get better? Surgical outcomes in children with cerebral palsy

Children with severe cerebral palsy sometimes need surgery to help their hips and spine. But do these operations actually improve quality-of-life? Rachel DiFazio would like to know. (PaulEisenberg/Flickr)

Children with cerebral palsy (CP), the most common form of physical disability in children, all experience at least some difficulties in communication and movement. Those with the most severe forms of CP sometimes undergo reconstructive surgery on their hips and spine to correct dislocations or scoliosis. But do these operations actually improve quality of life?

“I’ve taken care of children with cerebral palsy for 21 years, and I’ve always wondered what the outcomes were of the surgeries,” says Rachel DiFazio, a nurse practitioner with the CP Program at Children’s Hospital Boston. “We have a lot of X-ray data and range-of-motion data, but we don’t really know if it gets any easier to take care of these children, whether life gets a little bit easier after the surgery, and in what ways.”

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My first “frequent flyer”

Photo: Lars Plougmann/Flickr

Jay Berry, MD, MPH, is a pediatrician and hospitalist in the Complex Care Service at Children’s Hospital Boston. He leads the multi-institutional Complex Care Quality Improvement Research Collaborative (CC-QIRC). This post is first of a three-part series.

Everywhere you turn these days, there’s an airline, grocery store or coffee shop pushing a “frequent flyer” or “rewards” program. You know the gist – the more money you give these businesses, the more discounts they give back to you and the more money you “save.” In theory, these programs are win-win: customers like frequenting the same business; businesses love holding onto satisfied customers.

But when I was a medical student, and overheard a nurse call my patient a “frequent flyer,” I wondered, “Who gets the ‘reward’ in that frequent flyer deal?” I hoped this child, a 4-year-old boy with cerebral palsy, was benefiting from being admitted over and over again.

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Kids with cerebral palsy test the latest touchscreen technology

Last month, pediatric specialists from across town visited Children’s Hospital Boston for demos of a technology designed to motivate children with cerebral palsy (CP) to do their occupational therapy. Created by a multidisciplinary team from Spaulding Rehabilitation Hospital (SRH) and the Harvard School of Engineering and Applied Sciences (SEAS), the system uses a three-foot wide tabletop touchscreen donated by Microsoft Surface–imagine a giant iPad.

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