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    I am posting to introduce MacKenzie to you all, she is 10 years old, currently in rehab in Baltimore, after an automobile accident left her with chest down paralysis from SCI. She will be living close to me after rehab in June with her family and I offered to help her out. Her mom requested that I get her info out so please forward the link around if you will, and help get the word out. If you would like to help further there is contact info on the website, and I can forward messages too..please post well wishes here and I will link MacKenzie to them. Thank you...


    Thank you so much for posting. There has been a spate of publications on pediatric spinal cord injury in the past 12 months. Some of the more interesting ones are listed below.



    Winthrop AL, Brasel KJ, Stahovic L, Paulson J, Schneeberger B and Kuhn EM (2005). Quality of life and functional outcome after pediatric trauma. J Trauma 58: 468-73; discussion 473-4. BACKGROUND: Injury is the leading cause of preventable morbidity and functional limitation in children. Long-term sequelae are measured best by the degree of impairment after recovery from the acute traumatic event. The specific aim of this study was to determine the quality of life and functional status of moderately to severely injured pediatric trauma patients at hospital discharge and at 1, 6, and 12 months postinjury. METHODS: We conducted a prospective longitudinal study of children aged 1 to 18 years with blunt injury and Injury Severity Score >/= 9, excluding head and spinal cord injury. Children were evaluated at hospital discharge and at 1, 6, and 12 months postinjury, using the Child Health Questionnaire (CHQ), the Functional Independence Measure, and the Impact on Family Scale. Baseline and 1- and 6-month data analyses are reported. RESULTS: One hundred sixty-two children were enrolled in the study, and 156 had completed 6-month data entry. The mean age was 9.3 +/- 5.3 years, and the mean Injury Severity Score was 14 +/- 7.4. The most common cause of injury was motor vehicular-related (43%). Fifty-eight (37%) had multisystem injuries. Femur fracture represented the most common injury (54.8%). Families experienced economic, social, and personal strain, as measured by the Impact on Family scale. There was a significant improvement in CHQ and Functional Independence Measure scores between baseline and 1 month and between 1 month and 6 months postinjury. However, at 6 months, physical scores remained lower than age-matched norms. CONCLUSION: Injury in children results in a significant burden on families. Although children demonstrate a rapid recovery of function and quality of life after blunt injury, physical function remains lower than age-matched norms at 6 months postinjury. It is unclear whether this represents a plateau in recovery or whether further improvements can be expected over longer time intervals. Division of Pediatric Surgery, Department of Surgery, Medical College of Wisconsin, Milwaukee, Wisconsin, USA.

    d'Amato C (2005). Pediatric spinal trauma: injuries in very young children. Clin Orthop Relat Res 34-40. Injuries to the spine in very young children are comparatively rare. The prevalence of upper cervical injuries and spinal cord injuries is greater. Spinal cord injury is more common in young children and fracture is less common than in older children and adolescents. This is because of the anatomic and biomechanical differences in the growing spine including a more horizontal facet orientation, greater elasticity of the soft tissues, less muscular development, and relatively greater head size compared to the trunk. These features are more pronounced in the very young child. The clinical and radiographic evaluation of small children can be difficult. Unossified bone and physeal cartilage can be confused with fractures. The evaluation, safe transportation, and spinal clearance of the unconscious multiply injured child suspected of having spinal injury present special challenges. Shriners Hospital for Children, Portland, OR 97239-3095, USA.

    Pang D (2004). Spinal Cord Injury without Radiographic Abnormality in Children, 2 Decades Later. Neurosurgery 55: 1325-43. OBJECTIVE: Much new research has emerged since1982, when the original description of spinal cord injury without radiographic abnormality (SCIWORA) as a self-contained syndrome was reported. This article reviews new and old data on SCIWORA, from the past 2 decades. METHODS: This article reviews what we have learned since 1982 about the unique biomechanical properties of the juvenile spine, the mechanisms of injuries, the profound influence of age on injury pattern and outcome, the magnetic resonance imaging (MRI) features, and management algorithms of SCIWORA. RESULTS: The increasing use of MRI in SCIWORA has yielded ample evidence of damage in virtually all nonbony supporting tissues of the juvenile vertebral column, including rupture of the anterior and posterior longitudinal ligaments, intervertebral disc disruption, muscular and interspinal ligament tears, tectorial membrane rupture, and shearing of the subepiphyseal growth zone of the vertebral endplates. These findings provide the structural basis for the postulated "occult instability" in the spine of a patient after SCIWORA. MRI also demonstrated five classes of post-SCIWORA cord findings: complete transection, major hemorrhage, minor hemorrhage, edema only, and normal. These "neural" findings are highly predictive of outcome: patients with transection and major hemorrhage had profoundly poor outcome, but 40% with minor hemorrhage improved to mild grades, whereas 75% with "edema only" attained mild grades and 25% became normal. All patients with normal cord signals made complete recovery. The large pool of clinical data from our own and other centers also lends statistical power to uphold most of our original assertions regarding incidence, causes of injury, pathophysiology, age-related changes in the malleability of the spine, vectors of deformation, and the extreme vulnerability of young children to severe cord injury, particularly high cervical cord injury. Thoracic SCIWORA has been identified as an important subset, comprising three subtypes involving high-speed direct impact, distraction from lap belts, and crush injury by slow moving vehicles. Computation of the sensitivities of MRI and somatosensory evoked potentials in detecting SCIWORA shows that both tests were normal in 12 to 15% of children with definite, persistent myelopathy; all of these children were nevertheless braced for 3 months because of their clinical syndrome. Children with transient deficits but abnormal MRI and/or somatosensory evoked potentials were also braced, but the 60% with transient deficits and normal MRI and somatosensory evoked potentials were not braced. This is a change from our original policy in 1982 of bracing all children with persistent or transient deficits, brought on by our new MRI and electrophysiology data. CONCLUSION: Injury prevention, prompt recognition, use of MRI and electrophysiological verification, and timely bracing of SCIWORA patients remain the chief measures to improve outcome. Department of Pediatric Neurosurgery, University of California at Davis, Davis, and Regional Center for Pediatric Neurosurgery, Kaiser Permanente Hospitals, Northern California Region, Oakland, California.

    Carreon LY, Glassman SD and Campbell MJ (2004). Pediatric spine fractures: a review of 137 hospital admissions. J Spinal Disord Tech 17: 477-82. OBJECTIVE: The anatomy and biomechanics of the growing spine produce failure patterns different from those in adults. Spinal injury in the pediatric patient is a concern as prevention of further neurologic damage and deformity and the good potential for recovery make timely identification and appropriate treatment of such injury critical. A retrospective clinical case series was conducted to present data from a large series of pediatric patients with spine injuries from a single regional trauma center. METHODS: One hundred thirty-seven children with spine injuries were seen over 10 years and were divided into three age groups: 0-9, 10-14, and 15-17 years. Analysis of variance and chi2 were used to analyze differences between groups. RESULTS: There were 36 patients aged 0-9, 49 aged 10-14, and 52 aged 15-17. Spine injury incidence increased with age. Motor vehicular accidents were the most common cause in this series. There were 36% cervical, 34% thoracic, 29% lumbar, 34% multilevel contiguous, and 7% multilevel noncontiguous involvement. Nineteen percent had spinal cord injury. Thirteen of 21 complete neurologic injuries and all 3 incomplete injuries improved. Cord injury was more common in the 0-9 age group. Four of five patients with spinal cord injury without radiographic abnormality (SCIWORA) were in the 0-9 age group and had complete neurologic injuries. Young children with cervical injuries were more likely to die than older children. Fifty-three percent had associated injuries. Eighteen percent underwent decompression, fusion, and instrumentation. Two patients developed scoliosis. The complication rate in surgical patients was higher than in patients treated nonsurgically and in polytrauma patients. This may be related to the severity of the initial injury. CONCLUSIONS: Our results suggest age-related patterns of injury that differ from previous work. The incidence of cord injury is 20% with higher frequencies in the young child. Potential for neurologic recovery is good. Young children have a higher risk for death than older children. There was no predominance of cervical injuries in the young child. The incidence of SCIWORA was low. Higher complication rates were seen in polytrauma and surgical patients. Leatherman Spine Center, Louisville, Kentucky 40202, USA.

    Vogel LC, Hickey KJ, Klaas SJ and Anderson CJ (2004). Unique issues in pediatric spinal cord injury. Orthop Nurs 23: 300-8; quiz 309-10. Spinal cord injuries are devastating events, and they are particularly tragic when they affect children or adolescents who have barely had an opportunity to experience life. Of the approximately 10,000 individuals who sustain spinal cord injury each year in the United States, 3% to 5% occur in individuals younger than 15 years of age and approximately 20% occur in those younger than 20 years of age (Nobunaga, Go, & Karunas, 1999). Because of the growth and development inherent in children and adolescents and the unique manifestations and complications associated with spinal cord injuries, management must be developmentally based and directed to the individual's special needs (Vogel, 1997). The many unique facets of pediatric spinal cord injuries are addressed in this article. They clearly delineate the need for care that is responsive to the dynamic changes that occur with growth and development. The multidisciplinary team, combined with a focus on family-centered care, is essential in pediatric spinal cord injuries. Shriners Hospitals for Children, Chicago, USA.

    Hickey KJ and Hickey EM (2004). Educating children, adolescents, and their families following spinal cord injury. SCI Nurs 21: 168-71. Shriners Hospital for Children, Chicago, Illinois, USA.

    Johnson KA, Klaas SJ, Vogel LC and McDonald C (2004). Leisure characteristics of the pediatric spinal cord injury population. J Spinal Cord Med 27 Suppl 1: S107-9. OBJECTIVE: Despite the fact that play is the foundation for growth and development, little empirical evidence exists about the leisure characteristics of the pediatric spinal cord injury (SCI) population. The purpose of this study is to establish such a basis through the examination of leisure interests, frequency of participation, and satisfaction with activity in children and adolescents with SCI. METHODS: A Questionnaire with open- and closed-ended questions for 49 recreation activities was administered to a convenience sample of children and adolescents with SCI from Shriners Hospitals for Children, Chicago. RESULTS: Data from 66 children and adolescents with SCI demonstrated that the higher the intensity level of activity, the lower the participation rate among all injury levels. Subjects with C7-T6 lesions spent the most time engaged in recreational activities and also had the highest number of activities participated in per year. However, those with T7-S4 lesions had significantly more hours spent in high-intensity activities. CONCLUSION: The goal is for rehabilitation professionals to use this information to further develop treatments and interventions specific for the pediatric SCI population. Aurora University, Aurora, Illinois 60506, USA.

    Anderson CJ, Vogel LC, Betz RR and Willis KM (2004). Overview of adult outcomes in pediatric-onset spinal cord injuries: implications for transition to adulthood. J Spinal Cord Med 27 Suppl 1: S98-106. OBJECTIVE: To provide an overview of the adult outcomes of individuals with pediatric-onset spinal cord injuries (SCIs) and the implications of those findings for transition to adulthood. METHOD: Structured interview including standardized measures. PARTICIPANTS: Individuals who sustained SCI at < or = 18 years of age and were > or = 24 years of age at interview; matched community controls. OUTCOME MEASURES: A structured interview including demographics and medical complications. Standardized measures include the Functional Independence Measure, Craig Handicap Assessment and Reporting Technique (CHART), Short Form-12 (SF-12), and Satisfaction with Life Scale (SWLS). RESULTS: Of 265 individuals interviewed (mean age at injury, 13.9 years; mean age at follow-up, 27.8 years), 67% were males, 87% were white, and 59% had tetraplegia. Results showed that 32% had a college degree, 57% were employed, 65% were living independently, and 20% were married; the median income was 12,000 dollars. Compared with controls, subjects were less likely to live independently, be married, have children, or be employed. They showed significantly less community participation, significantly lower life satisfaction, and significantly lower perceived physical health. Multiple regression analyses were conducted for 5 outcomes (independent living, employment, income, CHART total, and SWLS), using demographic factors, impairment, medical complications, use of street drugs, and functional independence as independent variables. Functional independence and education were significantly associated with all five outcomes. Illegal drug use was associated with independent living, employment, and SWLS. Race was associated with employment and CHART. Medical complications were associated with CHART and SWLS. Gender was only associated with living independently, and age at injury was only associated with SWLS. Level of injury was not associated with any of the outcomes. CONCLUSIONS: Adults with pediatric-onset SCI have adult outcomes that are below the level of their peers. These results have implications for improving the transition to adulthood for future patients with pediatric-onset SCI. Shriners Hospitals for Children, Chicago, Illinois, USA.

    Chulamorkodt NN, Estrada CR and Chaviano AH (2004). Continent urinary diversion: 10-year experience of Shriners Hospitals for Children in Chicago. J Spinal Cord Med 27 Suppl 1: S84-7. PURPOSE: To review long-term functional results, complications, and patient satisfaction in patients with a continent catheterizable urinary diversion. MATERIALS AND METHODS: A retrospective chart review and telephone satisfaction interviews were conducted. Bladder dysfunction was attributed to neurogenic bladder (n = 48: 23 spinal cord injury, 18 myelomeningocele, 4 sacral agenesis, 3 cerebral palsy), bladder exstrophy (n = 2), posterior urethral valves (n = 1), and other (n = 3). Patients underwent continent urinary diversion with either the Mitrofanoff principle (appendicovesicostomy, n = 47) or a Monti tube (ileovesicostomy, n = 8). Outcomes were assessed by chart review. Patient satisfaction was assessed by telephone interview and scored from 1 to 10 on a Likert-type scale. RESULTS: Between 1992 and 2003, 54 continent urinary diversions were performed on 17 boys and 37 girls. Mean age was 15.3 years (range, 7-21 years). An umbilical stoma was created in all patients. Seventy-three percent (40/54) and 47% (26/54) underwent concomitant bladder augmentation and urethral sling procedure, respectively. Mean follow-up was 2.5 years (range, 3 months to 10 years). Ninety-five percent (51/54) of patients were continent, and 5% (3/54) were incontinent from the umbilical stoma after one operation. All were compliant with intermittent catheterization. Complications included bladder calculi (15%; 8/54), stomal stenosis (9%; 5/54), stomal bleeding (5%; 3/54), small bowel obstruction (2%; 1/54), and superficial wound dehiscence (2%; 1/54). Seventy-three percent (40/54) of patients were available for telephone interview. Of these, 90% (36/40) reported satisfaction, and 10% (4/40) reported dissatisfaction; 93% (37/40) reported that they would recommend the procedure to others, whereas 7% (3/40) would not. CONCLUSION: In our series, continent urinary diversion with the Mitrofanoff principle or Monti tube is associated with high continence, compliance, and satisfaction rates and a low complication rate. An umbilical stoma was achievable in all patients. Our 10-year experience is consistent with other reported series and underscores the successful long-term outcome and durability of continent urinary diversions. Department of Urology, University of Illinois at Chicago, Chicago, Illinois, USA.

    McGinnis KB, Vogel LC, McDonald CM, Porth S, Hickey KJ, Davis M, Bush P and Jenkins D (2004). Recognition and management of autonomic dysreflexia in pediatric spinal cord injury. J Spinal Cord Med 27 Suppl 1: S61-74. BACKGROUND: Autonomic dysreflexia (AD) is a well-documented complication of spinal cord injury (SCI) at or above the T6 level. However, research into AD has focused primarily on the adult. Because research that involves children with SCI is scarce, current guidelines may not be appropriate for children. Therefore, many episodes of AD may be unrecognized or inappropriately treated. To address this issue, Shriners Hospitals for Children undertook the development of a protocol specific to children and adolescents. METHOD: A task force was developed to look at current literature on AD and blood pressure in children. Utilizing this literature and consensus among the task force members, the tools necessary to treat children with SCI at risk for AD were developed. RESULTS: The task force developed several products intended to assist in the recognition and management of AD. These include an event flow sheet for recording incidents of AD, a letter for the child's school or primary care physician that provides a brief summary of AD and the child's baseline blood pressure, and a policy/protocol with 2 age-specific algorithms to standardize interventions across the 3 Shriners Hospitals in the United States with SCI programs (California, Illinois, and Pennsylvania). CONCLUSION: The Shriners Hospitals for Children Task Force on Autonomic Dysreflexia in Children with Spinal Cord Injury has developed several tools specific to children. However, many questions remain to be answered concerning blood pressure norms and the clinical presentation of AD in children. Shriners Hospitals for Children, Sacramento, California 95817, USA.

    Hickey KJ, Vogel LC, Willis KM and Anderson CJ (2004). Prevalence and etiology of autonomic dysreflexia in children with spinal cord injuries. J Spinal Cord Med 27 Suppl 1: S54-60. OBJECTIVE: To delineate the prevalence, etiologies, clinical manifestations, complications, and management of autonomic dysreflexia in individuals who sustained spinal cord injury (SCI) as children. METHOD: Retrospective chart review. PARTICIPANTS: All individuals with > or = T6 SCI who were injured at 13 years of age or younger and who were cared for at one pediatric SCI program. OUTCOME MEASURES: Outcome measures included prevalence, etiologic factors, and symptoms of autonomic dysreflexia as documented in both inpatient and outpatient records. Blood pressure and heart rate for observed episodes of autonomic dysreflexia also were recorded. RESULTS: Of 121 participants who met the study criteria, 62 (51%) had experienced autonomic dysreflexia. The most common causes of dysreflexia were urologic (75%) and bowel impaction (18%), and the distribution of causative factors were similar in the 3 age ranges (0-5 years, 6-13 years, and 14-21 years). For all age groups, the most common symptoms were facial flushing (43%), headaches (24%), sweating (15%), and piloerection (14%). However, headaches (5%) and piloerection (0%), were uncommonly seen in children 5 years of age and younger. For observed episodes of autonomic dysreflexia, the majority (93%) demonstrated blood pressure elevations consistent with published guidelines, 50% experienced tachycardia, and 12.5% experienced bradycardia. Autonomic dysreflexia was significantly more common in individuals with complete lesions and in those who were injured between 6 and 13 years old compared with those injured at a younger age. Individuals with cervical injuries were not at significantly higher risk of dysreflexia than were those with upper thoracic level injuries. However, among individuals with complete lesions, autonomic dysreflexia was significantly more common in those with tetraplegia. CONCLUSION: Autonomic dysreflexia has a similar prevalence in pediatric-onset SCI compared with the adult SCI population. Dysreflexia is diagnosed less commonly in infants and preschool-aged children, and these 2 populations may present with more subtle signs and symptoms. Shriners Hospitals for Children, Chicago, Illinois 60707, USA.

    Jan FK and Wilson PE (2004). A survey of chronic pain in the pediatric spinal cord injury population. J Spinal Cord Med 27 Suppl 1: S50-3. BACKGROUND/OBJECTIVE: Although several reports characterize pain associated with adult-onset spinal cord injury (SCI), little is known about the incidence and etiology of pain associated with pediatric-onset SCI. The purpose of this study was to assess the incidence and type of chronic pain in the pediatric SCI population and to evaluate the resulting impact on activities of daily living (ADLs). METHODS: Patients attending clinic in a pediatric tertiary care facility in a major metropolitan area having sustained an SCI during childhood were asked to participate. Participants were assessed using the Adolescent Pediatric Pain Tool and the Lansky Play Performance Scale, 2 standardized assessments of pain and function, respectively. In addition, a questionnaire designed to characterize the population and the types of pain reported was administered. RESULTS: Thirty-one participants were enrolled with an age range at the time of injury from 5 months to 18 years. Of this population, 65% reported chronic pain. The pain reports were classified as either nocioceptive (48%) or neuropathic (19%). Interference with ADLs and play was present in only 1 participant. CONCLUSION: Based on these pilot data, pain associated with a pediatric-onset SCI is common. The incidence of pain in this study approached the reported incidence of chronic pain in adult-onset SCI. In the present population, nocioceptive pain was more common than was neuropathic pain. These data suggest that although common, chronic pain associated with childhood SCI has a significantly smaller impact on daily activities than that reported in the literature for adult-onset SCI. The Children's Hospital, Department of Physical Medicine and Rehabilitation, Denver, Colorado 80218, USA.


      hey mary, i was reading their story earlier, man if it wern't for bad luck, this family has been through so much. hope the parents find CC.

      "All you have to decide is what to do with the time that is given you."
      Gandolf the Gray

      2010 SCINet Clinical Trial Support Squad Member

      "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

      .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."


        Thanks so much for sharing MacKenzie's information. She makes me think of what things were first like when Heather was injured. And she is a girl scout too! I would be happy to share information with MacKenzie's mom. I hope things go well for them.

        Wise, I was amazed to see how many articles had Dr. Vogel's name from Shriner's in Chicago. He is the doctor Heather sees there. She also sees Kathy Hickey and Sara Klaas. Awesome people!!!

        Mom to Heather, age 13, T-12, almost 5 years post.
        Mom to Heather, age 16, T-12, 8 years post & Michael, age 19.