Dear Llonghair and Lisajean:

Thanks for the posts !!! To answer your question about the Celiac Disease, Lexi has been tested four times with a negative result. The doc said that it was highly unlikely because she didn't have any of the other symptoms associated with a gluten allergy or Celiac Disease. But we tried the Gluten Free diet anyway for 6 months. Unfortunately Lexi continued to have fainting spells and seizures. Her Cardio (who I think is the greatest) said that the last time she had a seizure,,,, 3 weeks ago,,, she ws throwing PVCs in her EKG and that he was a little concerned about that. She has been on a holter monitor since. She has to press the button when she gets that "Icky" feeling that she gets when she is going to faint. He said that there was a possiblility that the docs in the E.R. could have missed something when did the Sonogram???? you know where they take a look at the heart working with the gel. Like when your pregnant. Oh, My I am so terrible with medical terms LOL. In any case they are now going to be looking at WPW.(Wolf-Parkinson White)

So we will see what the test shows on the 17th. As far as the Gatorade...Cardio says yes with that much because her blood pressure is sooo low to begin with. And that the added extra electrolytes and sodium help. He also said that any other power sports drink like propel, powerade and things like that would work just as well so we are trying them all. The doc said that NCS on a percentage basis in the case studies,effected the very tall and thin girls which Lexi is.. She is in 5th grade and 5 foot 3 already and slender ( yes she is taller than her mommy lol ).

I know that when we go out to eat she becomes very self conscious of people watching her put extra salt on her food, but she is getting better at that too. I had an experience while we were in DisneyWorld on vacation this summer. We were in the Magic Kingdom eating at a McDonalds little place and a woman at the next table was just staring at her and listening to me telling Lexi to add salt to her French Fries. After we were done, the woman had enough gawl to come up to me and say that I was a bad parent for allowing my child to add tons of salt to an already salty food and that Didn't I know that obescity and Heart Disease is an epademic I ask Lexi to go with her grandmother and wash up, I turned to the woman and said "It's Because of a Heart Condition that she Needs the Salt" I would beg you to keep your comments to yourself because you don't know me , my daughter, or our situation!!

I think that it is situations like that that keep her from feeling in her 10 year old mind,,,"Normal" she has always been very self conscious and I think that is part of her partial non compliance with the drinking and the salt. I hope that someday, she will understand that I am a bear sometimes for her own good!!

Thanks and Many Blessings
Marie
P...S... thanks for the Dysautomomus website. I visited there yesterday and I added it to my favs