For children and young adults with dysautonomia and related disorders, such as postural orthostatic tachycardia syndrome (POTS), a holistic treatment approach is important to improving functionality and quality of life. We provide multidisciplinary care in the Dysautonomia Clinic at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. Our clinic is one of the only pediatric dysautonomia clinics in the Southeastern United States.

What is dysautonomia and is it the same as autonomic dysfunction and POTS?

The autonomic nervous system regulates many of the processes in our bodies we don’t have to think about, such as blood pressure, breathing, digestion, and other functions. It also helps us feel and process sensations like hunger, happiness, anxiety, and temperature. It plays an important role in connecting many of the organ systems of the body to each other.

Dysautonomia describes an abnormal state where the autonomic nervous system is not functioning in the expected way. It can be best understood as an umbrella term encompassing various disorders of the autonomic nervous system. Postural Orthostatic Tachycardia Syndrome (POTS) is one of those specific diagnoses and is the most well-known. Other common diagnoses include neurocardiogenic syncope (also called vasovagal syncope) and orthostatic intolerance.

Autonomic dysfunction is a pathophysiological state in which the autonomic nervous system is not functioning and communicating between organ systems as expected. Autonomic dysfunction may be present in dysautonomia, but also occurs in other contexts, such as diabetes, neurodegenerative disorders, and chronic inflammatory or autoimmune conditions. For the sake of simplicity, we use the term dysautonomia to describe the broad category of abnormal autonomic nervous system functioning and those disorders.

How is dysautonomia diagnosed?

Because of the role the autonomic nervous system plays in connecting other organ systems, patients with dysautonomia experience a variety of symptoms, which can include cardiovascular complaints (irregular or racing heart beats often with position change), stomach or eating issues, fatigue, joint pain or hypermobility, temperature intolerance, headaches, brain fog, and other symptoms.

Many of these symptoms are nonspecific and can be seen in a variety of disorders other than dysautonomia, making diagnosis challenging. Mood disturbances, like anxiety and depression, and attention issues, such as ADHD, are also common with dysautonomia. Patients often visit many specialists, and some go months or years before receiving an accurate diagnosis and treatment.

In our experience, proper diagnosis of dysautonomia is best done with a thoughtful review of symptoms, examination, and appropriate diagnostic testing performed by a team that understands the nuance and complexity of dysautonomia. At times it may be necessary to exclude or treat disorders, before diagnosis or treatment of dysautonomia can be done.

How is POTS diagnosed?

Postural orthostatic tachycardia syndrome (POTS) is one of the most well-known dysautonomia diagnoses. Diagnostic criteria of POTS in children differs slightly from adults. In youth, a significant increase in heart rate during performance of orthostatic vital signs (changing positions from lying to sitting to standing) without a significant decrease in blood pressure is needed for POTS diagnosis.

However, a diagnosis of POTS requires more than just identification of an increase in heart rate with position change. Since POTS is a type of dysautonomia, other features of dysautonomia such as cardiovascular complaints (irregular or racing heart beats), stomach or eating issues, fatigue, temperature intolerance, headaches, brain fog, mood disturbances and other symptoms, are typically present.

Notably, patients do not have to have a diagnosis of POTS to experience challenging and impairing symptoms of dysautonomia.

What causes dysautonomia?

Through our experience and research, there is rarely a single cause of dysautonomia. This is part of what can make diagnosis and treatment challenging. Anything that causes dysregulation to the autonomic nervous system, such as an infection, autoimmune response, and/or a traumatic life event, can lead to dysautonomia. Additionally, disruption to other organ systems or bodily processes, including emotional disruption, can put stress on the autonomic nervous system and make it more susceptible to dysregulation.

Our Approach to Treatment

Our multidisciplinary team, comprising experts in cardiology, psychology, exercise physiology, nursing, and other medical specialties, provides compassionate, comprehensive care to help patients manage dysautonomia and improve their quality of life.

Research indicates that dysautonomia symptoms often arise from a complex interplay of factors. While each patient’s experience is unique, we’ve found that a multidisciplinary approach built around three core strategies consistently yields the most effective and lasting outcomes.

Consistent hydration and salt

Consistent and adequate fluid and salt intake has been shown to help with many of the most common dysautonomia symptoms, such as dizziness and fainting (syncope). We work with patients to set goals for daily fluid (water and electrolytes) intake, as well as salt (sodium) intake, which can be achieved by adding it to food or using salt supplements, such as tablets or electrolyte additives.

In keeping with our holistic philosophy, we do not prescribe IV fluids as part of routine treatment.

Physical activity

An individually appropriate exercise regimen performed consistently has been proven to be an essential part of restoring autonomic and cardiovascular function. Improved cardiovascular conditioning is one of the strongest predictors of long-term symptom relief in individuals with dysautonomia.

Our exercise physiologist works with our patients to develop an exercise plan that is right for them and aligns with their abilities and goals. This individualized approach helps build endurance safely and sustainably, supporting overall recovery and well-being.

Mental wellness

Many individuals with dysautonomia experience anxiety or other mood disturbances. For some, these challenges predate the onset of dysautonomia symptoms; for others, they emerge as a response to living with a complex and often misunderstood condition.

Unfortunately, patients with dysautonomia or POTS are sometimes mischaracterized as having symptoms driven solely by anxiety or depression. While we know this is not the case, untreated or under-treated mood disorders can significantly hinder autonomic nervous system (ANS) recovery and may intensify dysautonomia symptoms.

We recognize that mental and physical health are deeply interconnected. That’s why we emphasize the importance of learning and practicing coping strategies that can empower patients to better manage their symptoms and improve their overall well-being.

Additional treatments and ongoing evaluation

Once core strategies are in place, supplemental therapies—such as medications—may be introduced to target specific symptoms based on each patient’s individual needs.

We recognize the importance of identifying other medical conditions that may contribute to autonomic dysfunction. Disorders such as anemia, thyroid disease, autoimmune conditions, chronic infections, and sleep disturbances can all disrupt autonomic signaling and mimic or exacerbate symptoms of dysautonomia. If left unaddressed, these conditions may alter how the autonomic nervous system functions over time.

Our team closely monitors for signs of these underlying issues and, when appropriate, provides referrals to specialists within Johns Hopkins All Children’s Hospital to ensure patients receive comprehensive, coordinated care.

Social engagement and activities of daily living

The symptoms of dysautonomia and POTS can make school, exercise, work, and social life challenging. We encourage participation in these crucial activities, recognizing some modifications may be needed. We are able to provide thoughtfully worded letters requesting reasonable accommodations to assist individuals in participation with their desired activities including school, sports, and work. We do not write letters excusing complete absence from these activities, as we want to promote functioning and engagement in life. We are unable to issue disability or handicap placards or letters requesting service animals.