One of the most important decisions childhood dysautonomia parents/families/patients face is putting together a team of qualified, competent, compassionate, supportive physicians.
You will need
- You will need a local Pediatrician or General Practitioner (GP) who will provide you with high quality general medical care and who is willing to invest time, patience, support, and understanding in your specific case.
- You will also need a local cardiologist or other qualified physician who knows of or is willing to become familiar with the treatment of dysautonomia conditions and who will handle your case maintenance locally.
- We highly recommend that you also consult with a dysautonomia specialist who is in accordance with currently accepted guidelines and who is well informed of the most recent dysautonomia treatment modalities. In this instance, you are not looking for just any physician but rather a physician who has expertise and experience in the treatment and management of pediatric autonomic disorders. Unless you are one of the blessed few dysautonomia patients who happen to live in the few areas where there are renowned dysautonomia physicians, you will probably have to travel to see a dysautonomia specialist.
Essential issues
Treatment of childhood dysautonomia conditions requires a multi-disciplinary approach which most often encompasses medical and pharmacological treatment. Physical therapy, exercise therapy (for the purpose of strengthening a patient's orthostatic response and muscles), and family caregiving/chronic illness counseling is often very beneficial. It needs to be recognized that there is no magic pill or quick cure for these conditions. The recovery process will involve all of the above modalities along with tremendous perseverance, time and patience.
Receiving quality routine medical care, obtaining an accurate dysautonomia diagnosis, establishing proper maintenance medical care, and implementing a successful treatment plan are all separate issues you will have to address. All of these issues will be essential to your future medical well-being and thus will play a major role in your quality of life.
Note
The medical specialists listed below have been very actively involved with the DYNA organization for our many years of existance and serve on our Medical Advisory Board.
(In alphabetical order)
Hasan Abdallah, M.D.
Children's Heart Institute
171 Elden Street, Suite 200
Herndon, VA 20170
Phone: 1-866-645-4055 or 703-481-5801
Website: http://childrensheartinstitute.org
Aaron Banks, M.D.
Pediatric Heart Center
500 Old River Road
Suite 105
Bakersfield, CA 93311
Toll Free Phone: 877-664-0808
Local Phone: 661-664-0808
Fax: 800-691-2492
Gisela Chelimsky, M.D.
Children's Hospital of Wisconsin
9000 W Wisconsin Ave
Milwaukee, Wisconsin 53226
Phone: 414-266-6864
Thomas Chelimsky, M.D.
Children's Hospital of Wisconsin
9000 W Wisconsin Ave
Milwaukee, Wisconsin 53226
Phone: 414-266-6864
Phillip R. Fischer, M.D.
Mayo Clinic
200 First St. S.W. East 9 Peds
Rochester, MN 55905
Phone: 507-284-2511
John E. Fortunato, M.D.
Ann & Robert H. Lurie Children's Hospital of Chicago
Pediatric Gastroenterology, Hepatology, and Nutrition
225 E. Chicago Avenue, Box 65
Chicago, IL 60611-2605
Phone: 312-227-4607
Fax: 312-227-9392
Blair P. Grubb, M.D.
University of Toledo Medical Center - Autonomic Disorders Clinic
3000 Arlington Avenue
Toledo, OH 43614
Phone: 1-800-321-8383 x 3925
Phone: 419-383-3963
Website: http://utmc.utoledo.edu/clinics/hvc/Syncope_Center.html
Requires physician referral.
There is usually a waiting period so we suggest that you do not procrastinate. There is also the option of seeing Beverly Karabin, MSN, APRN, CFNP and obtaining an earlier appointment.
Georgios Hartas, M.D
Children's Heart Clinic
411 N. Central Avenue
Glendale, CA 91203
Phone: 1-818-839-7101
Website: http://thechildrensheartclinic.com/
Beverly Karabin, MSN, APRN, CFNP, Ph.D
University of Toledo Medical Center - Autonomic Disorders Clinic
3000 Arlington Avenue
Toledo, OH 43614
Phone: 1-800-321-8383 x 3925
Phone: 419-383-3963
Website: http://utmc.utoledo.edu/clinics/hvc/Syncope_Center.html
Frederick Nahm, M.D., Ph.D
Neuro Care Health, P.C.
49 Lake Avenue
Greenwich, CT 06830
Phone: 203-661-9383
William Suarez, M.D.
Northwest Ohio Congenital Heart Center
22 Cherry Street
Toledo, Ohio 43608
Phone: 419-251-8036
Website: http://www.ehealthconnection.com/regions/mercy_st_ritas/dr_William_Suarez.aspx
Requires physician referral.
Inquiries regarding physicians in a specific geographical area are not provided by DYNA, Inc.
Recommended Materials
Other Pages:
Communicating With Your Physician
