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Helping Children with Rett Syndrome

written by: Sharon Dominica • edited by: Elizabeth Wistrom • updated: 8/13/2010

Rett syndrome is a genetic condition seen mainly in girls. Here are the various stages of this disease, and interventions that can help children with Rett syndrome at each stage.

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    Rett syndrome is a condition caused by a genetic mutation. It is almost always seen only in girls, and is characterized by a progressive loss of functioning. The progression of the disease can be broadly classifies into 4 stages. Rett syndrome does not yet have a cure, however there are ways we can help and support a child with Rett. Here are the various stages and the difficulties children face at each stage. Following this, are interventions and tips that can be used to help children with Rett syndrome.

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    Stage 1: Developmental Stagnation

    This stage usually starts between 6 and 18 months of age, and lasts for a few months. In this stage, there is a developmental stagnation. The parents may notice that the child is not achieving new milestones. The child may also not be interested in her environment. This is the stage when the parents may feel that the child is “ different". The child may be taken to various doctors for consultation during this stage. Very often, the child may not even be diagnosed at this stage.

    • Occupational Therapy can help the child to engage in play and explore the environment.
    • Physiotherapy can help in the achievement of new milestones. Providing a stimulating environment and professional intervention at this stage may help the child.
    • Parents may benefit from counseling.

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    Stage 2: Regression

    Stage two starts between one and three years of age. At this age the child starts losing skills that she may have gained. Stereotypical movements of the hand may be seen. The child may stop speaking. The child may show many behaviors also seen in autism at this stage.

    • Occupational Therapy can help the child learn some self care skills. It can also help the child be more aware of their environment.
    • A Physiotherapist will help the child maintain the physical skills that she has. It is very important that walking and stair climbing are a regular part of the child’s daily routine.
    • Special educators and Psychologists can help a child learn about their environment. They can also play an important role in behavior modification.
    • They can also, with the Speech Therapist help develop skills that are required for alternate communication.
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    Stage 3: Loss of Physical Abilities

    Stage 3 occurs between 2 and 10 years of age and this is a time when a lot of physical difficulties are seen in the child. The child may have difficulty walking, and have poor balance. The child may also have muscular spasticity or tightness, and other back deformities.

    • Intensive and regular Physiotherapy at this stage will help the prevention of deformities.
    • Good positioning for sleeping and sitting will prevent back deformities from developing.
    • Some assistive aids like weighted vests also help children walk more easily.
    • We can also continue to help the child communicate through assistive technology.
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    Stage 4: Improvement of Social Skills

    Stage four starts around 10 years of age. At this stage the child may lose mobility skills and may need to start using a wheelchair. However, at this stage, social skills especially eye contact may improve.

    • An Occupational Therapist can help modify the home to ensure that the child can access all parts of the house. Modifications in the method of performing self care can help caregivers.
    • Physiotherapy needs to continue to help maintain posture and sitting. Parents and family need to make an effort to include the child in all the activities taking place at home.
    • The child may be able to communicate through assistive communication.
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    These are the difficulties faced by children with Rett syndrome at every stage. Each child with Rett is different, and some children with a mild version of the disease may be a lot more functional. A lot of research is going on concerning treatment for this condition. Until a cure is found, what we can do is to love these children, support them, and help them to be as comfortable as possible.

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    References:

    April Scruggs, Lynchburg College,Rett Syndrome: Characteristics, Causes, and Treatment - Available at:http://www.lynchburg.edu/Documents/GraduateStudies/Journal/ScruggsA.doc

    Neul Jeffoey and Zoghbi Huda, 2004, The Neuroscientist, Volume 10, Number 2,118- 128

A Guide to Rett Syndrome

In this guide to Rett syndrome, Bright Hub has compiled a series of articles detailing the symptoms and causes of Rett's syndrome, along with strategies for adults and children living with it.
  1. 7 Interesting Facts about Rett Syndrome
  2. What is Rett Syndrome?
  3. Helping Children with Rett Syndrome
  4. Occupational Therapy Interventions for Rett Syndrome
  5. What is the Prognosis for People with Rett Syndrome?