Safety and effectiveness of ethanol neurolysis with and without onabotulinumtoxinA in children with cerebral palsy.

BACKGROUND: OnabotulinumtoxinA is commonly used to relieve spasticity in children with neurologic disorders. Ethanol neurolysis may be used to target more muscles but is less well studied, especially in pediatrics. OBJECTIVE: To determine the safety and effectiveness of ethanol neurolysis with onabotulinumtoxinA injections compared to only onabotulinumtoxinA injections for the treatment of spasticity in children with cerebral palsy. DESIGN: Prospective cohort study including patients with cerebral palsy receiving onabotulinumtoxinA and/or ethanol neurolysis from June 2020 to June 2021. SETTING: Outpatient physiatry clinic. PATIENTS: A total of 167 children with cerebral palsy not undergoing other treatments during injection period. INTERVENTIONS: Injection with either onabotulinumtoxinA only (112 children) or a combination of ethanol and onabotulinumtoxinA injections (55 children) using both ultrasound guidance and electrical stimulation. MAIN OUTCOME MEASURES: A post-procedure evaluation at 2 weeks after injection documented any adverse effects experienced by the child and perceived magnitude of improvement using an ordinal scale from 1 to 5. Multiple linear regression was used to identify and control for covariates including Gross Motor Function Classification System, gender, age, weight, ethnicity, race, and dosage. RESULTS: Only weight was identified as a confounding factor. When controlled for weight, combined onabotulinumtoxinA and ethanol injections had a greater magnitude of improvement (3.78/5) compared with onabotulinumtoxinA injections alone (3.44/5), a difference of 0.34 points on the rating scale (95% confidence interval: 0.01-0.69; p = .045). However, the difference was not clinically significant. One patient in the onabotulinumtoxinA-only group and two patients in the combined onabotulinumtoxinA and ethanol group reported mild, self-limiting adverse effects. CONCLUSION: Ethanol neurolysis under ultrasound and electrical stimulation guidance may be a safe and effective treatment for children with cerebral palsy that allows more spastic muscles to be treated than onabotulinumtoxinA alone.

Volunteering among youth with disabilities: a population-based study.

PURPOSE: The benefits of volunteering among youth are well documented. However, research is limited on volunteering among youth with disabilities. This study examined prevalence and associations of volunteering among youth with disabilities. METHODS: We analyzed data from the 2016-2018 National Survey of Children's Health (n= 42 204). Prevalence estimates were calculated for sociodemographic and household factors, volunteering, and functional limitations. Bivariate and multivariable associations between participation in volunteering activities and variables of interest were assessed. RESULTS: Youth with disabilities had lower prevalence of volunteering compared to youth without disabilities (48.4% vs. 55.6%). Youth with hearing and vision impairments had the lowest prevalence of volunteering (2.1% and 2.5%, respectively). Correlates of volunteering included health status (adjusted odds ratios (aOR)=1.81; 95% confidence interval (CI) 1.13-2.91), sex, and age. CONCLUSIONS: Our study found low prevalence of volunteering among youth with disabilities. Since youth with disabilities face unique barriers to social inclusion, it is important to identify and reduce the barriers to participation among this group. Volunteer opportunities in the community should be designed to be both environmentally and programmatically accessible to youth with disabilities. These efforts should include accommodations and other support so that participants can fully experience all of the benefits of volunteering.Implications for rehabilitationOur multiyear nationally representative study found low prevalence of volunteering among youth with disabilities, particularly those with hearing and vision impairments.Since youth with disabilities face unique barriers to social inclusion, it is important to identify and reduce the barriers to participation among this group.Our findings support the need for environmentally and programmatically accessible volunteering opportunities for youth with disabilities.These efforts should include accommodations and other support so that participants can fully experience all of the benefits of volunteering.

Variations in Healthcare Transition Preparation Among Youth With Chronic Conditions.

INTRODUCTION: Youth with special healthcare needs have low rates of healthcare transition services, which can affect lifelong functioning and quality of life. This study examines the variations in receipt of healthcare transition services among youth with special healthcare needs. METHODS: Data from the 2016-2018 National Survey of Children's Health (N=102,341) were analyzed in 2021. Receipt of healthcare transition services by youth with select health conditions was compared with youth with other special healthcare needs. Bivariate and multivariable analyses assessed the associations between the receipt of healthcare transition services, sociodemographic characteristics, and health conditions. RESULTS: Among youth with special healthcare needs, the prevalence of receiving healthcare transition services was lowest among youth with speech or other language disorders (8.5%), intellectual disabilities (9.4%), and autism spectrum disorder (11.1%). Low prevalence of receiving healthcare transition services was also observed for youth with developmental delays (12.6%), learning disabilities (14.2%), and behavior or conduct problems (15.5%). Youth with developmental delays (AOR=0.70, 95% CI=0.52, 0.95), intellectual disabilities (AOR=0.45, 95% CI=0.26, 0.78), learning disabilities (AOR=0.77, 95% CI=0.60, 0.99), autism spectrum disorder (AOR=0.60, 95% CI=0.41, 0.86), and speech or other language disorders (AOR=0.48, 95% CI=0.32, 0.72) had lower odds of receiving healthcare transition services than youth with other special healthcare needs. CONCLUSIONS: Findings suggest that the receipt of healthcare transition services varies substantially by the type of chronic health condition and highlight the need for increased healthcare transition services for youth with special healthcare needs, especially for youth with neurodevelopmental disabilities and speech or other language disorders.

Feasibility of a real-time pattern-based kinematic feedback system for gait retraining in pediatric cerebral palsy.

INTRODUCTION: Visual biofeedback of lower extremity kinematics has the potential to enhance retraining of pathological gait patterns. We describe a system that uses wearable inertial measurement units to provide kinematic feedback on error measures generated during periods of gait in which the knee is predominantly extended ('extension period') and flexed ('flexion period'). METHODS: We describe the principles of operation of the system, a validation study on the inertial measurement unit derived knee flexion angle on which the system is based, and a feasibility study to assess the ability of a child with cerebral palsy to modify a gait deviation (decreased swing phase knee flexion) in response to the feedback. RESULTS: The validation study demonstrated strong convergent validity with an independent measurement of knee flexion angle. The gait pattern observed during training with the system exhibited increased flexion in the flexion period with maintenance of appropriate extension in the extension period. CONCLUSIONS: Inertial measurement units can provide robust feedback during gait training. A child with cerebral palsy was able to interpret the novel two phase visual feedback and respond with rapid gait adaptation in a single training session. With further development, the system has the potential to support clinical retraining of deviated gait patterns.

Children with Cerebral Palsy and Unmet Need for Care Coordination.

OBJECTIVE: To examine the physical and functional health of children with cerebral palsy (CP) and determine the prevalence and correlates of unmet need for health care coordination among this population. METHODS: We analyzed data from the 2016 to 2018 National Survey of Children's Health (n = 102,341). Bivariate and multivariable analyses were conducted to compare the prevalence of chronic health conditions, functional disabilities, and care coordination among children with and without CP. Multivariable logistic regression models were used to estimate the adjusted odds ratio of comorbid conditions, functional disabilities, and unmet need for care coordination. Associations between select sociodemographic factors and unmet need for care coordination were assessed. RESULTS: Children with CP had significantly higher prevalence of all the comorbid conditions and functional disabilities examined. The most prevalent health conditions among children with CP were allergies (34.2%), anxiety (26.5%), and asthma (25.1%). Notably, children with CP had higher odds of autism spectrum disorder (adjusted odds ratio [aOR] = 2.97; 95% confidence interval [CI] 1.40-6.30) and mental health conditions (aOR = 3.65; 95% CI 2.15-6.21). More than half (53.8%) of children with CP had unmet need for care coordination. They also had higher odds of unmet need for care coordination than children without CP (aOR = 2.63; 95% CI 1.69-4.10). CONCLUSION: Children with CP have high prevalence of chronic health conditions and are also more likely to have unmet need for care coordination. Given the complexity of CP, our study supports the need for robust efforts to ensure that all children with CP have effective care coordination.

Reduction of self-mutilating behavior and improved oromotor function in a patient with Lesch-Nyhan syndrome following botulinum toxin injection: A case report.

Lesch-Nyhan syndrome is a genetic metabolic disorder often involving dystonia and self-mutilating behavior. This case report describes a 13-year-old boy with Lesch-Nyhan syndrome and self-mutilating behavior who received botulinum toxin injections to his bilateral masseter muscles after failing multiple other treatments. Following injections, the patient had reduction in self-biting, along with improvements in speech, mastication and feeding observed in speech therapy. Botulinum toxin injections to the masseters may help to improve oromotor function and reduce self-mutilating behaviors in children with Lesch-Nyhan syndrome who have failed more conservative treatments, providing opportunity for improved functional status and patient safety. Further investigation is indicated to establish optimal dosing. Additionally, the mechanism for the reduction of self-mutilating behavior is unclear and justifies additional investigation.

Kinetic Gait Changes after Robotic Exoskeleton Training in Adolescents and Young Adults with Acquired Brain Injury.

BACKGROUND: Acquired brain injury (ABI) is one of the leading causes of motor deficits in children and adults and often results in motor control and balance impairments. Motor deficits include abnormal loading and unloading, increased double support time, decreased walking speed, control, and coordination. These deficits lead to diminished functional ambulation and reduced quality of life. Robotic exoskeletons (RE) for motor rehabilitation can provide the user with consistent, symmetrical, goal-directed repetition of movement, as well as balance and stability. PURPOSE: The goal of this preliminary prospective before and after study is to evaluate the therapeutic effect of RE training on the loading/unloading and spatial-temporal characteristics in adolescents and young adults with chronic ABI. METHOD: Seven participants diagnosed with ABI between the ages of 14 and 27 years participated in the study. All participants received twelve 45 minute sessions of RE gait training. The bilateral loading (linearity of loading and rate of loading), speed, step length, swing time, stance time, and total time were collected using Zeno™ walkway (ProtoKinetics, Havertown, PA, USA) before and after RE training. RESULTS: Results from the study showed improved step length, speed, and an overall progression towards healthy bilateral loading, with linearity of loading showing a significant therapeutic effect (p < 0.05). CONCLUSION: These preliminary results suggest that high dose, repetitive, consistent gait training using RE has the potential to induce recovery of function in adolescents and young adults diagnosed with ABI.

Visual kinematic feedback enhances the execution of a novel knee flexion gait pattern in children and adolescents.

BACKGROUND: Altered knee motion is one of the most common gait deviations in pediatric populations with gait disorders. The potential for pediatric gait retraining using visual feedback based on knee kinematic patterns is under-explored. RESEARCH QUESTION: This study investigated whether pediatric participants could successfully modify knee flexion patterns in response to a visual kinematic feedback system (VKFS). METHODS: Knee flexion angles from twelve typically developing children and adolescents (6 M, 6 F; 11.9 ±â€¯2.7 years) were calculated using wearable inertial measurement units. Participants were tested while walking on a treadmill using pattern based visual feedback (FB). Four novel target patterns which amplified or attenuated swing phase peak knee flexion were tested. No feedback (NFB) tests assessed the participant's ability to independently reproduce the patterns. Mean absolute cycle error (MACE) and magnitude of peak knee flexion error (PK) were calculated during the last 10 strides of FB and NFB trials. Pre-exposure reference values (R) were also calculated. RESULTS AND SIGNIFICANCE: PK-FB was significantly smaller (p < 0.05) than PK-R for all targets. Average values for PK-NFB were higher than for PK-FB, although PK-NFB remained significantly lower than PK-R for two targets. Contrary to one of the study's hypotheses, MACE-FB and MACE-NFB were larger than MACE-R. The study provided evidence that pediatric participants were able to modify peak knee flexion during gait in the sense targeted by the VKFS. Analysis suggested that MACE increases were explained by increases in gait cycle deviation outside of the changed region.

Kinematic and Functional Gait Changes After the Utilization of a Foot Drop Stimulator in Pediatrics.

Foot drop is one of the most common secondary conditions associated with hemiplegia post stroke and cerebral palsy (CP) in children, and is characterized by the inability to lift the foot (dorsiflexion) about the ankle. This investigation focuses on children and adolescents diagnosed with brain injury and aims to evaluate the orthotic and therapeutic effects due to continuous use of a foot drop stimulator (FDS). Seven children (10 ± 3.89 years) with foot drop and hemiplegia secondary to brain injury (stroke or CP) were evaluated at baseline and after 3 months of FDS usage during community ambulation. Primary outcome measures included using mechanistic (joint kinematics, toe displacement, temporal-spatial asymmetry), and functional gait parameters (speed, step length, time) to evaluate the orthotic and therapeutic effects. There was a significant correlation between spatial asymmetry and speed without FDS at 3 months (r = 0.76, p < 0.05, df = 5) and no correlation between temporal asymmetry and speed for all conditions. The results show orthotic effects including significant increase in toe displacement (p < 0.025 N = 7) during the swing phase of gait while using the FDS. A positive correlation exists between toe displacement and speed (with FDS at 3 months: r = 0.62, p > 0.05, without FDS at 3 months: r = 0.44, p > 0.05). The results indicate an orthotic effect of increased dorsiflexion and toe displacement during swing with the use of the FDS in children with hemiplegia. Further, the study suggests that there could be a potential long-term effect of increased dorsiflexion during swing with continuous use of FDS.

Effects of Robotic Exoskeleton Gait Training on an Adolescent with Brain Injury.

Brain injury is one of the leading causes of motor deficits in children and adults, and it often results in motor control and balance impairments. Motor deficits include decreased walking speed, increased double support time, increased temporal and spatial asymmetry, and decreased control and coordination; leading to compromised functional ambulation and reduced quality of life. Robotic exoskeletons for motor rehabilitation can provide the user with consistent, symmetrical, goal-directed repetition of movement as well as balance and stability. The goal of this case study was to evaluate the efficacy of high dose robotic training on dynamic gait using functional and neuromechanical outcome measures in an adolescent with chronic brain injury. The results from this study demonstrated improved spatial symmetry, swing time, stance time, step length and an overall progression towards healthy bilateral loading. These preliminary results suggest that high dose, repetitive, consistent gait training using robotic exoskeletons has the potential to induce recovery of function in adolescents diagnosed with brain injury.

The use of functional electrical stimulation cycles in children and adolescents with spinal cord dysfunction: a pilot study.

BACKGROUND AND METHODS: Children who experience spinal cord injuries (SCI) may develop many complications, including loss of bone mass, osteoporosis, and pathological fractures. Additionally, patients with SCI often rate their quality of life as poor compared to non-injured peers. We examined the effect of functional electrical stimulation (FES) cycle exercise on bone mineral density (BMD) and quality of life (QOL) in six patients ranging in age from 9 to 20 years. BMD was determined using Dual X-ray Absorptiometry scans, and QOL was measured using the Pediatric Quality of Life Inventory (PedsQL™ 4.0). RESULTS: While patients experienced difficulty in attending sessions consistently, we found a tendency toward improved BMD and QOL associated with the number of months using the FES cycles. In addition, a positive relation was seen between improved BMD and the total number of cycling sessions, as well as between the final rating of QOL and time from injury. CONCLUSION: FES cycle exercise has the potential to increase BMD, possibly leading to a decrease in pathologic fractures, as well as to improve QOL, in children and adolescents with SCI. Further investigation is warranted on a larger population of children with SCI in order to establish the full benefits of FES cycle exercise.

SCUBA diving for individuals with disabilities.

Self-contained underwater breathing apparatus (SCUBA) diving has become an increasingly popular recreational activity, enjoyed by millions of individuals. There has also been a growing interest in SCUBA diving in the disabled population for rehabilitation and recreation. This review discusses medical issues relevant to individuals with disabilities who wish to participate in SCUBA diving. In addition, specialized equipment, adaptations in techniques, and additional precautions will be presented. SCUBA diving can be an enriching experience, potentially helping to improve self-image and quality of life. Knowledgeable healthcare professionals can help to guide their patients who are interested in SCUBA diving.