Dystonic Cerebral Palsy Therapies


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Therapeutic support overview

Treatment for all forms of cerebral palsy is focussed on enabling the child to live as normal a life as possible. Once a diagnosis has been made (often by the local community disability team) the child is referred to a team of health care professionals who have experience in planning and delivering care to children and young people with cerebral palsy.

This team will usually include a number of healthcare professionals including developmental paediatricians, physiotherapists, occupational therapists, speech and language therapists and nurses.  Regular assessments and reviews are used to monitor progress and identify problems early. These should always involve the patient and the family.  

Physiotherapy

Physiotherapy is a key treatment for all forms of cerebral palsy and will usually be started soon after diagnosis has been made. The focus is on helping the child find the best approach possible to coping physically with their condition. Physiotherapy and physical management programme should be incorporated into the school day to ensure that treatment and education run side by side.
Early physiotherapy treatment will usually give the best results. This will be individualised for your child but may include the following interventions: hands-on therapy to help your child to develop as much control of their movements as possible; use of specialised equipment such as a standing frame or walker to help them do as much as they can for themselves and join in with others; use of orthotics (splints) to help posture or functional abilities such as walking; and advice on exercise and activity for health enjoyment and participation. However it is important to realise that there may be a limit to what physiotherapy can achieve. It is often more about finding the best way to live with the condition rather than about trying to control it.

Occupational therapy

Occupational therapy aims to develop the child’s potential and minimise the effects of the condition. This is achieved through assessment of functional ability, including posture and mobility, followed by the teaching of daily living skills and/or recommendation of adaptive equipment. Occupational therapists (OTs) will give advice and teach your child the best way to carry out daily tasks that require movement skills, such as going to the toilet, getting dressed or accessing technology. It can be extremely useful in boosting your child’s self-esteem and independence especially as they get older.

OTs also assist with ensuring educational potential is achieved through adequate support within the school and college environment. This support should also be incorporated into your child’s care plan.

Speech and language therapy

Speech and language therapy can provide treatment and management options for children with dystonia where there are issues with communication as well as difficulties with eating drinking and swallowing, and saliva control. The focus will be on optimising each child’s communication abilities; speech and language therapists will also work with the multi-professional team and families to ensure their child’s mealtimes are safe and comfortable, and that each child eats and drinks enough to grow and stay healthy.  A child can be helped to improve their saliva control through the use of oral skills programmes, attention to posture and effective oral and dental hygiene. An early assessment by a specialist team including Ear, Nose and Throat (ENT) specialist, paediatrician and a Speech and Language therapist would support the use of these more conservative treatment options before considering the use of medication or surgery to promote better saliva control.

Managing communication

Speech and language therapists would be involved in the assessment and development of a young person’s communication skills. A Total Communication Approach would be encouraged which could include facial expressions, body language, eye pointing, vocalisations, speech and alternative and augmentative methods of communication (AAC).
The Speech and Language Therapist would assess the young person’s understanding and use of language and give their language development.

Young people would be encouraged to use their voice to communicate and specific oral skills programmes could be implemented to help young people who were developing their speech. AAC is the term used to describe methods of communication which can be used to supplement the more usual methods of speech and writing when these are impaired. AAC may include unaided systems such as signing and gesture as well as aided methods ranging from picture and symbol charts and books to computer technology. A voice output communication aid (VOCA) can help to support and extend a young person’s communication. VOCAs can range from a single message device to a computer based aid that has a range of additional functions such as emailing. The Speech and Language Therapist would aim to provide appropriate methods of functional communication within the young person’s home, social and educational environments.

Managing eating, drinking and diet

Children who have problems controlling their mouths may have problems with biting, chewing, drinking and swallowing. This will affect the amount of food and drink consumed which can affect the growth of a child’s body and their general health. These problems can be potentially serious and require treatment. If your child has problems biting, chewing and swallowing (dysphagia), there is a risk  of choking or aspiration which is when particles of food or fluid enter the airway, trachea and lungs. This can damage the lungs and trigger a chest infection (pneumonia). If your child's eating and drinking abilities are slightly affected, it may be possible to teach them strategies to overcome the problems.

For some children, safety and efficiency at mealtimes is ensured by paying close attention to posture, presentation of the food and drink and the environment. A modified diet of pureed, mashed and soft lumpy food or thickened fluids may also be required. A feeding tube may be considered to supplement oral nutrition for some children when it is difficult for them to eat or drink enough to grow and stay healthy: for some children it will replace oral nutrition because of the safety concerns linked with aspiration and respiratory health. A feeding may be temporary such as a naso-gastric tube (which is placed down your child’s nose into the stomach) or a surgically inserted tube connected directly to their stomach e.g. a gastrostomy or jejunostomy tube.

Managing excess saliva

If your child has drooling or dribbling problems, the excess saliva can irritate the skin around the mouth, chin and neck. It can also cause the top layer of skin to break down, which can lead to an infection. A number of treatments can help children control their drooling, including:

  • oral skills programme to promote increased motor activity in and around the mouth as well as increase a child’s awareness of the movements and language associated with saliva control.
  • biofeedback training where the child is taught to recognise when they are drooling and to swallowing accordingly.
  • intraoral or palatal training appliances placed in the mouth to encourage a better tongue position and regular swallowing.
  • anticholinergic drugs, which reduce the body's production of saliva, delivered through oral medication or skin patches where medication is absorbed through the skin.
  • botulinum toxin injections into the Salivary glands, which temporarily reduces saliva production.
  • surgery to redirect the saliva gland so the saliva runs towards the back of the mouth rather than the front

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Last reviewed March 2014

Disclaimer
The Dystonia Society provides the information on this page as general information only. It is not intended to provide instruction and you should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor.
The Dystonia Society is not responsible for the consequences of your decisions resulting from the use of this information, including, but not limited to, your choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from us. If you have any health care questions, please consult the relevant medical practitioner.

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