I'm sure he probably is pretty upset. Time will heal that for him, but he is living in the moment like all teens do. Obviously my daughter couldn't be active in sports either. One thing i did get her doctors to agree with, FINALLY, was to have horseback riding lessons. She LOVED that. (they didn't want her to do that because of the pacemaker wires possibly being broken if she fell). She also loved chess and to read and draw. Does your son like anything like that? I agree the more knowledge you have the more easily it can be explained to your son; usually if teens understand the 'why' they can more easily accept their situation. We told our daughter everything from the get-go and I have never, to this day, found a reason to regret that. Does your son like golf, bowling, pool or billiards, anything like that? You are going to have to learn to deal with the unanswered questions and that isn't always easy as a mother, especially. We deal with that all the time because transplanted hearts are still so new. I wish you well, Lisa, if you ever want to have someone to talk to on the phone, drop me a private message and I will give you my number; sometimes it helps just to talk and vent. take care
I am sorry that he has this diagnosis. It is very difficult, and it is something that both we and families deal with frequently, unfortunately. In the meantime, I would recommend that you discuss genetic testing with your pediatric cardiologist for Jeremy. As well, I would also look into ECG and echo evaluation of his first-degree relatives, which includes his parents (meaning you) and his siblings. Meanwhile, if the genetic testing is positive, the first-degree relatives can be tested for the specific mutation to ensure that noone else has it (or, if they do, to initiate further screening and counseling). If he is positive for a mutation but the other family members are negative, then they will no longer require continued ECG/echo surveillance. Best of luck with this.
Dear Lisa,
Your son's ECG has several different issues that may be abnormal about it. Without seeing it (or him) myself, I cannot address all of these issues in relationship to what he may or may not have. However, I can talk about these various topics.
First, his heart rate of 56 beats per minute is normal for age, as the normal heart rate range for someone his age is 50-100 beats per minute at rest. A premature atrial contraction (PAC) is an abnormal early beat that originates in the upper chambers of the heart. I cannot tell if he is actually having them, though, or is just having sinus arrhythmia, which is the ECG findings of the normal respiratory variation of the heart rate. As well, the anterolateral T wave changes may be real or may be artifactual. Unfortunately, ECGs are only okay for screening and have up to a 5-10% false positive rate, due to just these issues.
With regard to the LVH/LVE and the QTc prolongation, these also require actual evaluation of the ECG. The computer algorithms in these machines are far from perfect, and often overcall things. There should be at least 2 criteria on the ECG to demonstrate left ventricular hypertrophy (abnormal thickening of the left ventricular muscle), but often there is only one, which means that it's an overcall.
The QTc interval is one of many interval measurements that we evaluate on the ECG. If it is longer than a certain threshold, there may be a risk for potentially lethal arrhythmias. However, there is frequently a personal or family history of similar problems. The QTc interval should always be hand measured if there is a concern, as this is the hardest thing that the computer measures (hence the overcalls here, as well). Therefore, having this study and your son evaluated by a pediatric cardiologist should be able to put the ECG findings in context and assess if there is true risk to him, or not.
He is upset and bummed out. He had just made the varsity football team and was running track, so he is not happy that he can't play. We just keep pointing out that he has a lot that he can still do, even without competitive sports. It will be easier when we have some idea of what we are looking at and can relay that to him. Right now we still have a lot of unanswered questions... I suppose that is part of the territory with something that is fairly rare.
How is Jeremy feeling? I am also here to support you as well. Take care
Thank you so much for your response. I posted another question before I realized that you had written back. I am sorry about that.
We went to the Cardiologist today and on the repeat Echo they confirmed non-compaction cardiomyopathy, but could not offer us much information on it. His heart still showed weak muscle contractions and an enlarged left ventrical. They are going to start him on meds, but are not sure if his activity needs to be limited. We are waiting for him to call us back with more information, but he stated that he does not know a lot about this condition.
We will def. have Echos performed on the rest of the family. I have already had an ECG and Echo that only showed mild MVP and Sinus Tach.
Thank you again!
Lisa
We took Jeremy for his Echo and ECG last week. The ECG was normal, but the Echo did confirm Cardiomyopathy. The ped. cardiologist took his tests to the Children's hosp. to have the diagnosis confirmed and just called us back with the information. We see the specialist again on Wed. to start medication and find out long term care. I am struggling with how to tell him that he can no longer play football or track... Not what a teenage boy wants to hear when he just made the varsity team for football...
Basically we are still in shock from the diagnosis.