Ectopic Atrial Tachycardia

[Liz0817]

My daughter is one month away from turning 17. Long story kinda short (but not really):
>December 2007/January 2008 daughter started feeling exhausted, achy, irritable, general malaise
>January 2008 during frequent trips to the school clinic, the nurse discovered her heart rate was extremely fast
>January/February 2008 began many trips to various doctors; checked for lupus, MS, RA: diagnosed with depression, mild anxiety disorder and Fibromyalgia. Rx prescribed for depression and anxiety it helps, but fibro was still an issue
>February 2008 still no relief from exhaustion and pain; heart rate fast more often and accompanied by chest pain
>March 2008 diagnosed with an extremely bad recurrance of Epstein-Barr virus (mono), which we didn't know she had previously. (Dr said could have manifested as a cold or what seemed like a 48 hour bug.)
>March 2008/2009 diagnosed with what the pediatric cardiologist called "a really fast heart rate" after 12 lead, echocardiogram and 24-hr Holter
>March 2008 to March 2009 continued follow-up with pediatric cardiologist while he "watched her heart"; heart rate continued to be fast, eventually affected my daughter's activity level
>One Saturday in March 2009 heart rate reached 147 bpm and stayed there for a few hours; called peds cardiologist; instructed to go to hospital ER, have them do a 12 lead and fax him the results.
>ER doctor faxes 12 lead; we're instructed to make appointment with peds cardio for beginning of following week along with the suggestion we ask peds cardio to refer us to cardiologist who could do electrophysiological map of her heart.
>Tuesday after ER trip, in peds cardio office, relayed suggestion about mapping to peds cardio and he immediately dismissed the idea and attempted to "placate" us by suggesting we do 2nd 24 hr Holter and then put her on beta blockers. Left with Holter monitor in place.
>Husband and I discussed at home and decided there's no way we're putting our teenaged daughter on beta blockers without a diagnosis beyond "She has a really fast heart rate."
>I prayed a lot for guidance; decided to call Children's Health Care of Atlanta "Care Line" for some help and they referred me to their Sibley Cardiac Center; Sibley CC miraculously had a cancellation the next day with one of their peds cardiologists and I snatched it up. (Turns out this doctor specializes in electrophysiology and pacing. Thank you Lord!)
>After only 1 hour in her office and a couple of tests later new doctor says "I know what it is. Ectopic Atrial Tachycardia."
>Get urge to kick (really hard) 1st peds cardio after new cardio doc told us a year with a rapid heart rate was too long and she needed to do an echo to be sure the heart wasn't damaged. Fortunately, no damage. Cardiac cath was scheduled for about 10 days out.
>April 15, 2009 Cardiac cath done with mapping; several nodes found; ablation attempted with NO success. Dr believes nodes are deeper in heart muscle than she originally thought and when she used small tip for ablation all it did was irritate muscle so that when she switched to larger tip it was unable to reach nodes. Overnight stay in cardiac step-down unit as a precaution. Major disappointment for daughter whose life has been totally put on hold due to extreme exhaustion all the time.
>Sent home with Rx for beta blocker. Positive result for a while then lost effectiveness.
>2nd Rx started. 24 hour Holter monitor worn three weeks after new Rx started. Results were slightly alarming (bpm got to 132 at certain points) so Dr is submitting paper work for 2nd cardiac cath knowing she'll need to use the large tip right off the bat.

We had to pull her out of regular high school spring semester of junior year because she was missing so much school and we enrolled her in a combo private school/home school program. It worked out really great and she ended up with a 91 average.

Now she's about to begin her senior year and we're sticking with the same program. She's very depressed because on her 17th b'day next month she had wanted to join the Naval Reserves (delayed entry) so she could get help with college costs (she wants to be a doctor). She also wanted to start visiting colleges with ROTC programs and putting her "plans" together. Poor kid is in this horrible state of limbo.

My husband and I are exhausted ourselves because she's terrified that her heart is going to go haywire and stop beating; therefore she doesn't want to be alone more than the hour or so it takes for us to run errands. A mixed blessing happened last December when my husband was laid off from AT&T; he's been able to be home with her. She's been sleeping on the couch because she can't get comfortable on her bed and she insists one of us be down there with her every night because of her fear her heart is going to stop. Needless to say this is putting a real strain our marriage.

We are literally sick with worry that this 2nd cath isn't going to work, especially since the meds aren't working either. We're obviously concerned about her health and well-being first and foremost, but I'd be lying if I didn't say we also want a semblence of our former lives back. (I hope that doesn't sound as selfish as it makes me feel.)

Does anyone have any similar experiences with surgery not working, meds not working, etc? What do we do next if surgery fails again? Would appreciate some information if you have any.

Sorry this was so long, but the whole story is so intertwined that's it's hard not to tell it and have other people know what's going on.

Thanks for listening.

Liz




This discussion is related to ectopic atrial tachycardia.

[grendslori]

You have described yourself as being 'very, very sick'. I do not see it that way, probably due to my own daughter's illness. I classified her as being very sick; even the pediatric clinic where she was going to referred to her 'as the sick one'. She had Juvenile Rhuematoid Arthritis at 3, a stroke at 10, kidney problems, a coagulopathy, restrictive lung disease, Steven Johnson Syndrome, and heart disease: SS,RBBB,LBBB,NSVT,A-Fib,Maheim Fiber, and a VERY SEVERE form of heart muscle disease called Hypertrophic Cardiomyopathy. Chest pain caused by acual heart disease ruled her life, literally. She could walk from one side of the room to the other without chest pain because her heart walls were so thick there was no bllod supply to the heart muscle. She had her first heart attack at 12. She was dying at your age and she finally got a new heart; even with the new heart she has been in Congestive Heart Failure 5-6 times. As I write this right now her EF% is only 15% (normal is 50-70). This heart is beginning to fail. By the time she was your age she had been in the hospital 48 different times and to the ER more times than I care to count. Even with all of that going on, she never asked either my husband, or myself, to stay with her, and there have been many times when she thought she was dying. Only once have I known her to ask someone to stay with her; she was in the hospital and she asked her doctor to stay with her when he admitted her, because she was scared she was going to die. They had to shock her heart. I'm not saying that you should not feel the way you do, what I am saying is that there is/was no reason for you to have placed the added stresses onto your parents the way you did, you weren't even close to dying from the rates that you have described in your letter. I understood your mother's letter and her frustrations about what was happening to you and to her relationship with her husband. I have been there myself. The toll in just the hospitalizations, being hundreds of miles from home and having to leave my husband to fend for himself, to leave my other daughter with friends, it put me on a major guilt trip; I had to do all that to take care of a sick child. It came with a heavy price.

[grendslori]

I read your reply, to what I wrote to your mother, a few weeks ago and have decided to try and help you to understand a few things. Understand as you read this that I am not trying to make comparisons here in the things that I'm writing. You are young and to blame you for your way of thinking would be to blame you for being young. You have never been married to the degree that your parents have been. You do not understand the need for a husband and wife to be together and to have the privacy and peace in their bedroom and I am not just talking about a sexual relationship between the husband and wife, I'm talking about uninterrupted time spent with your spouse. Your mother wrote about this situation putting a real stain on her marriage. Your parents, like all parents, are raising you, for you to leave home;  they will still be left behind trying to repair a marriage that had become focused on you......when you are leaving. You seem like a bright young person so I'm figuring that you can see where I'm going with that. health issues in chidren can become overwhelming for the parents and can also become extremely exhausting, which your mother clearly made evident in the posting that she did on here.  

[DamselInDistress0817]

Hi there, my name is Linda and at the the time this post was written by my mom I was a month away from turning 17 and at one of the worst times in my life. I'm not commenting on this post to call you out or yell at you or anything like that, just simply to correct you. When I read your comment to my mother it made me cry. The 2 and a half years that I was incredibly sick with this condition were devastating to my family. My resting heart rate was in the 140's, with any slight movement it would increase into the 160-180. I would wake up in the middle of the night with severe chest pains not from anything else except for the fact that my heart was beating uncontrollably fast and could not slow down. I would be in the ER 3 nights out of the week on average at my doctors recommendations. I was not correctly diagnosed with ectopic atreial tachycardia until april 2009, which is over a year after I first became sick. After the correct diagnosis was made I had an ablation, which did not help because the tachycardia was so out of control. At that point I was put on 2 beta blockers together at the highest doeses possible, with no affect. In August 2009 my doctor had to do another ablation. This time there were some good results, but only for about a week. In October 2009 after my heart continued to get worse, my cardiologist put in the hospital for a few days to run some tests and talk about a pacemaker. They ultimately decided against the pacemaker but I want you to know how serious things got for me. I was told by my cardiologist that it was a miracle that my heart wasn't seriously damaged by the time I had gotten to her. This wasn't just some small incident like breaking an arm, I was very very sick. And for you to tell my mother that "Her heart problem is not enough of a problem to cause all of this worry and chaos in your life" really makes me sad, because seeing that you and your family have been through something as well makes my heart break for you and I wish that bad things would never happen. For me, having to go through this was hell. But now my life is moving along much better. I'm still in the homeschooling program and I graduate in December. I have all the friends I need. The ones that stuck around have been fantastic, and the ones who chose not to stick around I chose to "addios and thanks for the memories". I want to go to school and major in biology and then continue onto medical school and study to become a pediatric oncologist. I hope this post will give you some insight on what life was like for me and my family then and I hope you'll why what you said to my mom really bothered me like it did.
I hope all is well with you.
Sincerely,
Linda

[grendslori]

You and your husband need to get back in bed together and explain to your daughter that she is not going to die from this. The truth of the matter is her heart rates aren't even that high. She is in a fast tachycardia , but she hasn't even reached a range where they usually do the ablations that you normally see (rates of 160+) which is a Supraventricular Tachycardia which can run over the 200+ bpm. You daughter is more than likely not having a cath done, but an EP Study in which the doctor tries to map out the problem by trying to start an arrhythmia going so that he can ablate the tract causing the problem. If the tract isn't 'active' on that day, no matter how hard they try, they will not be able to find it and they won't be able to ablate it and the problem will continue on. A cath is a study of the coronary artery system and the blood pressure systems of the heart, it's not an EP Study. You daughter is not suffering from heart-related chest pain. She may not agree with me on that one, because to her, that's what's happening. Truth is, Coronary Artery Disease takes at least 20+ years to become a problem causing chest pains. it takes that long to develop plague in the coronary arteries. Your daughter hasn't lived that long yet. The second reason for a child/teen to be having TRUE chest pain (and this is EXTREMELY RARE) would be if she had a severe form of Hypertrophic Cardiomyopathy in which the heart wall was so thick it had outstripped the bloodflow to the muscle. Obviously you would know if that was a problem. You daughter needs to get back in regular school and live her life, take my word for it, it's the best thing for her. If her classmates discove she has a heart problem that is causing her to be home schooled, or laying around on a couch, wearing monitors etc. they will disappear. They will leave her behind and she will be left with no friends. Teens don't do well in dealing with a teen who has heart disease; it forces them to realize there is the possibility of death, even at a young age. Your daughter may not realize this, but what she will pay is not worth the worrying over the 140 bpm. Get her back into life now, before it's too late and you and your husband NEED to go back to the time before all of this started or your lives as a couple will be no maore. Her heart problem is not enough of a problem to cause all of this worry and chaos in your life.

[fedup100]

After I turned the computer off last night, I thought of something else. Has your daughter been tested for thyroid dysfunction? A hyperthyroid can cause tachycardia and anxiety along with a host of other symptoms. Most doctors just test TSH. Also ask that they test her free T4, free T3, thyroid antibodies and possibly TSI (this is to check for Graves' disease).

As I was praying for your family last night, the following scripture came to mind: "But now, this is what the Lord says --- he who created you, O Jacob, he who formed you, O Isreal: 'Fear not, for I have redeemed you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned: the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Savior.'" Isaiah 43:1 -3

This is a very difficult time (an understatement I realize) for your family. God wants you to know that He is with you and He will not leave you or forsake you. You are in my prayers.

[fedup100]

I do not know if this will help or not, but my fibromyalgia was caused by gluten sensitivity. When I started a gluten free diet, my pain and fatigue diminished considerably. There is a a gastroenterologist from New Zealand that has discovered that symptoms from gluten sensitivity cause problems with the nervous system. This diet is difficult to follow but it may be something you want to try. It is risk free and perhaps it would help your daughter feel better. There is more and more research connecting multiple medical problems with gluten sensitivity.

I hope this helps. I will be praying for your daughter. Please keep me posted.