Dysphagia

, Volume 20, Issue 2, pp 89–100 | Cite as

Early Oral Sensory Experiences and Feeding Development in Children with CHARGE Syndrome: A Report of Five Cases

  • Cindy Dobbelsteyn
  • Darlene M. Marche
  • Kim Blake
  • Mohsin Rashid
Article

Abstract

Children with CHARGE syndrome commonly experience feeding and swallowing problems. Difficulties may be associated with congenital structural anomalies, motor impairment, and/or oral sensory impairment. For many children with CHARGE syndrome, the introduction of functional oral feeding is delayed and there are often long-term feeding complications. Oral aversion or defensiveness is a frequent serious issue; however, it is uncertain whether this is a primary sensory disorder or secondary to delayed and/or negative oral sensory and feeding experiences. This article examines in detail the early oral sensory and feeding experiences of five children with CHARGE syndrome, through a review of medical records and caregiver questionnaires. Findings indicate variable early oral sensory experiences in this group of children, with all of the children having some difficulty or delay in the development of oral feeding and swallowing. The nature of these difficulties and the potential contributory factors are discussed.

Keywords

Feeding and swallowing CHARGE syndrome Dysphagia Children Oral sensory Deglutition Deglutition disorders 

References

  1. 1.
    Hall, B 1979Choanal atresia and associated multiple anomaliesJ Pediatr95395398PubMedGoogle Scholar
  2. 2.
    Pagan, RA, Graham, JM,Jr, Zonana, J, Yong, SL 1981Coloboma, congenital heart disease, choanal atresia with multiple anomalies: CHARGE associationJ Pediatr99223227PubMedGoogle Scholar
  3. 3.
    Blake, KD, Davenport, SL, Hall, BD, Hefner, MA, Pagon, RA, Williams, MS, Lin, AE, Graham, JM 1998CHARGE association: An update and review for the primary pediatricianClin Pediatr37159174Google Scholar
  4. 4.
    Issekutz KA, Graham JM, Prasad C, Smith IM, Blake KD: An epidemiological analysis of CHARGE syndrome: preliminary results from a Canadian study. Am J Med Genet (accepted August 2004)Google Scholar
  5. 5.
    Lawland C: CHARGE association/syndrome: looking ahead (Web document). Published by the Canadian Pediatric Surveillance Program (CPSP) 2003 Resources, (cited 11 January 2004). < http://www.cps.ca/english/CPSP/Resources/CHARGE.htm>
  6. 6.
    Harvey, AS, Leaper, PM, Bankier, A 1991CHARGE association: clinical manifestations and developmental outcomeAm J Med Genet394855CrossRefPubMedGoogle Scholar
  7. 7.
    Abi Daoud, MS, Gradstein, J, Blake, KD 2002CHARGE into the adolescent and adult decadePediatr Child Health727AGoogle Scholar
  8. 8.
    Raqbi, F, Le Bihan, C, Morisseau–Durand, MP, Dureau, P, Lyonnet, S, Abadie, V 2003Early prognostic factors for intellectual outcome in CHARGE syndromeDev Med Child Neurol45483488CrossRefPubMedGoogle Scholar
  9. 9.
    Bazyk, S 1990Factors associated with the transition to oral feeding in infants fed by nasogastric tubesAm J Occup Ther4410701078PubMedGoogle Scholar
  10. 10.
    Burklow, KA, Phelps, AN, Schultz, JR, MacConnell, K, Rudolph, C 1998Classifying complex pediatric feeding disordersJ Pediatr Gastroenterol Nutr27143147CrossRefPubMedGoogle Scholar
  11. 11.
    Tellier, AL, Cormier–Daire, V, Abadie, V, Amiel, J, Bonnet, D,  et al. 1998 CHARGE syndrome: report of 47 cases and reviewAm J Med Genet76402409CrossRefPubMedGoogle Scholar
  12. 12.
    Roger, G, Morisseau–Durand, M-P, Abbeele, T, Nicollas, R, Triglia, J-M, Narcy, P, Abadie, V, Manac’h, Y, Garabedian, E-N 1999The CHARGE association: the role of tracheotomyOtolaryngol Head Neck Surg1253338Google Scholar
  13. 13.
    Lin, AE, Siebert, JR, Graham, JM,Jr 1990Central nervous system malformations in the CHARGE associationAm J Med Genet37304310CrossRefPubMedGoogle Scholar
  14. 14.
    Blake, KD, Russell–Eggitt, IM, Morgan, DW, Ratcliffe, JM, Wyse, RK 1990Who’s in CHARGE? Multidisciplinary management of patients with CHARGE associationArch Dis Child65217223PubMedGoogle Scholar
  15. 15.
    Lawland, CMD, Blake, KD, Prasad, C, Graham, JM,Jr 2003The cranial nerve anomalies of CHARGE association/syndrome (A/S)Pediatr Child Health826B, 2003Google Scholar
  16. 16.
    Ichord, RN 1994

    Neurology of swallowing disorders.

    Tuchman, DNWalter, RS eds. Disorders of feeding and swallowing in infants and childrenSingularSan Diego 3752
    Google Scholar
  17. 17.
    Arvedson, JC, Brodsky, L 2002Pediatric swallowing and feeding: Assessment and management2Singular PublishingNew YorkGoogle Scholar
  18. 18.
    Wolf, LS, Glass, RP 1992Feeding and swallowing disorders in infancy: Assessment and managementTherapy Skill BuildersSan Antonio, TXGoogle Scholar
  19. 19.
    Staiano, A 2003Food refusal in toddlers with chronic diseasesJ Pediatr Gastroenterol Nutr37225227PubMedGoogle Scholar
  20. 20.
    Morris, SE, Klein, MD 2001Pre-feeding skills: a comprehensive resource for feeding developmentTherapy Skill BuildersSan Antonio, TXGoogle Scholar
  21. 21.
    Strudwick, S 2003Gastro-oesophageal reflux and feeding: the speech and language therapist’s perspectiveInt J Pediatr Otorhinolaryngol67S1S101S102CrossRefGoogle Scholar
  22. 22.
    Field, D, Garland, M, Williams, K 2003Correlates of specific childhood feeding problemsJ Pediatr Child Health39299304CrossRefGoogle Scholar
  23. 23.
    Newman, LA 2000Optimal care patterns in pediatric dysphagiaSemin Speech Lang21281291CrossRefPubMedGoogle Scholar
  24. 24.
    Babbitt, RL, Hoch, TA, Coe, DA 1994

    Behavioral feeding disorders.

    Tuchman, DNWalter, RS eds. Disorders of feeding and swallowing in infants and childrenSingularSan Diego7795
    Google Scholar
  25. 25.
    Mannikam, R, Perman, JA 2000Pediatric feeding disordersJ Clin Gastroenterol303446CrossRefPubMedGoogle Scholar
  26. 26.
    Rudolph, CD, Link, DT 2002Feeding disorders in infants and childrenPediatr Clin North Am4997112CrossRefPubMedGoogle Scholar
  27. 27.
    Illingworth, RS, Lister, MB 1964The critical or sensitive period, with special references to certain feeding problems in infants and childrenJ Pediatr65839848PubMedGoogle Scholar
  28. 28.
    Northstone, K Emmett, P Nethersole, F the ALSPAC Study Team: 2001The effect of age of introduction to lumpy solids on foods eaten and reported feeding difficulties at 6 and 15 monthsJ Hum Nutr Dietet144354CrossRefGoogle Scholar
  29. 29.
    Eicher, PS, McDonald–McGinn, DM, Fox, CA, Driscoll, DA, Emanuel, BS, Zackai, EH 2000Dysphagia in children with 22q11.2 deletion: unusual pattern found on modified barium swallowJ Pediatr137158165CrossRefPubMedGoogle Scholar
  30. 30.
    Rommel, N, DeMeyer, A-M, Feenstra, L, Veerman–Wauters, G 2003The complexity of feeding problems in 700 infants and young children presenting to a tertiary care institutionJ Pediatr Gastroenterol Nutr377584CrossRefPubMedGoogle Scholar
  31. 31.
    Blake, KD, Brown, D 1993CHARGE association looking at the future—the voice of a family support groupChild Care Health Dev19395409PubMedGoogle Scholar
  32. 32.
    Zangen, TZ, Ciarla, C, Zangen, S, Di Lorenzo, C, Flores, AF,  et al. 2003 Gastrointestinal motility and sensory abnormalities may contribute to food refusal in medically fragile toddlersJ Pediatr Gastroenterol Nutr37287293PubMedGoogle Scholar
  33. 33.
    Palmer, MM 1998Weaning from gastrostomy tube feeding: commentary on oral aversionPediatr Nurs25475478Google Scholar
  34. 34.
    Casey, PH 1983Failure to thrive: a reconceptualizationDev Behav Pediatr46366Google Scholar
  35. 35.
    Kerwin, ME 1999Empirically supported treatments in pediatric psychology: severe feeding problemsJ Pediatr Psychol24293314CrossRefGoogle Scholar
  36. 36.
    Byars, KG, Burklow, KA, Ferguson, K, O’Flaherty, T, Santoro, K,  et al. 2003A multicomponent behavioral program for oral aversion in children dependent on gastrostomy feedingsJ Pediatr Gastroenterol Nutr37473480PubMedGoogle Scholar
  37. 37.
    Abadie V: Swallowing and Feeding in CHARGE syndrome, Paper presented at the 4th International CHARGE Syndrome Conference. Houston, TX, 1999Google Scholar
  38. 38.
    Morris SE: Children with feeding tubes. Part 3: Making the transition to oral feeding. (Web document). Published by New Visions, 2000 (accessed 10 June, 2004). < http://www. new-vis.com/fym/papers/p-feed 15.htm>

Copyright information

© Springer Science+Business Media, Inc. 2005

Authors and Affiliations

  • Cindy Dobbelsteyn
    • 1
  • Darlene M. Marche
    • 2
  • Kim Blake
    • 3
  • Mohsin Rashid
    • 3
  1. 1.School of Human Communication DisordersDalhousie UniversityHalifax
  2. 2.Burin Penisula Health Care CentreBurin
  3. 3.Department of PediatricsDalhousie University and IWK Health CentreHalifax

Personalised recommendations