The Dysautonomia Clinic at Johns Hopkins All Children’s Hospital is a referral center for pediatric patients (under 18 years old) with complex dysautonomia, which includes postural orthostatic tachycardia syndrome (POTS).

Patients are typically referred from their current subspecialist (e.g., neurologist, cardiologist, rheumatologist or physiatrist) or are seeking a second opinion. Many have already had extensive evaluations by the time they are seen in our clinic. Navigating the medical system can be challenging. The information on this page is provided to help determine if an appointment at the Johns Hopkins All Children’s Dysautonomia Clinic is appropriate for your child.

Given the high demand for this clinic and limited availability, we currently focus on providing specialized support to post-pubescent children over the age of 11 years with dysautonomia symptoms who have been previously cared for by a subspecialist, such as a cardiologist, neurologist, rheumatologist or physiatrist, and are seeking additional support or a second opinion regarding diagnosis or treatment.

If your child has not had a dysautonomia workup by a cardiologist or neurologist within the past year, you will be asked to first establish care with a Johns Hopkins All Children’s or local general cardiologist before being seen in our clinic.

While we continue to manage existing patients through 21 years of age, we do not accept new patients over the age of 18 for an initial evaluation. We encourage patients over 18 to establish care with an adult cardiologist or dysautonomia specialist.

On occasion, after reviewing your child's records, we may determine that an appointment with the Johns Hopkins All Children’s Dysautonomia Clinic is not the best next step and may recommend an alternate option.

It is important that you continue working with your child’s current care team for ongoing needs while awaiting an appointment in our clinic.

Please note: For patients who live outside of Florida, we may be unable to manage or prescribe medications. However, we can provide recommendations for your local provider.

What We Need Before Scheduling Your Evaluation

To ensure a smooth and productive evaluation and determine if our clinic is a good fit for your child, we ask that all required records be submitted prior to scheduling

If your child’s providers or testing were done at Johns Hopkins All Children’s Hospital, we will already have access to those records.

For care received outside of Johns Hopkins All Children’s, it is your responsibility to ensure that the following documents are sent to our office:

Required Records

Clinical Notes:

• Most recent clinic note from the specialist (cardiologist and/or neurologist) managing dysautonomia or POTS
• Most recent clinic note from your child’s primary care physician
• Referral (if applicable)

Diagnostic Reports:

• Most recent ECG (image and report)
• Most recent echocardiogram (images and report, if performed)
• Holter Monitor Results (is performed)
• Exercise Stress Test/Tilt Table Test Report (if performed)

Additional Records (Not Required but Helpful)

Clinical Notes:

• Most recent clinic notes from any of the following specialists your child currently sees:
  • Neurology
  • Gastroenterology (GI)
  • Cardiology
  • Rheumatology
  • Sleep Medicine
  • Physiatry
  • Endocrinology
  • Hematology
• Name and office contact of current mental health professional your child may see (we do not need these notes)

Diagnostic Reports:

• Reports from any of the following procedures or tests:
  • EGD or colonoscopy (performed by GI specialist)
  • Sleep study
  • EEG
  • Nerve conduction studies

Laboratory Results:

• Most recent blood work

Other Important Information/Patient Management

Our clinic is multidisciplinary, meaning your child will be seen by multiple specialists as needed, and the clinic occurs on certain days and times.

Given each person's unique nature, we are unable to give any specific recommendations or treatment advice until we have evaluated the patient.

Our primary diagnostic evaluation for orthostatic intolerance is a 10-minute standing vital signs test. We do not routinely perform tilt table or other autonomic testing.

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 can provide thoughtfully worded letters requesting reasonable accommodations when appropriate.

• 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.

In accordance with our evidence-based practice, we DO NOT provide IV fluids or write prescriptions for them to be obtained elsewhere.

If you ever feel there are urgent or life-threatening concerns, you should reach out to your child’s current care team or seek care at an urgent care center or emergency center.