Heart arrhythmia at 14...
Hello,
I haven't done much on this site but read all of the very interesting things going on and enjoying everyone's pictures. Of course posting lots of pics of my handsome son. But now I feel like I need to post this to see what everyone else thoughts are or have information about severe heart arrhythmias in a 14 yr old boy with DMD. Brandon lives in El Paso with his Dad and his Step-Mom Catie, she's a member too (Momma Too), we stay in very close contact with each other because of Brandon and the distance, I am in Alabama. Brandon went to the Doc 2 weeks ago today for his heart exam, he was just there in September. The Doctor told Catie he has a severe heart arrhythmia, she being an ER nurse said that when she heard his heart beat, it didn't sound right, kinda had a "click" to it and a sideways beat to it as well. He said it was much weaker since the last visit. Even to the point that he asked her "What do you want to do?" and also said "We will do what we can for as long as we can." I do not understand any type of medicine or the human body, although it is very interesting to me, I love it. Catie can explain things to me so that I can understand it better. She and I both are just floored about his lungs being fine (or no changes) but his heart being as weak as it is. Brandon has been put on a "self limited" status, not alot of physical activity. Which hasn't been a problem since he become wheelchair bound. Catie and I talked for 1 1/2 hours last night, neither of us can figure out why it's his heart first and not his lungs, most studies and things we read talk about the lungs having problems before the heart. We know that not every child will follow the same steps with this horrible disease, but the heart first, at 14? It's not supposed to happen like this, right? They have put him on Coreg. I was just curious if anyone has heard of the heart being affected this, badly this early. Or anyone's thoughts on it all. Any information would help Catie and Myself alot right about now.
Thanks in advance.
Catriena Wheeler
I haven't done much on this site but read all of the very interesting things going on and enjoying everyone's pictures. Of course posting lots of pics of my handsome son. But now I feel like I need to post this to see what everyone else thoughts are or have information about severe heart arrhythmias in a 14 yr old boy with DMD. Brandon lives in El Paso with his Dad and his Step-Mom Catie, she's a member too (Momma Too), we stay in very close contact with each other because of Brandon and the distance, I am in Alabama. Brandon went to the Doc 2 weeks ago today for his heart exam, he was just there in September. The Doctor told Catie he has a severe heart arrhythmia, she being an ER nurse said that when she heard his heart beat, it didn't sound right, kinda had a "click" to it and a sideways beat to it as well. He said it was much weaker since the last visit. Even to the point that he asked her "What do you want to do?" and also said "We will do what we can for as long as we can." I do not understand any type of medicine or the human body, although it is very interesting to me, I love it. Catie can explain things to me so that I can understand it better. She and I both are just floored about his lungs being fine (or no changes) but his heart being as weak as it is. Brandon has been put on a "self limited" status, not alot of physical activity. Which hasn't been a problem since he become wheelchair bound. Catie and I talked for 1 1/2 hours last night, neither of us can figure out why it's his heart first and not his lungs, most studies and things we read talk about the lungs having problems before the heart. We know that not every child will follow the same steps with this horrible disease, but the heart first, at 14? It's not supposed to happen like this, right? They have put him on Coreg. I was just curious if anyone has heard of the heart being affected this, badly this early. Or anyone's thoughts on it all. Any information would help Catie and Myself alot right about now.
Thanks in advance.
Catriena Wheeler
Replies to This Discussion
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Permalink Reply by Michelle Scaglione on
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Hi Catriena
Did your son have an echo cardiogram or a cardiac mri to see whats going on? Is he on any medication for his heart before his last visit? Does he take steroids? My son has a very fast heart rate. It can go to 126 beats per minute.
Michelle
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Permalink Reply by Ann Avery on
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Yes, I have heard of guys that young with severe cardiac involvement. Is he on the "big 3" cardiac meds used in DMD?: Digoxin, Enalapril, and the Coreg . Actually, and this sounds so bad......I would rather have my child's heart just stop rather than suffer through respiratory distress. Left ventricular hypertrophy just means the heart wall thickens and cannot beat as efficiently. A friend of ours said he felt "funny" and then his heart just stopped and he died without any pain. (he was 28 with dmd) Another thing I have noticed is that the 3 I know with dmd who died of heart failure at an early age were overweight, which placed an additional strain on the heart. I just know we Moms must stick together to support each other, and you are so fortunate to have such a close friend, even though I am so sorry you have to go through this. I just hope for the best and we must live each day with our sons to the fullest we can. By the way, my son is 28 and uses non-invasive breathing aides. His heart is "not the best" physically, but bigger than the galaxy when it comes to loving life and people. Another mom, Anna
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Permalink Reply by Ian Anthony Griffiths on
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I had heart problems diagnosed in 2007 as well as DMD, im 25 this july. I have cardiomyopathy and am on Digoxin, ACE inhibitors and beta blockers with a mild dueretic (sp?). I find it far more frightening than my breathing muscles getting gradually worse my ventilator helps that. None of the drugs make me feel like I can take my mind off my heart for a second. On a bad heart day I can't do much at all with out sweating and feeling it beat oddly. Theres not much I can do, even with the drugs. With the heart being affected first before breathing might be due to the fact that the lungs are not muscles whereas the heart is a continously used muscle. The breathing is affected due to several weaking muscles that might be degenerating slower. Just my opinion here.
Sorry to hear he has heart trouble so early.
take care
Ian
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Permalink Reply by Tammy on
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I just wanted to comment on this subject. My sons heart condition was found very early on, he was just a little guy. It was also before he went on steroids and the Dr.s were saying "its too soon". Josh was at that time a healthy thin size...before steroids. The steroids didn't help his heart at that time...I wish Drs did more back then...but they didn't. I also feel the heart should be looked at in some boys before steroids are started. My son was a very healthy size when his heart condition was found...as I said genetics... where the boys deletions are plays a viable role in what is effected and how in our boys. After Joshs heart transplant ...he could get rid of all that fluid.
Ann Avery said:Yes, I have heard of guys that young with severe cardiac involvement. Is he on the "big 3" cardiac meds used in DMD?: Digoxin, Enalapril, and the Coreg . Actually, and this sounds so bad......I would rather have my child's heart just stop rather than suffer through respiratory distress. Left ventricular hypertrophy just means the heart wall thickens and cannot beat as efficiently. A friend of ours said he felt "funny" and then his heart just stopped and he died without any pain. (he was 28 with dmd) Another thing I have noticed is that the 3 I know with dmd who died of heart failure at an early age were overweight, which placed an additional strain on the heart. I just know we Moms must stick together to support each other, and you are so fortunate to have such a close friend, even though I am so sorry you have to go through this. I just hope for the best and we must live each day with our sons to the fullest we can. By the way, my son is 28 and uses non-invasive breathing aides. His heart is "not the best" physically, but bigger than the galaxy when it comes to loving life and people. Another mom, Anna
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