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briton32

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Everything posted by briton32

  1. Hi I am new here and this is my first post..I have been reading up on some of the other posts here for awhile now..A quick history: my daughter is 14y/o and this summer started passing out for no apparent reason..The first week she had 27 episodes within a 7day period..Needless to say this scared me to death despite the fact that I am a nurse.We had many tests done that first week with no conclusive results..Her mri,Iron level,blood sugar,eeg and all that came back fine..The Friday that ended that first week her doctor(just a family doctor) called me and told me that her echo cardiogram had come back showing Tricuspid Valve Regurgitation and that this was what was causing her to pass out/faint.He started her on Toprol Xl and things started getting better..We only had a few episodes over the next several months and all those were on days where she had forgotten to take her meds.Well the Toprol despite helping with the episodes was making her extremely tired.To the point it was beginning to interfere with her daily activities so we went back to her family doctor.At this time there had been NO talk whatso ever about sending her to a pediatric cardiologist which concerned me..Anyways they changed her over to another med Zybeta I think its spelled like that.Well within 3 days she was back to where we started from as far as the passing out.So I decided on my own to put her back on the Toprol until I could get her into a pediatric cardiologist because I was tired of the lack of action being taken on her behalf.Well I start calling around to get her an appt. and everywhere I called told me it would be a month or more before they could get her in.Ofcourse I was doing this without a refferal.Well someone told me that if I would take her through the emergency room at Lebohner childrens hospital in Memphis which is about 2hrs from where I live that I would get into see a Ped.Cardiologist a whole lot quicker.Two days later my daughter is getting ready for school and I go back to her room and she is out like a light in the floor so I decided after I got her awake I would take her to Memphis and get her in to a cardiologist one way or the other..Well this was the morning of payday and I was broke and had very little gas in my car so I had the plan to go get my paycheck which the office I have to go to is like an hour from me and then take her on to memphis from there.Well on our way out of the town where I got my check she passed out on me again(she had only been back on the toprol for a day and a half)I had trouble arousing her this time so I swung my car around and took her to the ER there..Which worked just as good for me because they got her into a pediatric cardiologist at the Lebohneur childrens hospital for 3 days after she was seen there......Anyways we go to see the Ped doctor and he tells us that the diagnosis of Tricuspid Valve Regurg isnt what the problem was because the echo only showed a trivial amount and that probably 85% of americans would show up with a trival amount of either that or mitral vavle prolapse..That it would have to be atleast a stage 2 or 3 case of regurg to cause her symptoms..He then diagnosed her with NeuroCardiogenic Syncope... Now to get to why this is relevant to this post(Sorry for the long post) I was and still am having some trouble with that diagnosis because everything I have read about it talks about posistion changes causing the passing out/fainting episodes,Standing up from sitting in particular..Well my daughter doesnt have to be changing posistions for her to have an episode..She can be just sitting in a chair talking to me or someone and out she goes..The day I took her to the ER that finally got her into the pediatric cardio she passed out cold in my car with the seat leaned back..I have seen her pass out lying in bed watching tv..She has NO warning signs whatsoever of when an episode is coming on..But my big thing about the whole diagnosis the cardio gave us was the fact that hers werent always related to posistion changes at all...So I guess what I am getting from reading here that it doesnt always HAVE to be that way.And that it IS possible for a person with the NeuroCardiogenic Syncope to passout while sitting/lying still...Also she has said she has felt like she has woken up from passing out in her sleep with a description of feeling much like some of you have described in this thread...I am trying to learn all I can about this disease and find out as much info as I can about the non-"normal" symptoms of this condition..I appreciate any help/advice on dealing with this and maybe some examples of non "textbook" symptoms some of you have experienced..I really appreciate it and thank you lots in advance..I am sorry this post turned into a novel I wasnt meaning for it to..I hope it doesnt upset anyone because it is so long...Again thank you in advance for any help you give...Oh and I dont know if this helps yall in anyway but my daughter had the Tilt Table test done last friday and it came back negative as did her events on the holter monitor she wore for over a month... Thanks, Briton
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