15 year old daughter with orthostatic hypotension needs help please!

[Lisa-B]

  My 15 year old daughter was diagnosed by a cardiologist in October with Idiopathic Orthostatic Hypotension. She was prescribed Florinef .1 mg x 1/day + Sudafed 120 mg x 1/day + high salt diet. Over 12 week period, meds were increased to 4 Florinef/day and 2 Sudafed/day - no change in condition. As of last week, her blood pressure still dropped more than 30 points going from a lying/sitting  to standing position (it has been as low as 72/58) and her heart rate at times doubled. She also has dizziness/light headedness, momentary vision loss or spotty vision; numbness/tingling in her limbs and face; flushing in her face and neck. She had mono in Sept. but has otherwise been healthy besides this problem. An ECG showed normal heart function, EKG showed Bradycardia with a rate of 55. The cardiologist referred her to a neurologist. An MRI and EEG were normal. The EMG was "questionably" normal. Leads on her hand produced normal respose, one to her foot had microscopic response. Test was repeated 3 times, lead even switched. Third doctor came in and said it was within the range and not to worry with it. So I received a call from the neurologist's nurse Friday telling me all tests were normal and he was referring her back to the cardiologist. One of my questions is could this minimal response even if perhaps within the range be indicative of something that warrants further investigation - if so, what? We've been seeing a pediatric cardiologist but for all practical purposes, my daughter is a mature young woman. Should we perhaps switch to a reg. cardiologist. This one has never suggested any other medication, but it appears there is another - Midodrine? Any others? Outside of weekly allergy shots and low iron requiring a daily suppliment, my daughter has been healthy and very athletic. 1 1/2 years ago she stretched and tore tendons and ligaments and labrum in her right shoulder. She had to have surgury 7/97 and 5/98 for repair. Could her decrease in physical activity also be a factor or could that have masked an existing problem heretofore? Family history if pertinent: My husband takes medication for high blood pressure as does most of his family; both sets of his grandparents died of heart attacks; his mother has high bp and pernicious anemia; his father had Multiple Sclerosis and died at 46 w/complications; my family is predisposed to low blood pressure (90/60 normal for me); I was diagnosed with Hodgkins Disease when I was pregnant with my daughter. Please tell me what you would do if she were your daughter. We honesty don't know where to turn. All these physicians who've seen her are at Bowman Gray/Baptist Hospital - but who do we go to or go back to next? I thank you from the bottom of my heart for your help.

[CCF CARDIO MD APS]

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Dear Lisa,
I am sorry that your daughter is still suffering from the orthostatic hypotension.
It is likely that she is out of the realm of usual care, and may benefit from an opinion
from a physician experienced in resistant cases.  I am sure there are "other" drugs, but they likely
are drugs not used that frequently or ones that are new on the market, making the experience with them
limited.  
I do know that there are highly regarded physicians in Tennesse who are at Vanderbilt University Medical
Center that have dedicated their entire careers to the treatment of autonomic dysfunction.(Dr. Robertson)
This is where the majority of the research and experience is for autonomic dysfunction (the autonomic nervous
system is believed to be malfuctioning in patients with orthostatic hypotension.
It may be a far place for you to go, but going for a "second opinion" should take only one visit if you have her
records sent ahead of time.  Vanderbilt University Hospital is in Nashville, Tennesse.
I hope this information is useful. Information provided in the heart forum is for
general purposes only. Only your physician can provided specific diagnoses and therapies.
Feel free to write back with further questions. Good luck!
If you would like to make an appointment at the Cleveland Clinic Heart Center, please
call 1-800-CCF-CARE or inquire online by using the Heart Center website at
www.ccf.org/heartcenter. The Heart Center website contains a directory of the
cardiology staff that can be used to select the physician best suited to address your
cardiac problem.