Muscular Dystrophy

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What to expect

Muscular Dystrophy

Muscular dystrophy is a genetic disorder which will weaken the muscles in the body over time. This may impact on a childs ability to use the muscles of speech. A speech and language therapist will help to support the communication of a child with muscular dystrophy. The speech and language therapist can also help with any eating and drinking difficulties a child may have.

What is muscular dystrophy?

Muscular dystrophy is a genetic disorder. Children with muscular dystrophy will have missing or incorrect information in their genes, this will result in the inability to make the proteins which are essential for maintaining healthy muscles. Muscular dystrophy will cause weakness of the muscles and will get worse over time, this may lead to the child being unable to do things like walking and talking.

Symptoms of muscular dystrophy can be present in infancy or develop in childhood or even the teenage years.

There are many different types of muscular dystrophy. Some of the major types of muscular dystrophy which may affect a childs speech, language and eating and drinking abilities include:

Duchenne muscular dystrophy

Duchenne muscular dystrophy (DMD) is the most common type of muscular dystrophy. DMD affect boys and symptoms usually begin between 2 and 6 years old. A child with DMD may have difficulties with the muscles of speech which can affect the childs ability to communicate effectively, it can also affect the childs ability to eat and drink safely.

Becker muscular dystrophy

Becker muscular dystrophy is similar to DMD however symptoms will usually start later in life in the teen years.

Facioscapilohumeral muscular dystrophy

Facioscapilohumeral muscular dystrophy affects boys and girls, symptoms will usually begin during late childhood and in the early teen years. Facioscapilohumeral muscular dystrophy will affect the muscles of the face and shoulders. It may affect a childs speech and also their eating and drinking in more severe cases.

Congenital muscular dystrophy

Congenital muscular dystrophy is a name for types of muscular dystrophy that are present in babies. It involves muscle weakness and may also affect muscle tone. It can have a variety of symptoms including speech and eating and drinking difficulties. In more rare cases it may cause intellectual disability.

What causes muscular dystrophy in children?

Muscular dystrophy is a genetic disorder. It is caused by incorrect or missing information in the genes which prevent the production of proteins which help keep the muscles healthy.

What problems caused by muscular dystrophy can speech and language therapy help with?

Speech and language therapy can help with the following difficulties, which a child with muscular dystrophy may experience:

How is muscular dystrophy diagnosed?

Muscular dystrophy is diagnosed by a team of medical professionals. The speech and language therapist may be involved if the child has any speech language or eating and drinking difficulties. The speech and language therapist will carry out an initial assessment to determine any areas of speech and language affected. An initial assessment may include:

  • A discussion with you about your childs communication and eating and drinking difficulties and any concerns you may have.
  • A history of your childs development.
  • An observation of your childs communication and eating and drinking abilities.
  • A more specific assessment of your childs speech, language and eating and drinking skills. Specific assessment may include examining your childs non-speech movements e.g. tongue and facial movements, asking your child to name pictures, repeat sounds, words and sentences of increasing complexity and length. An eating and drinking assessment would also look at how safely your child is eating and drinking.

How does speech and language therapy help children with muscular dystrophy?

As muscular dystrophy is a progressive condition (symptoms will worsen over time), The main aim of speech and language therapy will focus on maintaining and supporting speech, language and eating and drinking difficulties.

Specific therapies may include oral motor exercises (exercise for the muscles of speech), voice exercises and articulation therapy, these therapies will aim to maintain your childs speech to help them communicate as effectively as possible.

In more severe cases where the symptoms of muscular dystrophy deteriorate and the child becomes unintelligible, the speech and language therapist can work on compensatory strategies or use of alternative and augmentative communication to support your childs communication e.g. using speech amplifiers and alphabet charts. Speech and language therapy can also help your child to maintain the ability to eat and drink as safely as possible.

Speech and language therapy will support you as a parent or carer in helping your child to communicate to the best of their ability. Advice and supervision regarding your childs speech, language and eating and drinking difficulties will also be given.

What would speech and language therapy treatment for a child with muscular dystrophy involve?

An initial assessment carried out by the speech and language therapist will determine the severity and type of speech, language and eating and drinking difficulty your child may have. An initial assessment will additionally help to decide on what the best method of treatment for your child will be. After the initial assessment speech and language therapy may involve:

How do I arrange a speech and language therapy assessment?

To arrange an assessment with one of our speech and language therapists for you and your child please email office@slt.co.uk or call 0330 0885 643.

Summary

Muscular dystrophy is a genetic disorder which weakens the muscles of the body, it can affect any muscle of the body and symptoms will gradually worsen over time. A child with muscular dystrophy may have speech, language and eating and drinking difficulties. A speech and language therapist will help to maintain and support the speech, language and eating and drinking abilities of your child and will aim to maximise your childs communication. If you feel you and your child would benefit from any of the above services then please dont hesitate to contact us. If you would like to arrange a speech and language therapy appointment please email office@slt.co.uk or call 0330 0885 643.


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