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Management of Rett syndrome: a ten year experience

S S Budden1

  • 1Department of Pediatrics, Oregon Health Sciences University, Portland, USA.

Neuropediatrics
|April 1, 1995
PubMed
Summary

This study evaluated 60 females with Rett syndrome, highlighting effective management strategies for feeding, communication, hand function, and scoliosis. Comprehensive care improved quality of life and functional abilities in patients.

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Area of Science:

  • Neurology
  • Pediatrics
  • Rehabilitation Medicine

Background:

  • Rett syndrome is a rare neurodevelopmental disorder primarily affecting females.
  • Early and comprehensive management is crucial for addressing the complex needs of individuals with Rett syndrome.

Purpose of the Study:

  • To present the experience of a multidisciplinary team in diagnosing and managing 60 females with Rett syndrome over a 10-year period.
  • To discuss key management areas including feeding, communication, hand function, scoliosis, and deformities.

Main Methods:

  • Retrospective review of 60 female patients diagnosed with Rett syndrome (aged 13 months to 43 years) between 1983 and 1993.
  • Focus on clinical and radiological assessments for feeding problems, intervention for hand function, communication strategies, and physical therapy for scoliosis.

Main Results:

  • Clinical and radiological assessment aids in determining the need for gastrostomy versus conservative management for feeding issues.
  • Interventions can facilitate hand use and communication, improving environmental access.
  • Aggressive physical therapy effectively prevented scoliosis progression, often avoiding surgery.
  • Asymmetrical function of neurogenic origin is common in ambulatory patients.

Conclusions:

  • A multidisciplinary approach is vital for comprehensive management of Rett syndrome.
  • Tailored interventions for feeding, communication, hand function, and physical therapy significantly impact patient outcomes.
  • Psychosocial support and collaborative educational planning are essential components of care.

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