Your child’s primary physician can assess for problems that worsen disorders. A neurologist and physical medicine and rehabilitation specialist can recommend medications and interventions to improve these problems. A neuro-ophthalmologist will assess for and treat visual problems related to the nervous system. Physical and occupational therapists will guide and recommend exercises and stretching. Complex care and palliative care clinicians can help you coordinate between specialists and help guide your care goals.
Neurology
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The brain and nervous system in typical children work together, but in children with neurological disorders they do not communicate properly. Miscommunication between the brain and other body systems might affect ability to walk and to move bowels, and produce or worsen seizure activity, behavior changes, dementia, sleep disruption, cognitive deficits and autonomic dysregulation (dysautonomia), which is disruption of the nerves that control certain automatic body functions (like breathing or digestion). Neurological problems can worsen during an acute illness or because of chronic issues. Because of this, many neurological issues appear to ebb and flow, and can present in varied ways. Neurological issues can be managed or even improved with medical interventions, but they generally cannot be cured.
Adapting to Diagnosis
Collecting information, care and support as issues emerge for your child and your journey begins.
Building Strengths
Maximizing your child’s core skills and family resiliency to develop a foundation for the journey.
Adjusting to Changes
Making decisions and adapting to your child’s evolving baseline throughout the journey.
Navigating Decline
Re-orienting goals and finding support alongside declines in your child’s condition, preparing you for the end of your child’s journey.
Present in Some Children
Clonus
Clonus is an involuntary shaking or rhythmic muscle contraction. Clonus can be observed throughout the body, but is most commonly seen in the biceps, triceps, patella, and ankle regions. Spasticity often occurs with clonus.
Delirium
Delirium is an acute alteration in brain functioning that results in temporary changes in a child’s behaviors. These changes may be due to a problem such as an infection, seizures, or even just medical stress. Delirium may be seen during a hospitalization or after a procedure, or when there are other significant changes in routine or setting. Children who have difficulty with sensory input, such as low vision, are particularly at risk because they cannot get cues about their environment and may become disoriented. The medical team will assess for problems that can cause or worsen or appear to be delirium, and may suggest medications that would help.