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Health status of children with moderate to severe cerebral palsy.

date: 06/01/2001
author: Liptak GS, O’Donnell M, Conaway M, Chumlea WC, Wolrey G, Henderson RC, Fung E, Stallings VA, Samson-Fang L, Calvert R, Rosenbaum P, Stevenson RD.
publication: Dev Med Child Neurol. 2001 Jun;43(6):364-70. Comment in: Dev Med Child Neurol. 2001 Jun;43(6):363.
pubmed_ID: 11409824
Outside_URL: http://www.ncbi.nlm.nih.gov/pubmed/11409824
The aim of the study was to evaluate the health of children with cerebral palsy (CP) using a global assessment of quality of life, condition-specific measures, and assessments of health care use. A multicenter population-based cross-sectional survey of 235 children, aged 2 to 18 years, with moderate to severe impairment, was carried out using Gross Motor Function Classification System (GMFCS) levels III (n = 56), IV (n = 55), and V (n = 122). This study group scored significantly below the mean on the Child Health Questionnaire (CHQ) for Pain, General Health, Physical Functioning, and Impact on Parents. These children used more medications than children without CP from a national sample. Fifty-nine children used feeding tubes. Children in GMFCS level V who used a feeding tube had the lowest estimate of mental age, required the most health care resources, used the most medications, had the most respiratory problems, and had the lowest Global Health scores. Children with the most severe motor disability who have feeding tubes are an especially frail group who require numerous health-related resources and treatments. Also, there is a relationship among measures of health status such as the CHQ, functional abilities, use of resources, and mental age, but each appears to measure different aspects of health and well-being and should be used in combination to reflect children’s overall health status.

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The pieces fall into place: the views of three Swedish habilitation teams on conductive education and support of disabled children.

date: 03/01/2003
author: Lind L.
publication: Int J Rehabil Res. 2003 Mar;26(1):11-20.
pubmed_ID: 12601263
Outside_URL: http://www.ncbi.nlm.nih.gov/pubmed/12601263
A survey concerning how Swedish habilitation staff view the support of disabled children and their families was conducted in 2001. It focused on what support the staff knew about, offered and considered good for the children and parents, and on how they viewed conductive education. Interviews were conducted with 25 team members in three habilitation teams in the south of Sweden. The results show that the support habilitation staff most feel children need is the opportunity to investigate their surroundings, play with other children, meet other children in the same situation and try out different activities. The support that parents are felt to need is mainly aid and housing adaptation, relief, financial help, information, medical knowledge, emotional support and to meet others in the same situation. The staff gave information pertaining to different methods of treatment only if the parents specifically asked for it. What the habilitation teams recommended were contracture prophylaxis, motor skills exercises, riding, swimming, splints, standing shells, surgery, injections and medicines. The habilitation staff were of the opinion that conductive education is focused purely on intensive mobility training.

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Pathologic fractures in severely handicapped children and young adults.

date: 08/01/1990
author: Lee JJ, Lyne ED.
publication: J Pediatr Orthop. 1990 Jul-Aug;10(4):497-500.
pubmed_ID: 2358490

The incidence (42%) of vitamin D abnormalities is high in severely handicapped children and young adults who sustain fractures, especially those who sustain multiple fractures. Fractures occur primarily in the lower extremity and heal with simple immobilization. In patients with normal vitamin D levels, a history of a significant traumatic event should be identified and child abuse ruled out. Vitamin D-deficient patients respond to nutritional and vitamin D supplementation, with decreased fracture incidence.

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Bone mineral density and fractures in boys with Duchenne muscular dystrophy.

date: 02/01/2000
author: Larson CM, Henderson RC.
publication: J Pediatr Orthop. 2000 Jan-Feb;20(1):71-4.
pubmed_ID: 10641693

The relationships between bone density, mobility, and fractures were assessed in 41 boys with Duchenne muscular dystrophy. Bone density in the lumbar spine was only slightly decreased while the boys were ambulatory (mean z-score, -0.8), but significantly decreased with loss of ambulation (mean z-score, -1.7). In contrast, bone density in the proximal femur was profoundly diminished even when gait was minimally affected (mean z-score, -1.6), and then progressively decreased to nearly 4 standard deviations below age-matched normals (mean z-score, -3.9). These are consistent with the findings that 18 (44%) of the boys sustained a fracture, 66% of these fractures involved the lower extremities, and there were no spinal compression fractures. Furthermore, four (44%) of nine boys who were walking with aids or support at the time of fracture never resumed walking after the fracture. Osteoporosis is most profound in the lower extremities of boys with Duchenne muscular dystrophy, and begins to develop early while still ambulating. Frequent fractures that may result in loss of ambulation are the clinical consequences.

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Effect of standing on spasticity, contracture, and osteoporosis in paralyzed males.

date: 01/01/1993
author: Kunkel CF, Scremin AM, Eisenberg B, Garcia JF, Roberts S, Martinez S.
publication: Arch Phys Med Rehabil. 1993 Jan;74(1):73-8.
pubmed_ID: 8420525

The effect of “standing” in a frame on spasticity (clinical assessment and H-reflex), contracture (lower extremity joint range of motion), and osteoporosis (dual photon absorptiometry) was studied in six paralyzed males (mean age 49 yr) who had been confined to wheelchairs for an average of 19 years. Standing time averaged 144 hours over a mean of 135 days. Clinical Assessment measured reflexes, tone, and clonus in the legs. Results revealed no important differences between initial and final scores for clinical assessment and joint range of motion. In three subjects for whom H-reflexes were found, latency and amplitude were not altered by “standing.” Bone density was normal in the lumbar spine but significantly reduced in the femoral neck. “Standing” did not modify the bone density in any site. A follow-up interview revealed that 67% of subjects continued to “stand” and felt healthier because of it. In summary, “standing” had no ill effects, did not alter measured variables, and had a positive psychological impact.

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Orthostasis and transcapillary fluid shifts.

date: 01/01/1995
author: Hinghofer-Szalkay HG.
publication: J Gravit Physiol. 1995;2(1):P131-3.
pubmed_ID: 11538896

Postural blood volume changes aggravate the regulation of arterial blood pressure and perfusion vis-a-vis the hydrostatic effects of orthostasis, ie, blood pooling below the hydrostatic indifferent points and reduced cardiac preload. Corresponding problems surface with extended passive standing, particularly in highly trained, dehydrated, or otherwise compromised subjects, or after long-lasting immobilization, as with space flight.

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Quantifying weight-bearing by children with cerebral palsy while in passive standers.

date: 12/01/2007
author: Herman D, May R, Vogel L, Johnson J, Henderson RC.
publication: Pediatr Phys Ther. 2007 Winter;19(4):283-7.
pubmed_ID: 18004195

PURPOSE: Children who are nonambulatory are placed into standers with the goal of providing benefits from weight-bearing. The purpose of this study was to quantify weight-bearing loads by children with cerebral palsy while in standers. METHODS: Electronic load-measuring footplates were fabricated specifically for this study. Weight-bearing loads were continuously measured in 19 children who were nonambulatory during routine 30-minute standing sessions (3-6 sessions/child, total 110 sessions). RESULTS: Weight-bearing ranged widely (23%-102%) with a mean of 68% of body weight. There was some variation over the course of a session and between different sessions, but more variance was noted between subjects. CONCLUSIONS: Actual weight borne in a stander is quite variable, and in some instances only a fraction of actual body weight. Further studies are required to delineate relevant factors and identify ways to maximize weight-bearing loads while in a stander.

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Bisphosphonates to treat osteopenia in children with quadriplegic cerebral palsy: a randomized, placebo-controlled clinical trial.

date: 11/01/2002
author: Henderson RC, Lark RK, Kecskemethy HH, Miller F, Harcke HT, Bachrach SJ.
publication: J Pediatr. 2002 Nov;141(5):644-51.
pubmed_ID: 12410192

OBJECTIVE: To evaluate in a double-blind, placebo-controlled clinical trial the safety and efficacy of intravenous pamidronate to treat osteopenia in nonambulatory children with cerebral palsy. STUDY DESIGN: Six pairs of subjects generally matched within each pair for age, sex, and race completed the protocol. One member of each pair randomly received plain saline placebo, the other pamidronate. Drug/placebo was administered intravenously daily for 3 consecutive days, and this 3-day dosing session was repeated at 3-month intervals for one year. Evaluations were continued for 6 months after the year of treatment. Bone mineral density (BMD) was measured in the distal femur, a site specifically developed for use in this contracted population, and the lumbar spine. RESULTS: In the metaphyseal region of the distal femur, BMD increased 89% +/- 21% (mean +/- SEM) over the 18-month study period in the pamidronate group compared with 9% +/- 6% in the control group. Age-normalized z scores increased from -4.0 +/- 0.6 to -1.8 +/- 1.0 in the pamidronate group and did not significantly change in the control group (-4.2 +/- 0.3 to -4.0 +/- 0.3). The first dosing with pamidronate caused a transient drop in serum calcium that was asymptomatic and not treated. No other potentially adverse effects were noted. CONCLUSIONS: In this small controlled clinical trial, pamidronate was found to be a safe and very effective agent to increase BMD in nonambulatory children with cerebral palsy.

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Bone-mineral density in children and adolescents who have spastic cerebral palsy.

date:
author: Henderson RC, Lin PP, Greene WB.
publication: J Bone Joint Surg Am. 1995 Nov;77(11):1671-81.
pubmed_ID: 7593076

Bone-mineral density was studied in a heterogeneous group of 139 children (mean age, nine years; range, three to fifteen years) who had spastic cerebral palsy. The evaluation included serum analyses and a nutritional assessment based on a dietary history and anthropometric measurements. The bone-mineral density of the proximal parts of the femora and the lumbar spine was measured with dual-energy x-ray absorptiometry and was normalized for age against a series of ninety-five normal children and adolescents who served as controls. Bone-mineral density varied greatly but averaged nearly one standard deviation below the age-matched normal means for both the proximal parts of the femora (-0.92 standard deviation) and the lumbar spine (-0.80 standard deviation). Ambulatory status was the factor that best correlated with bone-mineral density. Nutritional status, assessed on the basis of caloric intake, skinfolds, and body-mass index, was the second most significant variable. The pattern of involvement, durations of immobilization in a cast, and a calcium intake of less than 500 milligrams per day were additional factors of less significance. The age when the child first walked, previous fractures, use of anticonvulsants, and serum vitamin-D levels did not correlate with bone-mineral density after adjustment for covariance with the ambulatory status and the nutritional status. Serum levels of calcium, phosphate, alkaline phosphatase, and osteocalcin were not reliable indicators of low bone-mineral density.

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Bone density and other possible predictors of fracture risk in children and adolescents with spastic quadriplegia.

date:
author: Henderson RC.
publication: Dev Med Child Neurol. 1997 Apr;39(4):224-7.
pubmed_ID: 9183259
:
Forty-three patients with spastic quadriplegia (mean age 7.9 years, range 3.3 to 17.2 years) underwent bone mineral density (BMD) measurement of the lumbar spine and were evaluated between 2.6 and 5.5 years (mean 3.8) later to determine whether this measurement had predicted risk of fracture over the subsequent period of observation. Other potential risk factors that were evaluated include body weight z score, serum vitamin D levels, previous fracture, and hip spica casting. The baseline measurements showed that BMD falls further below normal with increasing age and was more than one standard deviation below age-matched normal mean in 38 of the 43 patients. Fracture rate did not differ between those with low and those with very low spinal BMD. Similarly, serum vitamin D levels and body weight z scores were not predictive of fracture. However, fracture rate was over fourfold greater following spica casting and more than threefold greater following an initial fracture. Fracture rates in the study group were similar to those reported for age- and sex-matched normal children, though generally the location of the fractures and mechanisms of injury differed.