Building Function, Building Hope: Orthotic Management of Pediatric Spinal Cord Injury

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By Morgan Stanfield

Life, as they say, can turn on a dime. One of the everyday pleasures in a child's life—a car trip, school football game, or bounce on a trampoline—can end with a disastrous snap. Partial or complete spinal cord injury (SCI) currently affects as many as 63,000 American children, according to the Christopher & Dana Reeve Foundation, with consequences that can begin with neural deficit or paralysis and extend to a lifetime of secondary medical problems.

Orthotists work on the front lines of SCI treatment, from applying halos in intensive care units to customizing functional electrical stimulation (FES) devices that can reroute interrupted neural pathways. Such clinicians' foresight must include not only the pediatric patient's current needs, but the possibilities of serious complications or—more hopefully—gradual improvement. This article offers a glimpse into some expert practitioners' own best practices for orthotic management of pediatric SCI.

Kids These Days

Childhood isn't what it used to be, and social change is affecting the landscape of pediatric SCI care. According to "The Changing Nature of Play: Implications for Pediatric Spinal Cord Injury," a 2007 study by Kristin Johnson, MS, and Sara Klaas, LSW, the average child watches 25 hours of television per week, not including screen time on computers. This means that clinicians may need to re-estimate how a child will spend his or her time, and then take advantage of the situation. For example, Brett Bostock, CO, of the Hanger Prosthetics & Othotics' central Phoenix, Arizona, office, encourages kids with SCI to play their video games or watch television while lying on their stomachs or while using a standing frame to build muscle and prevent hip contracture.

Ironically, at a time when obesity and sedentary lifestyles are rising, more children than ever are also participating in organized sports. Since 1981, participation in organized sports has risen more than 50 percent, according to Johnson and Klaas. In the experience of Garry Ogilvie, CO, FAAOP, Hanger's national orthotics specialist, the rise in organized sports has resulted in a rise in lumbar and lower-thoracic SCIs due to impact injuries.

"We're seeing incomplete spinal cord injuries that are affecting kids' lower limbs, their hips, their knees, and their feet," Ogilvie says. According to the Reeve Foundation, sports injuries are now the second most common cause of pediatric SCI, following car crashes.

Treatment Goals

No matter how a child is injured, it may be difficult to tell how the injury will move from its acute to its chronic phase. Ogilvie estimates that except in cases in which the spinal cord is severed, it takes a year or two for spinal nerve bruising to heal so that a patient's long-term functional ability can manifest.

"You always have to be looking forward," Ogilvie advises. "You have to figure out which type of injury you have now..., [and] you address what the concerns are today, but also the concerns of six months—and a year—from today."

According to a 2004 report by the Miami Project to Cure Paralysis, typical treatment goals include mitigating atrophy while decreasing risk of cardiovascular disease, diabetes, weight gain, respiratory problems, osteoporosis, and other skeletal problems. Among these, contracture control is one of the most important.

"You really have to get to kids early," says Marc Kaufman, CPO, LPO, who is a pediatric orthotics specialist and vice president and partner at Atlanta Prosthetics & Orthotics, Georgia. "If they start developing contractures, it's very difficult to manage. Get to them early and position them in a good plantargrade foot and ankle position...and make sure they're being followed by a physical therapist who is maintaining a good stretch program and that the parents follow up with that."

Clinicians who vigilantly head off contracture can give patients with incomplete SCI another major benefit—improved standing postures. Wise Young, MD, PhD, says in his 2008 article, "Ten Frequently Asked Questions Concerning Cure of Spinal Cord Injury," "Standing is a reflex, and balancing involves multiple reflexes. When a person stands, pressure on the soles of the feet activates extensor muscles. Of many approaches to rebuilding muscles, standing is the least costly and has extensively documented health benefits, including relief of skin pressure, reduction of constipation, improved bowel and bladder function, and better ability to straighten legs." According to Ogilvie, standing also stimulates young patients' growth plates and decreases atrophy. Both muscle and bone in denervated areas atrophy from disuse, and of the two, only muscle atrophy is reversible. According to Young, use of the drug bisphosphonate alendronate can help restore bone's mineral density, but it is not clear whether it also increases bone strength or reduces fracture risk. According to Young, these factors make both mechanical loading and keeping a moderate amount of spasticity all the more important.

Walk and Roll

As for the mobility devices themselves, Ogilvie recommends that orthotists think of the devices not as potential "curatives," but as useful transportation devices whose appropriateness should be regularly reevaluated and combined as needed. For example, even children using wheelchairs may benefit from wearing AFOs and FES devices.

"A lot of people do not understand that you are protecting the child's legs when you put a set of AFOs on a kid in a wheelchair," Ogilve says. "It's going to give them a lot of power and free up their arms to do more...and provide some upright balance, function, and support in the sense that they have something stable to push off from."

While FES devices don't offer protection, they can provide similar stability, and can be valuable for children as young as ten. According to Reese Evans, CO, who works with Bostock, though the cost of an FES device can initially be challenging, "those things will last a lot longer for a growing kid than an AFO would, and they increase circulation, so there is a whole slew of positive side effects." Evans and Bostock note that such devices can last years; they currently have a patient who has worn the same WalkAide for more than four years.

No matter which devices kids are using, if you're mixing and matching, Kaufman suggests making life easier on parents by combining devices. "If kids are using, say, a KAFO for standing and a little walking but a chair the rest of the time, to prevent having to use multiple devices, we use a quick-release or pin-release system on the KAFO so that they can go from a KAFO to an AFO without having to actually remove the device or have separate devices," he says.

Motivation can be another major factor in device choice. Among all O&P devices, use of RGOs may depend most upon psychological factors and require a major commitment from patients. However, Evans says that when he has used RGOs, sometimes "it was pretty strictly a clinical decision depending on [the patient's] muscle strength and their abilities...but I am constantly surprised at how much stronger people are...when we try them. I've got to see what they can do, rather than just read muscle grades."

Clinician motivation is another essential factor in RGO use. Ogilvie says that RGOs, "from the orthotists' side, are about fine-tuning and aligning the systems correctly. That's the point that many orthotists miss—they take impressions and send them off to a manufacturer, and the manufacturer fabricates the device and sends it back to them. At that point, our work is just beginning. My first goal is to allow the patient to stand hands free—that is the key factor because none of these patients will ambulate until we have them standing hands free." He also notes that the need for a special alignment method can make adjusting RGOs tricky, and that it shouldn't stop clinicians from using the devices. "Work from the floor up to the hip joint," he advises, "and from there, once you get that alignment, then adjust the trunk angle so the patient is able to balance. Get the hip joint over the center of the foot, then...adjust the trunk to get back to a more normal standing alignment." Ogilvie adds that RGOs have a much greater chance of success if paired with stance-control KAFOs, and if the clinician has attended the manufacturer's training courses.

Mind and Body

Psychological issues are a major factor when working with children—especially those who have SCI.

"Close communication and support of the child and family are essential throughout the pre-hospital and hospital phases," write Janice S. Hayes, PhD, RN, and Trish Arriola, RN, in an article titled, "Pediatric Spinal Injuries: Care of the Child With a Spinal Injury," at MedscapeTODAY. "Discharge planning must include the entire family so that they are prepared and able to provide both the physical and psychological care that is needed."

Evans says, "I generally try to connect with parents and the family right away and let them know if they don't already [know] about what we are going to be doing...step by step." Conversely, this also gives him a chance to learn about the family's current knowledge and beliefs about their child's condition.

Kaufman emphasizes the importance of a team approach in managing pediatric SCI. "The physical therapist, orthopedist, and orthotist need to have a relationship where they can communicate often to discuss the changes that are occurring with the patient," he says. "There are physicians who believe that if a patient is paralyzed, then he will be confined to a wheelchair. If I get to see these patients, I explain that they may choose to use a wheelchair, however having the option to stand and walk, if possible, has so many medical and psychological benefits. These kids and families are suffering so much from an acquired injury that our job is to provide support and encouragement along with the option for whatever level they want to get to."

On the positive side, Evans says that children adapt quickly to even complete paralysis and are eager to get back to moving at whatever level is possible for them. "Most of the kids that we see are up for a challenge.... You have to give them the opportunity to get up and go. We had a little girl recently in bilaterial stance controls, and we didn't think she was a candidate for them at first. After we fit her, she progressed out of them in six months. Without that challenge, she would have been in her chair."

In fact, pediatric patients themselves may name their own best challenges. "A lot of the time, the kids lead you," Ogilvie says. "They say, 'I want to be able to walk across the stage at graduation.'" For children whose goals are harder to parse out, Bostock adds, "I just talk to the kids about what they like to do.... Another patient, we couldn't get him motivated to do anything—he was happy just being in a little scooter—but recently we found out he likes to cook, so we challenged him that he needs to get up on prosthetic legs so he can stand in the kitchen and cook."

Enjoying the Work

Knowing how to work with children clinically is a learned art, Kaufman emphasizes, and advises that clinicians who don't specialize in pediatrics seriously consider referring kids to someone who does.

"We see quite a few patients who have been to practitioners who don't specialize in kids," he says. "A lot of times these kids will get a device and it doesn't fit properly, and then their insurance won't pay for another set—sometimes for a year or more." He says that children's unique issues require special designs and considerations. For example, kids' fast growth means that many orthoses, such as RGOs and or HKAFOs, should be lined and include growth bars. Childrens' changing body shapes also mean that trimlines need to be carefully planned. "It's more important for the clinician who mostly sees the adult population to pay really good attention to which deformities may arise...and that the device is addressing them and any tone issues. You should consider using inner boots or R-wraps to contain everything."

No matter how much experience with pediatrics you have, Ogilvie asserts, "I think the key is to enjoy working with kids, to enjoy the challenges they will present to you. The kids are the inspirational part. Our job is to meet their challenge—to do whatever they are pushing us to do. Once we start thinking about how much of a challenge we are giving these kids and how much of a challenge the kids give us, it's time to enjoy that and embrace that."

Morgan Stanfield can be reached at

Stimulating New Technology

Ronald Triolo, PhD, is a senior career research scientist at the Louis Stokes Cleveland Department of Veterans Affairs Medical Center, Ohio, where he directs the Advanced Platform Technology (APT) center, a VA Rehabilitation Research and Development (VARR&D) center of excellence. He is also a professor of orthopedics and biomedical engineering at Case Western Reserve University, Cleveland. He told The O&P EDGE about some projects he is working on that have already demonstrated major potential benefits for people with spinal cord injury (SCI), especially children.

Much of Triolo's work combines functional electrical stimulation (FES) devices with orthoses. The FES devices his teams use, some of which include implanted electrodes, can access muscles that aren't always reachable with surface stimulation. Triolo says, "We're able to stiffen the knees, hips, and trunk and provide enough power to raise people out of their wheelchairs and into a standing position. And we've been able to swing the limbs forward and generate stepping motions." Such devices may be particularly effective for children, Triolo says, because "taller and heavier people are asking those small number of [FES-stimulated] muscles to do more work."

FES for Standing and Walking

The Case Western Reserve University/Veterans Affairs (CWRU/VA) implanted standing neuroprosthesis was developed by teams that included Triolo at the FES Center, another VARR&D center of excellence in Cleveland. Using AFOs and eight implanted electrodes, it has allowed test users with paralysis to stand while using a walker for balance. The electrodes are set into the quadriceps, spinal extensors, gluteus maximus, and either the hamstrings or adductor magnus. When activated, users' legs extend, and the trunk is pulled back and centered over the pelvis, creating a standing posture. Triolo says, "All balance is done by the arms against a walker or other support. People using it can put, on average, up to 85 percent...of their weight on their legs, which means that they can release one hand to reach high objects that they couldn't reach from their wheelchair." Triolo's teams are now working on a 16-electrode version that would also target ankle and hip muscles for improved balance.

The Hybrid Orthosis

The Hybrid Orthosis is an experimental device designed jointly by the APT and FES Centers to give better ambulation to people with SCI or other paralyzing conditions. It includes several components. The first is the Variable Rigidity TLSO that, Triolo says, is "a standard thoracic jacket that has the midsection removed and in its place is a stack of polymer discs that were inspired by the spine. Control cables run through the stack, and when a small actuator pulls on the cable, it compresses the stack and locks the trunk in place. When the actuator releases the cable, it allows movement of the lumbar spine, so that a person could bend to the side or forward." It also includes an RGO whose hips are not coupled permanently in the standard 1:1 ratio. This allows stride length to vary and even permits one leg to remain extended while the other hip flexes, which may enable stair ascent and descent. Finally, it includes optional FES to propel the limbs, and orthoses to lock the knees when needed.

Postural Control for Wheelchair Users

According to a Shriners Hospitals for Children team led by Mitell Sison-Williamson, MS, some studies show that 100 percent of wheelchair users who received their SCI before age 11 developed paralytic scoliosis, which can have dangerous effects on skin integrity, range of motion (ROM), and activities of daily living (ADL). In feasibility trials, Triolo's teams have been able to correct non-fixed skeletal misalignments in wheelchair users by applying FES to stiffen the core trunk and hip muscles. Thanks to their improved posture, he says, trial volunteers can better control objects in the environment, resist unexpected disturbances, propel their manual wheelchairs more efficiently, improve lung capacity by as much as 20 percent, assume healthier sitting positions, and reduce soft-tissue pressures.

This project, which Triolo says he is "very excited about," is still in early stages. "We can lock people into different postures by stimulating the muscles at different levels, but...if someone wanted to move from one position to another, they would have to manually change the way the muscles are activated.... But even so, this first-generation system still has huge implications."

Triolo and his teams are also seeking avenues for commercialization. Triolo estimates that approximately 50,000 Americans with SCI, plus thousands more who live with stroke-based hemiplegia, MS, traumatic head injury, or other paralyzing disorders would qualify for the devices. "From a business perspective, it's a small market...so it's a big financial risk for the potential size of the return," he says. "But you can't argue that it wouldn't be a huge return of function and general well-being for people who are paralyzed."

—Morgan Stanfield