Pediatric Orthotic Care: Empowering Children With Cerebral Palsy

For children with cerebral palsy (CP), every step, reach, or movement can be a triumph over the challenges posed by spasticity, poor coordination, or involuntary motions. These motor impairments, which vary widely in severity and presentation, can make even the simplest daily tasks a struggle. Pediatric orthotic interventions offer a lifeline, helping patients build strength, improve balance, and gain independence. But the journey to optimal outcomes requires more than just the right orthosis; it demands a collaborative effort between clinicians, children, and their caregivers. [caption id="attachment_276167" align="alignright" width="447"] towfiqu_barbhuyia/envato.com[/caption] To shed light on this critical aspect of care, experts share their insights on tailoring orthotic solutions to meet the unique needs of their young patients. Their collective experience highlights the importance of collaboration, innovation, and compassion in pediatric orthotic care. With 35 years of experience in O&P, including 19 years specializing in pediatric care at Children’s Healthcare of Atlanta, Karl Barner, CPO/L, has dedicated his career to improving the lives of children with cerebral palsy. Barner’s expertise is rooted in understanding the diverse manifestations of CP, which range from mild motor impairments to severe spasticity. Like other practitioners, he relies on the Gross Motor Function Classification System (GMFCS) to help classify severity in his patients. “Level 1 patients can ambulate independently and may not need orthoses to walk, but they can still benefit from interventions to prevent muscle contractures,” Barner explains. “On the other end of the spectrum, Level 5 patients are typically spastic quadriplegic and rely on wheelchairs. For them, orthotic care focuses on preventing worsening deformities.” The most treatable cases, Barner notes, fall within GMFCS Levels 2 to 4. “If we can get them to be functional ambulators, it helps with their whole health—improving bone strength, reducing contractures, and even boosting self-esteem,” he says. “I’ve worked with Level 4 patients and, through orthotic intervention and physical therapy, helped them progress to Level 3. It takes a lot of time and effort from both the patient and their parents, but it’s always exciting to see that improvement.” When selecting orthoses, Barner tailors his approach to each child’s unique needs. “For lower extremities, we often use supramalleolar orthoses (SMOs) for low-level control or ankle-foot orthoses (AFOs) for GMFCS Levels 2 and 3,” he says. “Proper shoes are key; what works for one patient might not work for another due to differences in heel height and construction.” For more complex cases, such as those involving spasticity in the abductors, Barner has achieved success with bulkier hip-knee-ankle-foot orthoses (HKAFOs) that prevent legs from crossing and reduce fall risks. His clinic also provides neuromuscular scoliosis orthoses for patients who have trunk weakness due to scoliosis or other structural problems. Barner emphasizes the importance of early intervention, noting that younger and lighter-weight patients often achieve better outcomes. However, controlling spasticity can complicate treatment. “Spasticity is involuntary and can overpower our goals with functional aids,” he explains. “Treatments like cryotherapy and Botox can help, but their effects are temporary, lasting only three to six months.” At Gillette Children’s, Minnesota, Kevin Koenig, CPO/L, has spent the past five and a half years working almost exclusively with children with CP. “Every patient is unique, and that’s what makes this work so rewarding,” he says. “CP is such a broad diagnosis, and it’s interesting and diverse because no two cases are the same.” Patient-centered care is the foundation for Koenig’s approach. “It’s not just the psychological aspect—it’s about building a brace for this patient, not just for a diagnosis,” he says. For a child with mild CP, Koenig might use an SMO to provide low-level control. But for a child with significant spasticity or instability, his team has seen success with KAFOs and even spinal orthoses to address scoliosis or kyphosis. For each patient, Koenig considers what an optimal gait would look like, what deviations are acceptable, and what can be realistically achieved. “It’s about balancing what’s ideal with what’s functional and tolerable for the child,” he says. One of the unique aspects of Koenig’s work is his involvement in selective dorsal rhizotomy (SDR) procedures, a specialized surgery performed at Gillette to manage severe spasticity. SDR is considered for patients who have been unable to manage spasticity through other means. It involves going into the spinal column and cauterizing nerve rootlets to improve range of motion. After surgery, patients stay at Gillette for weeks, working with physical and occupational therapists. “It’s an iterative process, monitoring range of motion, evaluating joints, and adjusting braces as they recover and progress,” Koenig says. Bridging Therapy and Orthotics [caption id="attachment_276168" align="alignright" width="570"] Photograph courtesy Gillette Children’s.[/caption] Brigid Driscoll, PT, DPT, CO/L, Ann & Robert H. Lurie Children’s Hospital of Chicago, brings a unique dual perspective to her work. Starting her career as a physical therapist in 1995, she later became an orthotist to combine her expertise in therapy with the ability to design and fit orthotic devices. “That transition allowed me to do so much more for my patients,” she says. “It was the missing link that helped me make them more independent.” Driscoll’s practice is distinguished by a comprehensive, family-centered approach. “When I assess a child, I look at their range, strength, postural control, and what limits their overall function,” she says. “But I also consider their environment, social situation, and emotional needs. What we ask of these families can be overwhelming, so it’s important to have the full picture.” Her team runs a unique serial casting program to address ankle and knee contractures. This program often serves as a precursor to orthotic intervention. “We change weekly casts to gain full range of motion, and from day one, we pair it with intensive physical therapy,” she says. “After casting, most kids transition to a solid ankle AFO, and as they advance their strength and motor skills, we modify their orthotic management to best match their developmental progress.” Driscoll emphasizes the importance of minimizing bracing when possible. “We want to build strength and balance reactions to optimize postural control, so they rely less on devices as they grow,” she explains. “It’s about dissecting the components—stabilizing distally with the brace and then addressing proximal weakness and alignment through therapy.” Lori Hansford, CO, has been working with children with CP for over three decades, first as part of Hanger Clinic and now as the clinic lead at Horizon Orthotic & Prosthetic Experience, Kansas. “I started as an office administrator, but I quickly realized I wanted to work directly with patients,” she says. Hansford became certified in 2000 and has focused on pediatrics ever since. Today, she operates the largest pediatric clinic in central Kansas. Practitioners know well that for many children, the devices they provide are the difference between mobility and immobility. “Without lower-extremity bracing, a lot of kids would be restricted to wheelchairs or unable to function at their fullest abilities,” Hansford says. AFOs are the most common starting point for Hansford. “These can range from carbons to hinged or solid-ankle designs, depending on the level of spasticity and contractures,” she says. For children with more severe impairments, she frequently uses KAFOs, and even some HKAFOs. “I’ve only recommended HKAFOs a handful of times because they’re so complex,” Hansford says. “But they can be life changing for the right patient.” Building Trust With Pediatric Patients Each of these practitioners knows firsthand that working with children requires a special kind of patience and creativity. Building trust with young patients is a cornerstone of their practices. “For kids under six, I try to warm up to them by playing or letting them explore the room,” Barner says. “If they’re shy, I let them take the lead. The goal is to make them comfortable before we even start talking about braces.” Koenig also aims to establish trust with patients early on by making them as comfortable as possible before talking to them about their feet or bracing. He focuses on engaging their interests unrelated to medical care. For example, if they are wearing a favorite character on their clothing, he tunes into that. “We are so hands-on, and I see that from about 18 months to three years old, they can get really nervous,” Koenig says. “Keeping them calm is important. Explaining what is going on in detail helps, too—like saying, ‘Okay, we’re drawing on your foot, and this is going to tickle but it is not going to hurt.’” Hansford takes a similar approach, using her Dr. Seuss–themed pediatric room to put children at ease. “I’ll sit on the floor and play with them, or we’ll read a book together,” she says. “I am a grandma now, and I talk to them like a grandma. I refuse to wear a white coat.” She also keeps a jar of suckers in her office, and her patients know they’ll get a reward at the end, which helps keep them engaged. Driscoll focuses on the importance of explaining the process to children in terms they can understand. “Kids are so smart and inquisitive,” she says. “When you explain what you’re doing, it builds trust and encourages them to be part of the process.” When it comes to addressing the challenges children face with peers, Barner says capitalizing on that inquisitive nature can be helpful, too. When young children are curious, there is an opportunity to educate them. He believes tools like bibliotherapy can be helpful in school environments. “There are not enough books out there,” Barner says. “But the ones that are out there help other children to understand and be kinder.” From the orthotist’s perspective, Barner says practitioners can help children adjust by involving them in designing their orthoses. “With all of the cool patterns available, we can help them to make it their own,” he adds. “I have heard a lot of positive feedback, especially from siblings who are ‘jealous’ of their sibling’s cool legs.” Tailoring Care to Age [caption id="attachment_276169" align="alignright" width="398"] Cultura Creative/stock.adobe.com[/caption] As children age, the approach shifts to involve them more directly in their care. “For kids in the seven-to-12 age range, I encourage them to take ownership of their devices—putting them on, taking them off, and understanding how they work,” Barner says. “By the time they’re teenagers, I focus on engaging them directly, with parents providing oversight.” For Hansford, letting the older kids participate in their appointments helps. “I let them help me with their sock cutting or something simple like that if they want to,” she says. In Driscoll’s practice, she never underestimates how social situations change as her patients get older. That often impacts their compliance level, too, and she says practitioners must strike the right balance. “We have to decide where compromises are needed based on what is socially important to a child at different times of their lives,” she adds. “If we can’t meet them halfway, it is more challenging to gain compliance.” She points out that rigorous therapy schedules where a child is being asked to do multiple exercises a day aren’t realistic as they try to also balance school schedules, homework, and activities. In her experience, if a child is asked to do therapy seven days per week, they are more likely to do it four to five days per week. Rather than having an hour a day solely dedicated to exercise, Driscoll encourages patients to fit in three to four exercises per day and incorporate them into other things they’re doing. “I tell them to maybe add exercise while playing a video game,” she says. “When your game ends, stop and do five minutes of exercise. If you keep it realistic, they won’t get overwhelmed or feel like they’re failing.” Ultimately, Driscoll says it’s important to be positive and encouraging even when children are not as compliant as their practitioners would like. When she encounters this in her own practice, she focuses on making sure patients understand that even if they’ve regressed, they can get back to the same level of mobility they were at previously. “You have to sit down and chart a plan,” she says, recalling a specific situation where a patient had a significant setback in progress. “He went through our program when he was eight and even learned to ski—it was incredible,” she says. “Then he came back in his late teens and walking was challenging and fatiguing. He and his family reported he had stopped exercising. At that point, we discussed it was time that he had to take ownership for his own therapy. It took a couple of visits for him to take the reins, but he did, and now he is keeping up and independently navigating his high school campus.” For many patients, discomfort plays a big role in compliance, regardless of age. Barner says it’s important to discuss the pain factor with patients. “We try to make sure they understand the difference between pain and pressure,” he says. “We talk with them and, based on their range of motion, may recommend a mild stretch versus a hard, fast stretch that could damage soft tissue or ligaments.” The Role of Family and Practitioner Collaboration Family involvement is key to the success of any orthotic intervention or supporting therapy. But that support is critical for children. Barner highlights the role caregivers can play in getting family meaningfully involved and invested. “We always include caregivers in the conversation and provide educational materials,” he says. “They need to know how to properly apply the orthosis, monitor for skin issues, and ensure the device is worn as prescribed. Without their involvement, things can go downhill quickly.” It’s important for caregiver involvement to start the moment the patient is evaluated, Hansford says. Families and therapists are encouraged to provide input on colors and patterns for the fabrication, and families are educated on proper footwear and socks. “We don’t want anyone to be surprised at delivery,” she says. “I encourage everyone involved to be present at device delivery. I make sure they understand how to stretch the child and properly don the brace. It’s not easy, but once families see the benefits, they’re more likely to follow through.” Driscoll takes a similar approach, emphasizing the importance of setting realistic expectations. “When you have a diagnosis of CP, the prescription of physical therapy and orthotics is not necessarily a linear process,” she explains. “Growth spurts can cause setbacks, so it’s important to prepare families for those moments and frame them as part of the journey, not a defeat.” Koenig also emphasizes the importance of involving families in the treatment process. While education is key, he says it has to be digestible. “I break it into shorter bursts during appointments—watching them walk, discussing what’s working, and addressing questions,” he says. “We also provide written and digital resources on how to choose shoes or put on braces. And even if the patient isn’t able to respond verbally, I always address them directly in these conversations—it’s their care, after all.” Collaboration between practitioners is also critical to successful treatment outcomes. Hansford’s approach is grounded in community and collaboration. She works closely with physical therapists and outpatient occupational therapists. “We set gradual goals as a team, starting with higher-grade stability bracing to get kids out of their chairs and moving,” she says. “Once they’re mobile, we reassess and adjust their orthoses to help them progress further.” Barner says an integrated approach makes a big difference in compliance, too. “PT and OT make a huge difference in wearability,” he says. “Having goals and discussions as we all work together is very important.” Driscoll says her patients benefit every day from the collaboration between her clinic’s team, where everyone works together across specialties. That synergy between physical therapy and orthotics was key in her decision to pursue both. “It was the missing link that I could just do so much more for my patients to make them independent.” For Hansford’s part, collaboration includes conducting clinics where she goes out and works side-by-side with physical therapists in her patients’ school districts to help improve continuity of care between the clinical setting and daily life. “Collaboration is crucial,” she says. “This includes the family, physician, physical and occupational therapist, as well as colleagues.” Measuring Success and Ensuring Progress Determining the real success of orthotic interventions involves a combination of clinical observation and patient feedback. “For lower-extremity devices, I start by assessing balance,” Barner says. “Can they stand without falling? Then I watch them ambulate, record their gait, and analyze it in slow motion.” [caption id="attachment_276170" align="alignright" width="531"] towfiqu_barbhuyia/envato.com[/caption] Hansford takes a hands-on approach, even visiting her patients out of the clinic. She often attends their sports activities to see how they’re performing in real-world settings. “It’s one thing to see them in the clinic, but it’s another to see them playing soccer or running around with their friends,” she says. “That’s where you really see the impact of the device, and you can identify where things may need to be changed or modified.” Driscoll monitors progress, in part, by tracking brace-wearing time. “We use devices like the iButton, which is a temperature monitoring device, but it can also log how long kids are wearing their braces,” she explains. “It’s not about watching over them, it’s about helping us to coach kids on their wearing schedules and better prescribe realistic wear times while still achieving the same functional gains.” Encouraging patients to visit as frequently as needed—even if it’s outside of their regularly scheduled cadence—helps Koenig to monitor progress. He says this is especially important for patients who have not had a brace before or are getting a new style of brace. “Some patients go down to our gait lab before and after a new brace, so that gives us objective data on what’s working and what isn’t.” What’s Ahead in Pediatric Interventions While orthotic technology has advanced significantly in recent years, each practitioner has an individual perspective on the most exciting innovations. Koenig highlights the potential of 3D printing. “It allows us to create braces that are thinner where they need to fit into shoes but thicker where support is needed,” he says. “It’s more precise, with fewer errors, and frankly, they look cooler. Kids who are hesitant about bracing often get excited when they hear about 3D printing.” Driscoll emphasizes the importance of continually refining existing designs. “Even though you may have something really good, you still need to look at it with a fresh eye to make it more user-friendly,” she says. “For example, we’ve made our AFOs lower profile while still providing the same stability.” Hansford, who describes herself as old school, values the hands-on aspect of her work. “I think the younger generation has a greater knowledge base of technology, and their patients will benefit from that,” she says. “But I still like to get that hands-on exposure with my patients and treat them face to face.” Barner is optimistic about advancements such as microprocessor-controlled KAFOs and functional electrical stimulation devices. “These innovations have great potential for the right patients,” he says. He also sees promise in new materials that offer dynamic return properties. “These can give some range of motion within the joint but can also limit it and control the speed of it depending on rigidity or flexibility of the material,” he explains. “So there is a balance with this material that could give resistive motion in the patient’s natural gait pattern, but that is still to be determined.” No matter what the future brings, these practitioners’ holistic, patient-centered approaches underscore the importance of collaboration, education, and innovation in pediatric orthotic care. Tara McMeekin is a writer and editor based in Colorado.

Pediatric Orthotic Care: Empowering Children With Cerebral Palsy

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Pediatric Orthotic Care: Empowering Children With Cerebral Palsy

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