Dystonia and Children

Dystonia and Children

Childhood Dystonia usually starts in one part of the body and can spread to the rest of the body.  It can cause muscular pain and speech difficulties. It is sorted in these age groups.  

  • Infancy onset: birth to 2 years
  • Childhood onset: younger than 13 years old
  • Adolescent onset: 13-20 years old

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It’s caused in a variety of ways but the most common are:


  • DYT1 gene which causes generalised dystonia, Usually affects the limbs first and progresses. This can cause severe disability. In some cases there may be no known cause and this is referred to as idiopathic dystonia   
  • DYT5 gene causes Dopa-responsive dystonia. Onset is during childhood usually beginning in the legs with sufferers progressively developing difficulty in walking  
  • DYT6 gene can cause adolescent-onset torsion, a mixed type


  • Other Neurological conditions such as Dystonic Cerebral Palsy. Dystonic cerebral palsy often appears with symptoms of cerebral palsy and can cause a fixed, twisted posture
  • Caused by other factors such as head trauma

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There are a variety of treatments available to help relieve symptoms. Here are some of them:

Intrathecal Baclofen

It helps to relax the muscles thru a tiny tube that is surgically placed in the spine. Your child will be assessed by the appropriate health team to ensure this is the right treatment for your child.

Link to more info – Royal Children’s Hospital Intrathecal Baclofen Information

Intrathecal Baclofen image courtesy of RCH http://www.rch.org.au/kidsinfo/fact_sheets/Intrathecal_baclofen_pictures

Image courtesy of RCH. Please seek permission to alter or copy this image. You may share this ADSG page link.

Botulinum toxin

It is injected in certain muscles in the body and it blocks the chemical that causes muscle contractions. Treatment has been shown to be effective in reducing equinus gait pattern in these children (injections to calf, hamstring and hip flexor muscles), improving upper limb function (injections to shoulder, elbow, wrist and finger flexor muscles), reducing pain (injections to hip adductors) and reducing the need for orthopaedic surgery. Children with dystonia may also improve with botulinum toxin type A treatment, although muscle selection and dosing is clinically challenging. Source: Clinical use of botulinum toxin.

Link to more info: VPRS Botulinum injections Information For Families.

Cerebral Palsy Alliance: Botulinum toxin-A for pain, care and comfort and Botulinum toxin-A injections for the arm and hand combined with occupational therapy.


There are a variety of medications used to treat symptoms. Here are some of them.

Levodopa: raises levels of Dopamine a brain neurotransmitter. It helps control muscle movement

Baclofen: muscle relaxant

Clonazepam: muscle relaxant and sedative

Medication information: NPS MedicineWise 

Deep Brain Stimulation – DBS

DBS is surgery where thin electrodes are inserted in an area of the brain and attached to a device implanted under the skin of the chest or in the abdominal wall. Once activated device sends electrical impulses in the brain blocking the signals that cause tremors and other symptoms. Click link for more info.



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Therapeutic/Alternative treatments 

A team of health professionals is very important to help with pain management and the child to have a normal life.

Physio: programs to help control movements

Speech therapy: can assist if have difficulties with communicating or swallowing

Occupational therapy: assess functional ability/mobility and give advice to carry out daily activities. Can discuss pillows etc

Psychologist: help relieve emotional stress

Other: Acupuncture, naturopathy may help

Link to more info – RCH Dystonia Factsheet Page and Caring for a child with dystonia flyer. A Complex Movement Disorders Program will be available at the Royal Children’s  Hospital (RCH) Melbourne soon!

Courtesy of (DMRF). Click to enlarge

Dystonia Research

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