In this section
Dystonia is a type of movement control problem
that can occur after a brain injury. It refers to repetitive
twisting, abnormal posturing or having the body 'lock in' to various
positions. Dystonia can affect just one body area
including the neck, mouth, jaw, trunk or a limb.
It is caused by abnormal signals from the
basal ganglia part of the brain to the muscles. These wrong
messages result in sustained muscle contractions. Dystonia is made
worse with voluntary movement. When your child is at rest or asleep, the muscles
are relaxed and appear normal.
Dystonia can vary in severity from mild to
severe. It can be focal, involving just one muscle group or body
part, or it can be generalised involving the whole body. It can be
present alongside other motor problems such as spasticity, and its
presence may not always be readily recognised.
This particular motor disorder can have a
delayed onset, for example, weeks or even months after the brain injury occurred.
Dystonia may sometimes become more obvious over time, and this may lead to a loss of motor skills. Severe dystonia can lead to pain,
joint damage and deformity.
Dystonia is not a well-understood problem, and
it can be very difficult and frustrating to treat. This is despite
the skill of the therapist or the frequency of therapy or excercising. Therapy techniques that can work well for other movement
problems such as spasticity and weakness often do not work for
individuals with dystonia.
Dystonia makes it difficult for a person to
control his or her own body movements and posture, and efforts to
do so often make the problem worse. Often, the more a person tries to control their posture the more locked in they may become, or the
more out of control the affected limb gets. Some individuals are able to
develop their own techniques (triggers) for managing their dystonic
posturing. Therefore, it is possible for some individuals to
gain some control.
The presence of dystonia can cause
difficulties with the fitting, making and wearing of splints or
orthoses, and creative solutions are often needed. Protective
splints to minimise pain, joint damage and for functional benefits
can be useful and important in the management of dystonia. Lycra
garment splinting may be worth trialing as it can work well for
some individuals, especially in the upper limbs and trunk.
Focal dystonias can sometimes be relieved by
botulinum toxin injections.
Generalised dystonia may respond to oral
drug treatments such as L-dopa, baclofen, benztropine, benhexol and others. Generalised dystonias are best treated with
oral or intrathecal medications. Intrathecal medications are
delivered directly to the space surrounding the spinal
baclofen is a relatively new, expensive but effective treatment
for severe generalised spasticity and dystonia.
Developed by The Royal Children's Hospital Paediatric
Rehabilitation Service. We acknowledge the input of RCH consumers and carers.
Reviewed August 2020.
Health Info is supported by The Royal Children’s Hospital Foundation. To
donate, visit www.rchfoundation.org.au.
This information is intended to support, not replace, discussion with your doctor or healthcare professionals. The authors of these consumer health information handouts have made a considerable effort to ensure the information is accurate, up to date and easy to understand. The Royal Children's Hospital Melbourne accepts no responsibility for any inaccuracies, information perceived as misleading, or the success of any treatment regimen detailed in these handouts. Information contained in the handouts is updated regularly and therefore you should always check you are referring to the most recent version of the handout. The onus is on you, the user, to ensure that you have downloaded the most up-to-date version of a consumer health information handout.