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Old 03-28-2008, 05:16 PM
ELIZABETH TANDY ELIZABETH TANDY is offline
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Join Date: Mar 2008
Posts: 1
15 yr Member
ELIZABETH TANDY ELIZABETH TANDY is offline
New Member
 
Join Date: Mar 2008
Posts: 1
15 yr Member
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dear Marie,
My name is Elizabeth and I was diagnosed with the same same condition your daughter has at the age of 17 but I suffered episodes since the age of about 7. I knwo what you are going through with the nervousness about the seizures and the passing out because at 27 my mom still is freaked out by it. I take a medication called Norpace and I have not had an episode since I began the medication. I also know how your daughter feels about having to take a pill for the rest of her life. That's a scary thought for a young girl to think about. I had my time of rebellion with not taking my pills, thinking that the condition might correct itself. Unfortunetly it does not. I am fairly healthy considering and lead a normal life. I live alone and have no worries doing so, though my mom calls way to often to make sure I am okay. I go to the Cardioligist 1 time a year and have not had to go through any major testing (tilt tests, ect) in years. Know that I ahve approximently 15 episodes in my life and have woken up from all of them. So be confident knowing that if controlled correctly the condition is not as bad as it seems. I wish the best for you and your daughter.




Quote:
Originally Posted by Tinkerbell1921 View Post
HI Everyone:

I am the mother of a 10 year old little girl who was diagnosed with Neurocardiogenic Syncopy about 2 years ago. I would just like to get to know other people who have been diagnosed with this problem, or who have family who do. There do not seem to be a lot of support groups for this. She seems to be doing "OK" on the Florinef that she is on when she decides she is going to take it of her own free will. However, she is non compliant with the drinking of the gatorade and the salt issue. It's just that I am so frustrated with her sometimes when she won't comply. She has had some REALLY BAD spells and seizures and I just can't make her see that if she doesn't take her meds and drink, I am afraid that the next time she has a seizure or fainting spell she won't wake up !!!

Thanks for listening:
Marie Russell
Lexi's Mom
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