Growth 8a 21.11.00 BASIC MEDICAL SURVEILLANCE ESSENTIALS FOR PEOPLE WITH DOWN'S SYNDROME GROWTH (One of a set of guidelines drawn up by the Down's Syndrome Medical Interest Group) Short stature is a recognised characteristic of most people with Down's syndrome. Average height at most ages is around the 2nd centile for the general population. For the majority the cause of growth retardation is not known 1. Some conditions leading to poor growth - congenital heart disease 2.3; sleep related upper airway obstruction 4; coeliac disease 5.6; nutritional inadequacy due to feeding problems; and thyroid hormone deficiency 7.8 occur more frequently among those with the syndrome. Regular surveillance of growth, general health, nutritional and thyroid status should aid in early identification of pathological causes of growth retardation. UK/Republic of Ireland growth charts for healthy children with Down's syndrome from birth to 18 years are available 9.10. These reference values are essential for assessing linear growth. However as many older children and adults with the syndrome are overweight 11.12 the reference values for weight should not be used as a standard that children should aim to achieve. BMI data is included on the charts to aid the assessment of overweight. Recommendations: 1. We suggest that it is good practice to record and chart height and weight frequently in the first two years using Down's specific charts 9. Thereafter measurements should be made at least annually throughout childhood and at regular intervals in adult life. Regular measurements of this sort are likely to be sensitive early indicators of the many medical problems which are over represented in the syndrome 2. Preliminary data suggest that many babies with the syndrome do not regain birthweight until around 1 month 13. This is not reflected in the charts because of their cross sectional nature. This early failure to thrive is usually due to feeding difficulties many of which resolve after the first few weeks. From 1 month weight should increase parallel to the centiles. Significant failure to do so should be investigated. 3. Of those with measurements below the 2nd centile some will have major pathology but some may be failing to thrive for other reasons ­ eg because of feeding difficulties.14 Such children should have their dietary intake evaluated and may need to be referred to a paediatrician or paediatric endocrinologist for assessment. 4. The Down's specific charts clearly reflect the tendency to overweight among the UK study sample particularly in later childhood. Hence the reference data should not be used as a standard that children should aim to achieve. Standard BMI charts have been included on the growth charts. We suggest that all those over age 5 with weight above the 75th centile should be charted on the BMI charts. Those above the 98th BMI centile should be considered for further assessment and guidance. Those above the 91st should be carefully monitored. --------------------------------------------------------------------------------------------------------------------------------------------------------------------------- DSMIG (UK) 2000 www.dsmig.org.uk 15.01.02 Growth 8a 21.11.00 5. Although there is a high prevalence of overweight/obesity 11.12 people with Down's syndrome are not necessarily overweight in relation to their height. As with the general population weight is influenced by environmental 12.15 as well as biological factors 16. 6. Appropriate anticipatory guidance regarding diet and physical activity should be given for all those with the syndrome. 7. Thyroid function should always be checked in those with accelerated weight gain. 8. In childhood growth spurts and plateaux occur as in all children but among the Down's population these tend to be more prolonged. They are not reflected in the smoothed curves of a reference chart. 9. The Down's specific chart suggests an absence of pubertal growth spurt. However those with the syndrome do have an adolescent growth spurt. It is usually less vigorous than in the general population and may occur at an earlier age 17. If early onset of puberty occurs it may have a limiting effect on final height. 10. As with all children head circumference should be measured at birth and 6 weeks and charted on Down's syndrome charts. If there is any cause for concern subsequent measurements should be made. 11. The use of growth hormone in Down's syndrome is still being evaluated. There is no evidence that it should be prescribed except in the unusual situation of concurrent primary growth hormone deficiency 18.19.20.21 12. The influence of parental height on target height appears to be variable 22. References: 1. McCoy EE.(1992) Growth Patterns in Down's Syndrome. In Down Syndrome: Advances in Medical Care, Ed. Lott IT, McCoy EE. Wiley-Liss, Inc. NewYork ISBN 0471561843. 2. Cronk CE (1978) Growth of Children with Down's Syndrome: Birth to age 3 years. Pediatrics.61.No4.564-568 3. Greenwood RD, Nadas AS (1976); The clinical course of cardiac disease in Down's syndrome. Pediatrics 58: 893:897. 4. Stebbens VA, Samuels MP, Southall DP, Dennis J, Croft CB; (1991). Sleep related upper airway obstruction in a cohort with Down's syndrome. Arch.Dis.Child. 66.1333-1338 5. George,EK.,Mearin,ML.,Bouquet,J.,von Blomberg,BME., et al (1996) High frequency of coeliac disease in Down syndrome J.Pediatr. 128. 555-557 6. Jansson,J.,Johansson,C. (1995) Down syndrome and celiac disease. J.Ped. Gastroenterology and Nutrition. 21.443-445 7. Karlsson B, Gustafsson J,Hedov G, Ivarsson S-A,Anneren G (1998) Thyroid dysfunction in Down's syndrome:relation to age and thyroid autoimmunity. Arch. Dis Childhood.79.242-245. 8. Sharav T, Collins RM, Baab PJ (1988); Growth studies in infants and children with Down's syndrome and elevated levels of thyrotropin. Amer J Dis Child 142: 1302-1306. --------------------------------------------------------------------------------------------------------------------------------------------------------------------------- DSMIG (UK) 2000 www.dsmig.org.uk 15.01.02 Growth 8a 21.11.00 9. Growth charts for children with Down's syndrome. Harlow Printing. South Shields NE33 4PU. UK 10. Styles ME, Cole TJ, Dennis J, Preece MA (2001) New cross sectional stature, weight and head circumference references for Down's syndrome in the UK and Republic of Ireland. Arch.Dis.Childhood. In Press. 11. Chumlea WC, Cronk CE. (1981) Overweight among children with Trisomy 21. J.Ment.Defic.Res. 25.275-280 12. Prasher,VP.(1995) Overweight and obesity amongst Down's syndrome adults. J.Intellectual.Disability Res. 39.5.437-441 13. Chilvers M (1997) Time for children Down's syndrome to regain birth weight. Nottingham audit findings presented at DSMIG meeting September 1997. 14. Spender Q, Stein A, Dennis J, Reilly SF, Percy E, Cave D. (1996) An exploration of feeding difficulties in children with Down's syndrome. Dev Med Ch Neurol. 38. 681-694 15. Sharav T, BonmanT (1992); Dietary practices, physical activity and Body Mass Index in a selected population of Down's syndrome children and their siblings. Clin Paediat 31 (6): 341-344. 16. Luke A,Roizen NJ,Sutton M,Schoeller DA (1994) Energy expenditure in children with Down syndrome: Correcting metabolic rate for movement. J.Pediatrics. 125 no5 829-838 17. Arnell H, Gustaffson J, Ivarsson SA, Anneren G. (1996) Growth and pubertal development in Down's syndrome. Acta Paediatr. 65:1102-6. 18. Allen DB, Frasier SD, Foley TP Jr, Pescovitz OH (1993); Growth hormone for children with Down's syndrome (editorial). J of Pediatrics, 123:742-3. 19. Anneren G, Gustafsson J, Sara VR, Tuvemo T. (1993); Normalised growth velocity in children with Down's syndrome during growth hormone therapy. J of Intell Disability Res 37(4): 381-7. 20. Torrado C, Bastion W, Wisniewski KE, Castells S (1991). Treatment of children with Down's syndrome and growth retardation with recombinant human growth hormone.J Pediatr 119 (3):478-83 21. Anneren G, Tuvemo T, Carlson-Skwirut C, Lonnerhom T et al. (1999) Growth hormone treatment in young children with Down's syndrome: effects on growth and psychomotor development. Arch Dis Child, 80:334-338. 22. Brook,CGD.,Gasser,T.,Werder,EA.,Prader,A.,Vanderschueren-Lodewykz,MA.,(1977) Height correlations between parents and mature offsprong in normal subjects and in subjects with Turner's and Klinefelter's and other syndromes Annals of Human Biology 4.1.17-22 Enquiries to: Down's Syndrome Medical Information Services Children's Centre, City Hospital Campus, Nottingham NG5 1PB. UK Tel (0)115 962 7658. Ext 45667. (0)115 934 5502 (answerphone). Fax (0)115 962 7915 Email:info@dsmig.org.uk --------------------------------------------------------------------------------------------------------------------------------------------------------------------------- DSMIG (UK) 2000 www.dsmig.org.uk 15.01.02