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Autonomic Dysfunction
The autonomic nervous system (ANS) regulates normal function in the body, such as heartbeat, blood flow, breathing, body temperature, bowel and bladder control, sleep/wake cycles and digestion, without our awareness. The ANS is divided into two parts. The sympathetic (“active”) nervous system is involved in the “fight or flight” cardiovascular effects such as faster heart rate, flushing of skin, higher blood pressure, and elevated temperature. The parasympathetic (“quiet”) nervous system manages the opposite effects such as slower heart rate, cooler temperature, lowering of blood pressure. In children with SNI, these systems may not always be functioning normally or in balance with one another, which can result in cardiovascular signs and symptoms of dysautonomia.
Your Team:
A specialist in the study or treatment of heart diseases and heart abnormalities.
An interdisciplinary specialist who helps manage the medical, social and emotional challenges of complex and/or long-term care.
A specialist in evaluation, diagnosis, and management of patients with hereditary conditions.
A therapist who treats through the therapeutic use of everyday activities. They help patients develop, recover, improve, as well as maintain the skills needed for daily living and working.
A specialist whose aim is to improve the quality of life of their patients over the course of their illness regardless of stage, by relieving pain and other symptoms of that illness.
A specialist in the treatment of disease or injury by means of exercise to improve movement and manage pain.
A medical professional who practices general medicine.
Your child’s primary physician will monitor your child’s blood pressure and heart rate and watch for the development of cardiac abnormalities or concerns. A geneticist can aid in determining if an underlying genetic disorder could be affecting your child’s heart. A cardiologist can help diagnose and treat cardiac conditions, working closely with your primary physician and complex care team. Physical and occupational therapists will promote strength and exercise to keep the heart and the rest of the body healthy. Palliative care physicians can assist you in making difficult decisions around treatments or procedures and in communicating with other members of the team.
What Your Child May Experience
Autonomic storm episodes can result in signs such as flushing, warm and red skin, as well as changes in vital signs such as sudden increases in heart rate, blood pressure, and temperature. These episodes can take place with little or no warning. The effects on the cardiovascular system usually last only as long as the autonomic storm and resolves quickly afterwards. If the heart rate and/or blood pressure remain high there can be another cause. Medications to control the heart rate and blood pressure can help limit the cardiovascular involvement of sympathetic nervous system activation.
Sources of chronic pain can also trigger sympathetic activation by causing increases in heart rate and blood pressure. Neuropathic pain can result in sudden increases in these features. The medical team can identify strategies, including medications, that manage both autonomic storms and neuropathic pain.
Parasympathetic system activation (Bradycardia)
Excess parasympathetic activation can result in heart rate slowing, lower blood pressure, and lower body temperature. Circulation may also be affected, with many children having cooler hands and feet. Keeping track of any symptoms such as changes in behavior, changes in responsiveness, or fainting is important as these could be signs that the heart rate and/or blood pressure are too low. Medications can be used to raise the heart rate and blood pressure if your child is having symptoms. At other times, the lower heart rate is adequate to meet the metabolic needs of the body in children with low activity. The medical team can help think through why medications may not be needed in your child.
It can be tempting to focus on numbers, such as heart rate or blood pressure, to understand how the heart is doing. It may help to remember that a single number does not define your child or their overall well-being. These numbers can change from day to day and may not need to be “normal” for your child to feel comfortable. Some children with heart problems may not show signs of heart failure, especially if their daily activities place fewer demands on their heart. Keeping a gentle log of episodes—how often they occur, how long they last, and any possible triggers—can help your care team understand patterns and support you in creating a plan together.
Many parents worry about the possibility of their child passing away when family members are not present, such as during sleep. While this fear is deeply understandable, it is not something you can control. You may want to ask your medical team about monitors or supports that could offer reassurance or alerts if concerning changes occur. If treatment is being considered, it is important to know that some therapies may offer clear benefit, while others may provide limited or no improvement due to the underlying condition. In these moments, your goals for your child and family matter greatly. The palliative care and cardiology teams are there to listen, support you, and help you explore options—knowing that only you can decide what path feels right for your child and your family.
