While implications may be difficult to substantiate given the low feasibility in this sample (and likely population), a few considerations seem warranted. First, children with Down syndrome and other neurodevelopmental disabilities should be included in pain research that could ultimately impact their care. Second, typical approaches to acute and
chronic pain management are encouraged, including the use of distraction as a coping strategy. Lastly, pain assessment for research and clinical care should reflect the complexity of the construct and be based on multiple sources including observational pain scales used in conjunction with self- and/or proxy-report.
REFERENCES 1. Hennequin M, Morin C, Feine JS. Pain expression and
3. Valkenburg AJ, Tibboel D, van Dijk M. Pain sensitivity
5. Biersdorff KK. Incidence of significantly altered pain
stimulus localisation in individuals with Down’s syn-
of children with down dyndrome and their siblings: quan-
experience among individuals with developmental disabili-
drome. Lancet 2000; 356: 1882–7.
titative sensory testing versus parental reports. Dev Med
Child Neurol 2015; 57: 1049–55.
ties. Am J Ment Retard 1994; 98: 619–31. 6. Symons FJ, Harper V, Shinde SK, Clary J, Bodfish JW.
quantitative somatosensory testing of pain threshold in
4. Nader R, Oberlander TF, Chambers CT, Craig KD.
Evaluating a sham-controlled sensory-testing protocol for
individuals with mental retardation. Pain 2004; 108:
Expression of pain in children with autism. Clin J Pain
nonverbal adults with neurodevelopmental disorders: self-
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injury and gender effects. J Pain 2010; 11: 773–81.
Does food and fluid texture consumption relate to dietary intake in preschool children with cerebral palsy? ERIKA GISEL School of Physical & Occupational Therapy, McGill University, Montreal, QC, Canada. doi: 10.1111/dmcn.12775 This commentary is on the original article by Benfer et al. on pages 1056–1063 of this issue.
Benfer et al.1 report on habitual food and fluid textures consumption in a cross-sectional, population-based cohort study of 99 children with cerebral palsy (CP), aged 18 to 36 months. The relationship with the severity of oropharyngeal dysphagia, gross motor function, and children’s proportional intake of food and fluid textures in terms of energy are explored. While there have been many studies over the past 30 years addressing eating and drinking disabilities, and their effect on growth and energy needs in children with CP, many did not yet have standardized tools to measure these parameters. As well, the use of a universally agreed upon terminology for the first 3 years of life in a domain of rapidly changing skills has been and remains a major challenge. Ingestive skills recorded by researchers and parents in this study showed that parents tended to overestimate their child’s skills (40–60% agreement), but parents’ perception of which foods and fluids were safe for their child reached higher agreement (70–80%). This suggests that parents focus on food and fluid texture as an estimator of safety, whereas therapist/researchers focus on oral-motor skills. Thus, therapeutically, it may be easier to show parents
what to look for in terms of safe food and fluid textures, than safe oral-motor skills. Choosing the age range of the sample between 18 and 36 months sets the stage for continued weight monitoring to stem the rapid weight deceleration documented in the infancy period. In the more severely affected children a mean decrease of more than 1SD has been noted in the first 3 months of life which may continue to 2SD by 1 year.2 This then requires that infants at risk should ideally be identified at birth and that appropriate measures must be sought to reliably identify these problems. The model proposed by Lau et al.3 for preterm infants offers criteria for the assessment of oral feeding skills as well as endurance of the infant in transition from tube to oral feeding. The method remains to be studied with infants who have oral-motor disabilities. While gross motor measures (Gross Motor Function Classification System) are currently used to determine the association of ambulatory status and feeding difficulty,4 this reviewer believes that the association of these two constructs should be made in reverse. Feeding is the first competent motor skill of the human infant. Therefore, oral-motor problems may predict future gross motor problems. A possibility would be to study the spontaneous motor patterns of neonates. Einspieler et al.5 have shown that abnormal spontaneous movement patterns are predictors for later development of CP. Feeding patterns could be correlated with the axial and limb patterns to establish a possible association and if such correlations exist whether abnormal feeding patterns may be predictive of gross motor development. Commentaries
Finally, controversy still exists regarding the nutritional requirements of children with CP. However, a recent study showed that ambulant children with CP, as a group, have similar energy requirements as typically developing children,
but that non-ambulant children with CP have markedly lower energy requirements than the two other groups.6 Whether foods and fluids are similarly digested, absorbed, and stored in these groups remains to be determined.
REFERENCES 1. Benfer KA, Weir KA, Bell KL, Ware RS, Davies PSW,
3. Lau C, Smith EO. A novel approach to assess oral feed-
5. Einspieler C, Marschik PB, Prechtl HFR. Human motor
Boyd RN. Food and fluid texture consumption in a popu-
ing skills of preterm infants. Neonatology 2011; 100: 64–
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6. Walker JL, Bell KL, Boyd RN, Davies PS. Energy
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children with cerebral palsy. J Pediatr 2002; 141: 637–43.
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Assessing bone accrual in cerebral palsy: new longitudinal data and future needs TISHYA A L WREN Children’s Orthopaedic Center, Children’s Hospital Los Angeles, Los Angeles, CA, USA. doi: 10.1111/dmcn.12793 This commentary is on the original article by Grossberg et al. on pages 1064–1069 of this issue.
The study by Grossberg et al.1 presents unique longitudinal data on changes in bone mineral density (BMD) in a group of patients severely affected with cerebral palsy (CP) over a 6-year period. There is surprisingly little quantitative data on bone mass in individuals with CP, and almost none of it is longitudinal. This is the longest duration longitudinal study to date, and its findings make clear that individuals with severe CP accrue less bone than individuals without disability, with some actually losing bone when they should be gaining it, particularly in the distal femoral metaphysis. One of the main findings of the study was a positive relationship between weight and BMD. In fact, change in weight was the only significant predictor of change in BMD. On the surface, this may not be surprising since loading is critical to building bone mass and heavier individuals typically generate greater loading; however, it is noteworthy in this study since almost all of the participants were non-ambulatory which greatly reduces weight bearing on the lower extremities. Another main finding of the study was a negative relationship between age and changes in BMD. This is an important relationship that should inform interpretation of the study results. In typical development, bone mass increases rapidly during adolescence and continues to increase at a slower rate through early adulthood. Because bone accrual changes with age and maturation, the mean and median annual percent 990 Developmental Medicine & Child Neurology 2015, 57: 985–992
change in BMD reported by Grossberg et al. should be interpreted with caution. They are gross measures dependent on the study sample and should not be applied as expected changes for individuals. Changes for individuals were highly variable in both the Grossberg et al. study and an earlier 2to 3-year longitudinal study by Henderson et al.2 Normally, the effects of age would be accounted for using z-scores, which compare an individual to age- and sex-matched norms. An unfortunate limitation of the Grossberg et al. study is the inability to report z-scores due to lack of normative data beyond the age of 18 years. Z-scores would help with interpretation of the longitudinal data as the participants mature over 6 years. Without zscores and with the large age range, it is difficult to determine to what extent participants are gaining or falling behind in bone mass accrual. In their introduction, the authors note that over a shorter 2- to 3-year time period, young people with CP, aged 2 to 17 years, gained BMD but decreased in z-scores.2 For lateral distal femur DXA to be useful for osteoporosis screening and treatment monitoring, normative data at older ages are needed. One final point to be aware of is that BMD, the primary outcome measure in this study, is not a true density. BMD is an areal measure (g/cm2) which is affected by bone size, i.e. smaller bones have lower BMD than larger bones of the same density. Thus, children with severe CP have low BMD both because of low bone density and because of their smaller stature and bone size. Bone mineral content might be a more physically intuitive outcome measure to use due to its direct interpretation as total bone mass (g); however, normative data for lateral distal femur bone mineral content are not currently available. Another more accurate, but less widely accessible, alternative is three-