ESP 
Your child’s primary physician and complex care clinician can assess for problems that worsen dystonia. A neurologist and physical medicine and rehabilitation specialist can recommend medications or interventions to mitigate the physical symptoms. A physical therapist and occupational therapist can guide and recommend exercises and stretching to reduce discomfort caused by dystonic movements.
Dystonia
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Dystonia is a movement disorder in which muscles involuntarily contract, resulting in uncontrolled and repetitive movement that include intermittent twisting and abnormal positions. It occurs when signals from the brain to the muscles happen in a dysfunctional way, which can be related to injury to the brain or failure of certain parts of the brain to develop. Dystonia can affect one part of the body (focal dystonia), a group of muscles (segmental dystonia), or muscles throughout the body (general dystonia). It commonly affects the limbs, but it can also involve the muscles of the trunk, cervical region and face. Dystonia may worsen as the child’s underlying condition progresses or simply as the body grows over time. It can be, but is not always, painful.
ESP Dystonia may present quite differently from person to person. The head and neck may be involved, with unusual eye movement or tightly-closed eyelids, repeated muscle contraction of the face, and/or neck twisting. For others, movements are most pronounced in the trunk and extremities, often involving twisting, jerking or extension movements. Share with the medical team if you see these features in your child.
Dystonia treatment generally consists of the following:
- Oral medications
- Injections directly into the muscles to help them relax
- Surgical interventions: intrathecal Baclofen (ITB) pump and/or deep brain stimulation (DBS), which involves electrodes implanted into one or both sides of the brain to modify signals sent to the muscles
Dystonia often worsens with stress, poor sleep or pain. Acute worsening of dystonia, called status dystonicus, can be due to a problem like a bladder infection, and may need management in the hospital. Because dystonia and pain affect each other, the medical team will consider causes of pain that can make dystonia chronically worse.
Sometimes dystonic movements can appear similar to a seizure–involuntary and uninterruptible–and your medical team may suggest evaluating these episodes with an EEG to make sure the treatment plan matches the symptoms.
ESP It can be difficult to observe your child twisting or moving into abnormal positions, particularly if you sense pain. The onset of dystonia can also generate feelings of sadness and loss. Dystonia in children is not well understood, and many parents feel frustration at how challenging it can be to manage it.
It may take time for your care team to recognize and minimize your child’s discomfort and the impact the movements have on your child’s or family’s quality of life. You will come to understand what might trigger a dystonic episode and identify interventions you can employ to lessen symptoms, but often treatment of dystonia requires communication between many specialists. A palliative care clinician can help to coordinate those discussions. They can also help guide your understanding of what a good day looks like and suggest strategies for how to mitigate the negative impact of the movements on quality of life.
