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Our new journey - Ectopic Atrial Tachycardia

Jun 06, 2008 - 1 comments
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My daughter has had a rapid heartbeat all of her life.  Her pulse rate was noted in her chart at every visit, but we were always reassured that we didn't need to worry about it.  There were even comments made that you could "see" her heart beating when looking at her chest, it beats so hard. She was active in dance, even dancing competitively, from the time she was 5 years old, up until she was 14.  She danced beautifully.  The only negative feedback we'd get from her dance coaches was that she lacked spunk and energy for the more difficult group dances.  My daughter would tell me that after the 3rd or 4th time of doing the dance "full out" that her arms and legs would feel like lead, she could hardly move...while the other kids would be goofing around and practicing spins...full of energy during breaks, my daughter would sit there , trying to catch her breath.  Same at school, when she got in intermediate school and had to run in P.E. She would be marked down regularly for having too rapid a pulse rate...not in the right range. As active as she was, and is, dancing 5 days a week, hours a day; doing cheer, P.E., she has NEVER built up her stamina.  We went to the doctor regularly, they diagnosed exercise-induced asthma and gave her an inhaler.  No help.  She was diagnosed with hypoglycemia...so we started giving her regular healthy carb snacks to keep her energy up...still not any appreciable difference.  FINALLY, this year, now that she's in her second year of high school and had learned about heartrates and healthy levels, she told me that her RESTING pulse rate was right around 160 to 200, depending on the day.  When she did any exercise, it would spike way up, and she'd get shaky, nauseous, her chest would hurt, she'd feel her heartbeat everywhere in her body, her throat would hurt and she'd get a syrupy liquid in her throat.  She also said she was having problems with blacking out, almost daily, at random times. So we went back to the pediatrician, who finally referred us to a cardiologist about 2 months ago.  The diagnosis: Ectopic Atrial Tachycardia.  After reading about the condition, the thing that struck me about it the most is that it's almost always diagnosed in infancy, or at least in the first few years.  My daughter is 15 and has been struggling with the effects of this condition all of her life, trying to explain that she really is trying her best at P.E., at dance, at cheer, at whatever physical activity she was participating in, but never really knowing why she couldn't keep up with the other kids. Now we're on the second medication they are trying.  The first one was Atenolol.  It lowered her heartrate to acceptable levels, but it made her so sleepy she couldn't function, she was blacking out more, extremely irritable and moody, forgetful and experiencing numbness in hands and feet.  Now we're on a second med and she's having her 3rd 24-hour holtor monitor test right now, to see how she's doing.  We go back to the cardiologist on Tuesday.  She's a bit more awake now, been cleared for her cheer squad, but still feeling a bit "leaden" when she exerts herself, and feels that her heart races and pounds harder than normal upon extended exertion.  She's also a bit depressed about the condition, its limitations, and the fact that even with medication, she's not as energetic as she would like to be, and definitely not on the level of most of her peers.  I would really like it if I could find out about other parents out there who have a child who was diagnosed late, like my daughter, and find out how they've handeled it and how they're doing. I'd like to know what she can expect, long-term, so she can relax a bit about her future.

Poem by my oldest daughter - trying to come to grips with her heart condition. (She needs a lot of encouragement right now!)

Jun 06, 2008 - 0 comments
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12765?1212770155
Heartbeat

Ba-dum…Ba-dum…
My heart,
A life drum beats.
Ba-dum…Ba-dum…
It’s counting down
Time left to me.
Ba-dum…Ba-dum…
Too fast,
It rushes on.
Ba-dum…Ba-dum…
Heedless of
What it takes from me.
Ba-dum…Ba-dum…
Every second,
I lose two.
Ba-dum…Ba-dum…
How many beats
Do I have left?
Ba-dum…Ba-dum…
I know I don’t have
As many as you.
Ba-dum…Ba-dum…
The needed strength
Is dwindling faster.
Ba-dum…Ba-dum…
My life’s clock
Is unwinding.
Ba-dum…Ba-dum…
How much longer
Until it stops?