The Dysautonomia Clinic at Johns Hopkins All Children’s Hospital is a referral center for pediatric patients (<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 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 needing additional support or are seeking an additional opinion on diagnosis or treatment. If you suspect your child may have dysautonomia or POTS we encourage you to be seen by your primary care physician or local subspecialist for initial evaluation.

To be seen in the Johns Hopkins All Children’s Dysautonomia Clinic, we must have records available for our team to review at least one week before the initial appointment. If we do not have the needed records, we may reschedule the appointment (please note the next available appointment may be months later so we encourage you to verify that the records have been received by our office).

What We Need Before Your First Appointment 

To ensure a smooth and productive visit, we ask that all required records be submitted at least one week prior to your child’s appointment.

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 your child’s primary care physician
• Most recent clinic note from the specialist managing dysautonomia or POTS
• 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:

• Most recent echocardiogram (images and report, if performed)
• 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

• 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.
• It is important you continue working with your child’s current care team for ongoing needs.
• 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.
• On occasion, after reviewing the records, we may determine an appointment with the Johns Hopkins All Children’s Dysautonomia clinic is not the best next step for your child and may suggest an alternate option.