Newly Diagnosed

A new diagnosis may require assembling a trusted medical team for your child.

If your child has pain, you want to find relief. Chronic pain, migraines or complex regional pain syndrome can require the support of a specialist. If your child is very flexible and Ehlers Danlos Syndrome or a connective tissue disorder is suspected, it is advisable to consult with a geneticist. Psychological support or counseling is another important strategy that helps children cope and live better with chronic illness. Other specialists that may need to be considered for your care team include:

  • Pain Specialist
  • Cardiology
  • Orthopedic
  • Neurologist
  • Neurosurgeon
  • Rheumatologist
  • Allergist/Immunologist
  • Physical Therapist
  • Psychiatrist

Ehlers Danlos Checklist For Pediatricians

Suggested Medical Workup For Those Travelling To See A Specialist

The following document was agreed upon by physicians who attended the 2014 TCAPP Physician Think Tank on Ehlers Danlos Syndrome (EDS) and Co-Morbid Conditions. This worksheet is only a guide for patients (and their local physicians) who are traveling to see an EDS specialist. This guide is not meant to take the place of, or to override the recommendations of one’s primary care physician. The goals of this guide are to help traveling patients keep as much of their medical care and work-up with their local physicians; aide the patients in lessening their financial costs by doing as much of their medical work-up at home as they are able; and when travel is necessary, help the patient collect as much medical information in advance to make the most out of a consult with the EDS specialist.