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Heart Rhythm Conditions – Welcome to the group
Heart Rhythm Conditions | Last Active: 4 hours ago | Replies (969)Comment receiving replies
My daughter who is 11 has been having fast heart rates for over 2 yrs now. They pound so hard you could see it. The first and only time a doctor saw it was a field day and it was going so fast she couldn’t get it. She sent us to get an ekg and a referred us to a ped cardiologist. The ekg said Long qt. The cardiologist said just a glitch no way she had that. Now over 2 years later 3 different cardiologist, multiple heart monitors which showed beats over 200, tachycardia, sinus rhythm, and on a beta blocker for over a year we still have NO diagnosis. She repeated a stress test Good Friday in which the doctor said SVT. But all 3 cardiologists all say no. She even had one of those doctors tell us it was normal to have fast heart rates and nothing was wrong with her. Really? Never heard of that being normal. She was tested for Lyme 2 years ago after having a tick on her stomach after visiting an animal shelter. She’s been misdiagnosed with pheochomocytoma and a benign tumor on her brain. Why is it 3 doctors in 2 different states can’t figure this out. She has no energy but wants to play sports. She’s also afraid her heart will start pounding again and will have to quit. Somebody please help us figure this out. Getting her retested for Lyme this week. Any and all suggestions are welcomed.
Replies to "My daughter who is 11 has been having fast heart rates for over 2 yrs now...."
Hello @rkincaid
I see this is your first post on Connect and I would like to welcome you. I can imagine your concern for your 11 year old daughter and I can also understand her concern about having such a fast heartbeat. As we are not medical professionals at Connect, the best we can do is to offer you our support and encouragement.
Since you visited these 3 different cardiologists in 2 different states, it sounds like you are certainly doing your due diligence in looking for a diagnosis and some answers. You mentioned, however, Lyme Disease. Has she seen an infectious disease specialist?
Wishing you well in your search for answers. I look forward to hearing from you again with updates.
Teresa
Hello @rkincaid -- Have you looked into genetic testing? It's how my daughters Long QT Syndrome was diagnosed. She was diagnosed and treated at Mayo Clinic.
Mayo Clinic Led Study on Long QT Syndrome Sheds Light on Genetic Testing
-- https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-led-study-on-long-qt-syndrome-sheds-light-on-genetic-testing/
-- https://www.youtube.com/watch?v=_yUqzGumxzo (YouTube video)
NIH - Genetic testing for long QT syndrome and the category of cardiac ion channelopathies
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3392134/
GeneDX - Tests Available:
-- https://www.genedx.com/test-catalog/disorders/long-qt-syndrome-lqts/
Hope you find some answers soon.
John
Connect
As a mother, my heart goes out to you. Having fast heart rates and feeling your heart pound like it is going to jump out your body, or feel it trip now and again, is very, very stressful. My heart started doing that when I was 27 and now I am 67. So for 40 years I have had it off and on. I have learnt to live with it. I have never taken any medication because my doctors say it is benign. I have played tennis all my life and have never had any problem with sports. I have had three c sections, and several surgeries and never had a problem. So I am sorry I cannot suggest any course of action other than letting you know my experience. It might help you relax at least a little bit.
I have been following this blog: there are a lot of people who suffer the same problem. They suggest magnesium, which I take. I also take CoQ10. Please, keep os updated of her progress. Loli