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  1. #1
    Join Date
    Apr 2004
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    Reno, NV
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    Default Pixie Dust, please

    My DD 16(Kat) is going to the cardiologist today. She has had problems since she was about 9, and they have gotten worse. It's causing her a good bit of pain now. Her heart will beat normally a few times, then have a long pause, and then gallops to catch back up, and starts over. I've listened to that rhythm many times, and that long pause always scares me! (ok, now I'm crying...) We had a pediatric cardiologist back "home" in SC, but since we are here in Reno now, we are going today to a new Dr.

    Kat is very active and absolutely LOVES Aikido, a martial arts. She does have days when she just can't do it, or has to sit out for a while. But she hardly ever complains. I just wish I could magically fix her!

    Thanks for letting me dump some stress, and thanks in advance for pixie dust!

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  3. #2
    Join Date
    Jul 2005
    Location
    Ontario, Canada
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    and prayers coming your way!
    Heather aka ibelieveindisneymagic
    INTERCOT Staff


    Engaged at the castle!
    My Disney Home is POFQ

  4. #3
    Join Date
    Oct 2005
    Location
    Howell, NJ
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    pixie dust on the way!! hope its nothing to serious!! let us know how it goes..
    *bRiTTaNy*
    35 trips to WDW already...
    May 2012 - Daughters first trip - one bedroom Villa at Wilderness Lodge
    Sept 2012 - Pirate room at CBR
    Dec 2014 - SSR -second daughters first trip and my older daughters 5th Birthday!!

  5. #4
    Join Date
    Jul 2001
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    Florida
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    Hope all goes well!
    Linda aka: Faline
    INTERCOT Staff: Vacation Planning,Trip Reports and Disney Camping
    [email protected]

  6. #5
    Join Date
    May 2005
    Location
    Colorado
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    Everyone needs to dump now and then! I hope that the cardiologist has good news that will lower your level of stress. Let us know!

    Amy
    "I shall call him Squishy and he shall be mine. And he shall be my Squishy."

    "Just keep swimming...just keep swimming...just keep swimming, swimming, swimming...What do we do, we...swim...swim"

    Previous trips: Dolphin/ASMo, CBR, AKL, Pop, WL
    Upcoming trip: Spring Break at Pop

  7. #6
    Join Date
    Jun 2005
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    SW Florida
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    TRACEY
    șOș

    Disneyland as a kid
    11/02-POFQ * 07/04-Disneyland PPH * 11/05-AKL * 10/08-CBR * 12/10-WL * 11/11-AKL * 11/12-AKL * 11/13-GF * 11/14-AKL * 06/15-Poly * 12/15-YC * 5/16-BWI * 12/16-BC * 5/17-Poly * 10/17-GF * 12/18-POFQ * 12/19-YC * 12/20-CSR * 12/21-BC * 3/22-CSR

    Next: 9/22*BWI





















  8. #7
    Join Date
    Jul 2005
    Location
    Connecticut
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    I hope it goes well and you hear some comforting news.
    Sherri
    Next: Aulani Celebration 10/2018 (50th)
    Past Stays: Contemporary, GF, Poly, BC, POP, POR, Dolphin, AKL Kidani, BLT
    1990 August Honeymoon- GF
    Delighted Disney Return Guest since 1981, DVC (BLT) since 2014


  9. #8
    Join Date
    Feb 2003
    Location
    runnemede nj
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    My then 4 year old DD had to have a heart surgery to repair a hole in her heart. I totally understand and sympathize with the stress you're going through. Best wishes and I'm sure everything will be fine

  10. #9
    Join Date
    Oct 2004
    Location
    Staten Island NY
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    6,959
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    Loads of and prayers on the way. Please let us know what they say.
    _________________
    Stephanie șoș
    Next up:
    11/11/11

    _______________

    'the only thing that counts is the love of duty; when love & duty are one, then grace is in you & you will enjoy a happiness which passes all understanding.

  11. #10
    Join Date
    Apr 2006
    Location
    New York
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    I know how hard that must feel to know you're daugther is having a hard time and there isn't anything you can do personally to fix it. Stay strong!
    Carribean Beach '95
    Wilderness Lodge '96 '97 '98
    All Star Music '00 '01 '04
    Off-site '03
    All Star Movie '05 '06
    All Star Music 07'
    Pop Century with DBF Sep 08'
    Pop Century with family March 09'

    Next trip: Disney and Universal Studios April 2015!

    PINK!

  12. #11
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    Apr 2004
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    Reno, NV
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    Kat is wearing a heart monitor for the next 24 hours. So we'll wait to see what that shows.

    They did another EKG and also an ultrasound, and they showed she has maybe SVT. supraventricular tachycardia. So we'll have to go in again next week to talk about the options.

    I sure wish she had inherited her heart from her dads side!!

    Thanks everyone!!!

  13. #12
    Join Date
    Apr 2004
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    new york
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    Good thoughts, prayers and strength is being sent your way! And, of course, loads of pixie dust!

    My youngest DS was born with a heart defect, but it fixed itself and you'd never know. But as a mother I watch him and second guess each and every move he makes. I understand the stress. Remain strong and know that you have support.
    10/91-Honeymoon YC Concierge
    6/92, 5/93, 9/95, 9/99-YC
    9/00-BWI,YC
    6/01-AKL,YC
    9/02-BCV,YC
    5/03-BCV
    8/03-WLV,BWV
    1/04-HH,BWV,OKW
    6/04, 5/05-BWV
    8/05, 11/07-SSR
    2/09-BCV
    11/09-BCV
    5/11-AKL
    4/12-OKW

  14. #13
    Join Date
    Jan 2006
    Location
    metairie, la
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    Keeping you and your daughter in my prayers.
    LORI

  15. #14
    Join Date
    May 2005
    Location
    Massachusetts
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    652
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    sending tons of prayers and pixie dust for you and your daughter. If you trust your former cardiologist why not call his office to see if he knows of any in your area. I know with my sons hemotologist he knows of others throughout the country from the "conferences" they go to. Maybe if you get a recommendation from your former Dr. it will help you feel better about the new Dr.. That being said I hope everything works out ok. It's good to let stress out keeping it in doesn't do you or your daughter any good. Good luck.
    Coreen

  16. #15
    Join Date
    Nov 2007
    Location
    Rhode Island
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    So sorry to hear about the problems your daughter is having with her heart. Sending as many prayers and pixie dust as I humanly can that everything works out for you. Please keep us up to date!
    ~*~Tonya~*~

    1st = 1992
    ASMo = Jan. 6-12 '07
    POP = Jan 5-11 '08
    BWV = Jan 6-16 '09
    BCV = Jan 12-22 '10
    BWV = Jan. 21-29 '11
    BWV = Jan. 21-28 '12
    BWV = Dec. 8-15 '12
    BCV/BWV=Jan. 24-Feb. 1 '14
    BWV = Jan. 16-24 '15
    BWV = Jan. 29-Feb. 6 '16
    BWV = Jan. 20-28 '17
    BWV = Jan. 26-Feb. 3 '18

  17. #16
    Join Date
    Mar 2000
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    Kansas, USA
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    Quote Originally Posted by jrkcr View Post
    Kat is wearing a heart monitor for the next 24 hours. So we'll wait to see what that shows.

    They did another EKG and also an ultrasound, and they showed she has maybe SVT. supraventricular tachycardia. So we'll have to go in again next week to talk about the options.

    I sure wish she had inherited her heart from her dads side!!

    Thanks everyone!!!
    I have SVT. The symptoms you explained in your first post are exactly what I experience. Most times after the long pause my heart then starts racing and my heartrate jumps up to 180-200 and can stay there anywhere from 30 seconds to an hour. I was diagnosed when I was 16 (I am 41 now). I have learned what triggers it for me and therefore have been able to lessen my symptoms. I also have learned some ways to get myself back into normal rhythm. I was recently placed on Digoxin because I was having surgery. I have not had an SVT episode since starting the Digoxin nor have I had any side effects from the Digoxin. I am considering staying on it but want to talk to my cardiologist first.

    Let me know if you have any SVT questions!
    ~Lisa aka Tinkermom

    DVC Member since 05/01

    Most Recent Trips:
    12/28/12-1/4/13 OKW to watch our son and his HS marching band on Main Street on NYE!
    7/13/12-7/17/12 Vero Beach & 7/17/12-7/23/12 WLVs


    Next up: 5/28-6/12 Vero Beach (Beach Cottage!)/Fort Myers/Treehouse Villas

  18. #17
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    Mar 2004
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    Arizona
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    Quote Originally Posted by jrkcr View Post
    Kat is wearing a heart monitor for the next 24 hours. So we'll wait to see what that shows.

    They did another EKG and also an ultrasound, and they showed she has maybe SVT. supraventricular tachycardia. So we'll have to go in again next week to talk about the options.

    I sure wish she had inherited her heart from her dads side!!

    Thanks everyone!!!
    SVT runs in my family. Mine started when I hit puberty. I was also a telemetry (heart) nurse for 5 years before I switched to the ER this past June. So, I'll give you some generic background information to hopefully help you feel a little better. I know it's hard to not worry when it's your child though.

    SVT is short for supraventricular tachycardia. It can also be called PSVT which is paroxysmal supraventricular tachycardia. The P is just a fancy way of saying it starts and stops on its own. The SV means that it starts above the ventricles of the heart (this is very important) and the T just means that it goes fast. (For your peace of mind, don't get it confused with ventricular tachycardia that you see on TV. Ventricular tachycardia starts in the ventricles and is the one they have to shock). SVT is not life-threatening in and of itself and she can live a perfectly normal, healthy life with it. It is an abnormality in the electrical system of her heart.

    The times that it sounds like her heart "stops" is actually called a "compensatory pause", and it is her heart's attempt to "reset" its own electrical system to a normal pattern. I know it sounds scary, but it is actually a good thing. From personal experience, I know that it seems like it takes forever for the next beat though.

    There are different ways to treat the problem. When I was initially diagnosed, they tried to give me different medications. They all had side effects that I didn't like. The biggest one was that they dropped my blood pressure too low. I felt worse on the medications than I did when my heart rate was 220, so for most of my life I didn't use any treatment. I was able to do everything I needed to do even when I had an episode. As I got older though, I began to feel it more. I saw a cardiologist that I trusted at the hospital where I worked, and he suggested a cardiac ablation. This is where they go in and find the spot in the heart's electrical system that is causing the problem and get rid of it. I had that done in 2004, and I haven't had any problems since then. Occasionally, I can feel my heart trying to go fast, but it can't.

    Some things you may want to consider, check out, ask about -
    1) Watch your daughter's nutrition. Being low in electrolytes, especially potassium and magnesium, will significantly affect her heart. You may want to ask the doctor to check her levels in case they are low. Don't just pump her full of them though, because that can cause problems too.
    2) Find out if she has mitral valve prolapse. This is an inherited condition that can cause tachycardia, and from one of your comments, it sounds like it may be a family problem.
    3) A good electrophysiology doctor in your area. These are the doctors that map out the electrical system in a person's heart. Educate yourself about this option because it is a permanent solution as opposed to your daughter being on daily medication. It does have its own risks though.
    4)A group of medications called beta-blockers and a medication called digoxin. These are common medications used to control the heart rate. Your daughter's cardiologist will likely have one medication that he recommends, but you should know about them when you talk to him in order to make an informed decision.
    5) The halter monitor may not pick up anything unusual if she doesn't have an episode while it is on. Don't be discouraged if that happens. The next best thing you can do is to call 911 if it happens again. As I said before, svt isn't life-threatening, but having an ekg that shows exactly what is going on while her heart is acting up while help the doctors tremendously, and paramedics will be able to get one on the scene. Explain the situation to them and they will understand. Before I spoke with the cardiologist at work, I did this exact same thing. It avoided a lot of extra tests that he would've had to do otherwise.

    Remember, this is just some general information and doesn't necessarily apply to your daughter. If you have any other questions, you can PM me, and I'll be happy to answer them for you.
    I'll meet you at the Rainbow Bridge.

  19. #18
    Join Date
    Mar 2007
    Location
    Virginia - 775 miles/12hrs from the magic
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    Prayers and Pixie dust coming your way!
    Let us know how things go.
    '09~Pop
    '08~Pop,CR
    '07~Pop,POR
    '06~WL,Pop
    '05~CSR, Pop, CBR
    '04~ASSp, ASMu, Pop
    '03~ASMo,POR,Poly
    '02~WL
    '01~ASMo
    '00~Off Site :0(
    '95~ASSp
    Sept 1991~Honeymoon~Off Site

  20. #19
    Join Date
    Apr 2004
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    Reno, NV
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    Smile

    Thank you all for the pixie dust, and especially for the medical info!!!!
    I thought it was such great info to have, I am printing out your posts.

  21. #20
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    Mar 2000
    Location
    Kansas, USA
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    Quote Originally Posted by jrkcr View Post
    Thank you all for the pixie dust, and especially for the medical info!!!!
    I thought it was such great info to have, I am printing out your posts.
    Let us know if it ends up being SVT. I chose not to have the ablation surgery (so far anyway) due to possible risks. Some of my SVT triggers are caffeine, not enough fluids, and not enough sleep and/or stress. As I have gotten older the SVT seems to have gotten more sensitive to caffeine to where I have pretty much cut out all caffeine (no teas, cola, coffee, etc with caffeine). I do indulge in chocolate occasionally though.

    I am a former RN and was able to catch my SVT on a monitor one time while I was at work at the hospital. I was lucky to be able to have it documented. I have worn a halter many times but the SVT nevers seems to occur while wearing it.

    Here is some more for your daughter (and you!).
    ~Lisa aka Tinkermom

    DVC Member since 05/01

    Most Recent Trips:
    12/28/12-1/4/13 OKW to watch our son and his HS marching band on Main Street on NYE!
    7/13/12-7/17/12 Vero Beach & 7/17/12-7/23/12 WLVs


    Next up: 5/28-6/12 Vero Beach (Beach Cottage!)/Fort Myers/Treehouse Villas

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