Rett Syndrome

Information taken from Mayo Clinic, Dr. Theresa Bartolotta, and www.rettsyndrome.org

WHAT IS RETT SYNDROME?

Rett Syndrome is a neurological disorder that mostly affects girls.  It is characterized by normal early development followed by a slowing down of development and eventually regression of skills which can last for several years.  Slowing development typically happens within 6-18 months of age.  Rett syndrome affects brain function that is responsible for cognitive, sensory, emotional, and autonomic function.  Thus resulting in difficulties with the following:  learning, speech, sensory sensations, mood, movement, breathing, cardiac function, chewing, swallowing, and digestion.       

WHAT ARE THE CHARACTERISTICS OF RETT SYNDROME?

  • Loss of purposeful use of the hands
  • Slowed brain and head growth
  • Difficulties walking
  • Seizures
  • Cognitive disabilities
  • Disorganized breathing patterns (when awake)
  • Typically nonverbal

It should be noted that the age of onset as well as the severity of the symptoms vary from child to child.

WHAT CAUSES RETT SYNDROME?

Rett syndrome is caused by mutations to the X chromosome on the MECP2 gene.  However, not everyone who has the MECP2 gene has Rett Syndrome.  This gene is also seen in other disorders.  

HOW IS SPEECH AND LANGUAGE AFFECTED?

Most individuals with Rett syndrome will be nonverbal and they will not develop functional spoken language skills.  Nonstandard behaviors may be used for communication due to limited ability to perform motor functions.  Communication may include eye gaze and head or body movements. 

OUR APPROACH AT KEY THERAPIES:

We will develop an individualized treatment plan for each child based off of his / her current needs.  We will work closely with physicians, nurses, occupational therapists, and other medical professionals.  We will implement AAC strategies and work with your family to help provide the best outcomes.         

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