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 probably also need a local cardiologist or neurologist 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 childhood dysautonomia conditions. Unless you are one of the blessed few dysautonomia patients that happens to live in the few areas where there are renowned dysautonomia physicians, you will probably have to travel to see a dysautonomia specialist.

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. Taking the time to do your research, communication, and investigation will be well worth your effort.

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 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 orders 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 or Pediatric Cardiologist or Neurologist in your area. Most of our families see cardiologists and they most often are cardiac-electrophysiologists. 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 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 a 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. Consulting with a dysautonomia specialist for a second opinion is one thing - but if you change your treatment plan you must communicate with all your physicians. Often dysautonomia specialists will work with your local physician regarding your care and thus you will benefit from a team approach.

Remember that no two dysautonomia patients are exactly the same. It is essential that you do not compare yourself to other patients (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 and exercise conditioning are almost always highly recommended. It is extremely important to the recovery process and a very difficult undertaking by the patient but absolutely necessary for recovery.

NOTE:
DYNA can not specifically refer you to a physician or recommend a particular physician to you. You must take full responsibility for finding a physician that you feel is qualified for your particular situation. DYNA can only provide you with information that will help you better understand dysautonomia conditions and thus enable you to make competent choices in your medical care.

Inclusion on our web site, materials (including this document), medical advisory board, or mailing list should not be construed as an endorsement. The DYNA Board of Directors and any associates of the organization do not endorse any particular physician, facility or treatment protocol.

The medical specialists listed below have been actively involved with the DYNA organization and treat many of our members. They have agreed to be listed here as a helpful resource for treating or finding information on childhood dysautonomia conditions.

(In alphabetical order)

Hasan Abdallah, MD
Children's Heart Clinic
1830 Town Center Drive, Suite 303
Reston, VA 20190
Phone: 1-866-645-4055 or 703-481-5801
http://childrensheartinstitute.org/

Aaron Banks, MD
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, MD
Pediatric Autonomic Center - Gastrointestinal Motility Disorders
University Hospitals of Cleveland
Rainbow Babies and Children's Hospital
11100 Euclid Avenue
Cleveland, OH 44106
Phone: 216-844-1765

Thomas Chelimsky, MD
Director, Autonomic Center
UH Case Medical Center
11100 Euclid Avenue
Cleveland, OH 44106
Phone: 216-844-3495
http://www.uhhospitals.org/tabid/3549/Default.aspx

Phillip R. Fischer, MD
Mayo Clinic
200 First St. S.W. East 9 Peds
Rochester, MN 55905
Phone: 507-284-2511

Blair P. Grubb, MD (DYNA BOARD MEMBER)
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
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, PhD.
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

William Suarez, MD
Northwest Ohio Congenital Heart Center
22 Cherry Street
Toledo, Ohio 43608
Phone: 419-251-8036
Requires physician referral.

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