Finding The Right Doctor For You

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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

  1. 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.
  2. 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.
  3. 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 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. 

Your search

Information regarding the various dysautonomia conditions was not always taught in medical school or nursing school. While medical specialists in the field of dysautonomia are familiar with the varied and complex symptoms associated with these conditions, many others are just starting to gain exposure.

Searching for quality physicians to treat childhood dysautonomia conditions on the Internet is typically not reliable. Many private patient run web-sites/forums do not check into the specific qualifications and/or the patient satisfaction statistics of the physicians they list and instead aim for listing quantity over quality. You will need to do your own investigation. You can take advice and recommendations from others, but remember to be leery of unreliable information. Also remember that adults and children with these disorders have differences.

We recommend that you begin your search for a good doctor by discussing the available medical options with your local Pediatrician or General Practitioner. If they have not already done so, they will probably want to refer you to a Board Certified Pediatric Cardiac-Electrophysiologist in your area. Cardiac Electrophysiologists are cardiology doctors who have specialized training in the heart's electrical system. You will have to do your research and find out what physicians in your area are most familiar with dysautonomia conditions. You may discover it is a cardiologist, neurologist or even a gastroenterologist.

You will want to ask questions such as:

  • "How long have you been treating the various dysautonomia conditions?"
  • "How many patients have you treated with the particular condition I am dealing with?"
  • "How many patients do you continue to treat?" Meaning if the patients are not returning to this facility for follow up care - you will want to know why.
  • "How long have you been following up on your patients?" And, "Do you follow up on your previous patients on a long term basis?" You want to know if they are going to be there for you for follow up care or if they want you to utilize someone locally (and if it is someone locally, ask them if they have a recommendation).
  • "How many patients with this condition do you see a week, month, etc.?" This will give you an idea of how familiar they are with it.
  • At your first appointment you will also want to ask: "For future questions regarding my child's care, is there someone specific in your staff I should contact and what phone number or email do you prefer we utilize?"

 

Your treatment

The local physician that diagnoses you and starts you on a treatment plan does not have to be the only physician that you consult with. Sometimes it is also wise to arrange one consultation with a dysautonomia specialist (especially in complicated cases). The advantage being that they are up to date on the most recent treatment modalities and see a great many dysautonomia patients and thus are very familiar with the complex nature of the illness. Often dysautonomia specialists will work with your local physician regarding your care, and thus you will benefit from a team approach.  Expect a waiting period for appointments with most dysautonomia specialists.  We highly recomend you make the appointment well in advance and keep it (even if you are feeling better at the time).  Dysautonomia specialists understand the ups and downs of these conditions and will not judge you.

When talking to other patients, please remember that no two dysautonomia patients are exactly the same. It is essential that you do not compare yourself to others (and that your doctor does not). You are an individual and your case must be addressed as such.

Do not get insulted if chronic illness counseling is recommended. This is often recommended for dysautonomia patients. Typically, all facilities recommend chronic illness counseling for serious medical conditions. It can be very beneficial. It is not a personal attack on your coping skills.

Physical therapy or exercise conditioning will be necessaary. Gaining motion, movement, muscle tone (and thus blood flow) is extremely important to the recovery process and absolutely necessary for successful recovery.  This is not optional.  Expect it to be greatly encouraged. 

 

Note

Contact the DYNA office directly at 301-705-6995 if you wish to discuss finding the right doctor for your situation in more depth.   We are happy to help you through this process.  We are qualified to provide you with information that will help you better understand dysautonomia conditions and thus enable you to make competent choices in your medical care.

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

Jeffrey Boris, M.D.
Children’s Hospital of Philadelphia - Division of Cardiology
3401 Civic Center Blvd.
Philadelphia, PA 19104
Phone: 215-590-4040 or 800-879-2467
Fax: 267-426-5324
Website: http://www.chop.edu/service/cardiac-center/our-services/postural-orthostatic-tachycardia-syndrome-program.html
Patients 18 and under only

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.

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.

Juan Villifañe, M.D.
Children’s Heart Specialists
731 E Broadway
Louisville, KY 40202
Phone: 502-584-3200
Website: http://mykentuckyheart.com/

Inquiries regarding physicians in a specific geographical area are not provided by DYNA, Inc. 

 

Recommended Materials

Other Pages:
Communicating With Your Physician