Rett Syndrome

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What to expect

Rett Syndrome

Rett syndrome is a neurological condition which affects the grey matter in the brain. Rett syndrome is more common in girls than boys.

What is childhood Rett syndrome disorder?

Rett syndrome is a neurological condition. A characteristic of this condition are small hands and feet. A child with Rett syndrome will usually have a normal period of development till about six to eighteen months, where a loss of motor, speech and language skills will then occur.

It is estimated that 50% of children with Rett syndrome are unable to walk and many children with Rett syndrome are non-verbal (unable to talk).

A child with Rett syndrome will present similarly to a child with autism i.e. may show the following signs:

  • Loss of language skills
  • Avoidance of eye contact
  • Lack of social skills
  • Balance and communication problems

As many children with Rett syndrome are non-verbal, this will have a huge impact on their speech and language skills and their ability to communicate with others. The speech and language therapist will work on supporting a childs communication and will often explore alternative ways of communicating.

What causes childhood Rett syndrome?

Rett syndrome is a genetic condition caused by mutations in the gene MECP2.

What problems caused by Rett syndrome disorder can speech and language therapy help with?

Speech and language therapy can help with some of the following difficulties experienced by children with Rett syndrome:

How is Rett syndrome diagnosed?

Rett syndrome is diagnosed in childhood by a team of medical professionals. The speech and language therapist will contribute to assessing what speech and language difficulties a child with Rett syndrome might have.

The speech and language therapist will carry out an initial assessment which will involve the following:

  • A discussion with you about your childs speech and language abilities and what your main areas of concern are.
  • Taking a case history of your childs development, medical and family history.
  • A general observation of your childs speech, language and play skills.
  • A more thorough assessment of your childs language, play and interaction skills.

How does speech and language therapy help children with Rett syndrome?

For a child with Rett syndrome, speech and language therapy will aim to improve their communication to their maximum potential.

Rett syndrome will impact on many aspects of a childs communication including interaction, receptive (understanding) and expressive (verbal) language, with many children often being non-verbal (unable to speak). These communication difficulties will make it hard for a child with Rett syndrome to interact with others, and communicate effectively with others in many different environments including the school and home.

Speech and language therapy will help to support a child with Rett syndrome and their communication difficulties by deciding what the best method of communication will be for their specific communication needs. The speech and language therapist may implement alternative and augmentative communication for a child with Rett syndrome including picture exchange communication system or sign language.

Speech and language therapy will also support you, as a parent or carer to communicate as effectively as possible with your child.

What would speech and language therapy treatment for Rett syndrome involve?

The speech and language therapist will carry out an initial assessment of your childs speech and language abilities. This will decide what the main focus of treatment will be for your childs specific needs. Speech and language therapy may involve the following:

During the treatment phase you will also be given the opportunity to share any concerns you may have and also any things you would like us to work on in therapy with your child.

How do I arrange a speech and language therapy assessment for Rett syndrome?

Please call 0330 0885 643 or email office@slt.co.uk to arrange a speech and language therapy assessment for your child.

Summary

Rett syndrome is a neurological condition which results in a child losing their language, motor, social and play skills at around the age of six to eighteen months, following a period of typical development.

Many children with Rett syndrome will often be non-verbal (unable to speak) and may have limited understanding, which will impact greatly on their ability to communicate with others. Speech and language therapy will aim to increase your childs communicative effectiveness. If you feel you and your child will benefit from speech and language therapy please do not hesitate to contact us.


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Next steps

To speak to a Speech and Language Therapist or to book an appointment, call us on 0161 883 0111 or email office@slt.co.uk

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