Pediatric Heart Expert Forum
Autonomic Dysfunction/Syncope
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Questions in this forum are answered by pediatric cardiologists, cardiothoracic surgeons and anesthesiologists from The Children's Hospital of Philadelphia. This forum is for questions and support about pediatric heart problems, symptoms and topics such as heart murmurs, palpitations, fainting, chest pain, congenital heart defects (including management and intervention), fetal cardiology, adult congenital cardiology, arrhythmias and pre-participation athletic screening.

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Autonomic Dysfunction/Syncope

Hi.  I am one of the Co-Community Leaders of the Dysautonomia Community here on MedHelp.  Our community frequently gets questions regarding finding certain types of specialists and testing facilities; we tend to have a more difficult time making suggestions for pediatric patients as that isn't where most of us have experience.  I'm hoping you can answer a few questions about your hospital for us.

Do you have a syncope clinic, cardiologists who sub-specialize in syncope, and/or an autonomic clinic which works closely with cardiology on syncope/dysautonomia cases?
Do you offer tilt table tests (with or without plasma norepinephrine levels? both standing and sitting or just the former?), blood volume determination, hemodynamic testing, TST, QSART, QST, etc.?  

One concern that comes up frequently in our community is for parents of children with ANS issues who are geographically close to Vanderbilt, but learn that their autonomic clinic only accepts patients aged 18 and up.  We are always looking for pediatric hospitals in various areas of the country that might have similarly specialized facilities or doctors.  
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Dear Heiferly,

All of our physicians do see all kinds of patients with congenital and acquired pediatric heart disease.  We do not have a syncope clinic at our hospital, but manage patients with syncope through our regular cardiology clinics.  We do not perform complex tilt table testing, as you are describing, nor do we have an autonomic clinic.  However, we do accept patients with dysautonomia for evaluation and treatment.  I also recommend looking at the Dysautonomia Information Network (www.dinet.org) and the Dysautonomia Youth Network of America (www.dynakids.org) websites for information regarding providers and hospitals who care for these patients.
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The Mayo clinic sees children with Dysautonomia. Be patient because it takes 4-6 months to get in. I have a 13 year old daughter with these symptoms. There is a doctor at the Valla New york medical school who treats teens with POTS and hiis name is
Dr. Julian Stewartt. He answered my e-mail in one day(WOW) and referred me to Dr. Phil Fischer at the Mayo clinic.

http://www.nymc.edu/fhp/centers/syncope/J_Stewart.htm
Here is Dr. Stewarts information. Note my daughter has othe complicated medical issues besides just dysautonomia issues so we are going to Mayo for help in all areas.

Good Luck!!
Mom in Texas
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