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

Hey Marie,

I just thought I'd pop in here and say "welcome" to BT2. I've had episodes of Vasovagal Syncope on and off since my early teens (onset with menses), but I never knew what it was or that I had a congenital heart problem until I was 18, when I had an episode of PSVT (paroxsysmal Supraventricular Tachycardia), where I got that "icky" feeling and passed out while I was at work in the local hospital ER (good place for it to happen ).

I just thought I'd give you a few links (hopefully new one's for you) to give you a bit more info. Some are technical, but still good resources. Here's one about abnormal heart rhythms (with ECG tracings explained): http://www.anaesthetist.com/icu/organs/heart/ecg/ Here's a link on WPW at the American Heart Assoc.: http://www.americanheart.org/present...dentifier=4785 I have had to wear Holter monitors on and off for the past ten years, but I've been able to manage my heart problem by maintaining good e-lyte balances (though I do get tired of extra salt sometimes). The Echocardiogram (the ultrasound) is repeated every couple of years, but still status quo, so we're going to just leave my ticker alone for now, though in the future I might need to have them go in and do radiofrequency ablasion to the extra conductors in my heart (I have ectopic foci that cause runs of PVCs and elevated heart rate at times).

Its terribly scary at times, and I remember when I was first diagnosed...I was so mad at having to do all of these extra things and walk around strapped up like some frankenstein with leads through my clothing. I can imagine your daughter is feeling much the same. I just wanted to be able to be a "normal" 18 y/o (college, sports, parties, etc.) and I was able to, once all the testing was done. If your daughter needs someone to vent to, see if a school counselor is available. My college had a great psychologist on staff that helped me cope with my heart stuff and again with my spine (I'm now permanently disabled with back problems at 27).

If you have any specific questions I can help answer, please feel free to PM me if you like. Keep stong, and I am sure your daughter will be able to adjust to all of this.

Theresa

Marie,

Please let us know how your daughter's appointment goes later this week.

I wore a monitor for around 45 days, and pressed the button as your daughter has to. Does hers have the "loop back" feature? What that does is, even if she presses the button "x" minute, the loop back has already been recording; mine looped-back 5 mins. After recording, a tele. number is phoned and the recording is transmitted via phone to the "monitoring" center, which has technicians and others interpreting and faxing the readout to the cardiologist.

Unlike a sonogram or ultrasound, the monitoring isn't just for the moments while technicians are checking things. I think it gives doctors a more in-depth "read" on what's happening.

Mine picked up PVCs and SVTs (along with already dx'd symptomatic MVP).

Until this past year or so, my BP was low. As with your daughter, my cardiologist told me to increase salt intake. One of his ideas is one that, I know, won't work for your daughter: he had to pull a holiday weekend shift and told me to go out and have a margarita with salt for him . His other idea was eat red meat - along with plenty of fluids, which you already know too well.

When those things weren't working, he put me on the beta blocker Toprol XL, starting at 12.5 MGs a day. Now, I'm on 50 MGs a day and it seems to have really stabilized things. During my cardio. appointments, the doc still detects when things are working/sounding right, yet it's a lot better now than everything felt a couple years ago.

I don't know whether her cardio. doc might have mentioned this, so I'll go ahead and share what mine told me... Whenever I am awake and feeling light-headed or dizzy, sit down immediately if I'm standing - and no matter whether it means I'll have to sit on the floor or ground even in public. (When pain is causing the syncope, the pain is what stops me from standing.)

I can definitely relate to what you and your daughter are going through, Marie.

Hi Tinkerbell. I have NCS too. Unfortunately, the high salt diet and meds didn't work for me. I now have a pacemaker. Please don't let that scare you! It's not nearly as bad as it sounds. In all honesty, I prefer it to the meds (those meds were rough, yuck!) I was terrified when I first found out I had to get the pacemaker, but now that I have it, it's great. I am not completely pacer dependant (my heart can "outrun" my pacemaker, it just doesn't let it slow down below 60)
I too failed a couple of tilt tests. First one, I was up for something like 7 minutes.....then my heart stopped, I stopped breathing, and my blood pressure was non-existent. The 2nd one I was on meds and stayed up a bit longer, but when I went down, the same thing happened. That's when my doc said it was time for a pacemaker.

I don't know what to tell you really. Just wanted to reply to say I know what it's like to go through it. You mentioned that they wanted to repeat the sonogram thing (an echo?) I wonder if they are thinking that they might have missed mitral valve prolapse? I wonder that because my first cardiologist had the same worries. However, my 2nd one (1st one moved) said that my NCS just mimmicks MVP. Maybe that is what it is in your daughter's case too. Or is it even MVP that they are looking for?

Have they repeated the tilt table since your daughter started taking meds? I'm not a doc, but I STRONGLY urge you to think that one over a LOT if it is suggested. Your daughter is obviously still experiencing some major symptoms....to repeat the tilt would more than likely result the same as the first time....it did for me. If I had it to do over again, I would have refused the 2nd tilt...live and learn I too was told I had the "worst reaction" in the 20yrs the hospital had been using the tilt test where I had it done. Wow...NOT something you want to be famous in a hospital for! LOL Bless your and your daughter's hearts!

I did have a couple of problems when I first had my pacemaker implanted. If it is ever recommended for your daughter to receive one, feel free to PM me! Feel free to PM me if you want to anyway
Let us know how the appt goes.-Hyper