Son Has Heart Problems

[jaymikechar]

My son is 16 turning 17 in a few months, within in the past few months he has been admitted to the hospital for heart problems. He often collapses as well as having surgery 4 times to fix his heart condition. He told me that he can feel his heart skipping a beat and i am worried. His cardiologist says he has bradycardia. Is this why his heart is reacting? What can i do as a parent???

[grendslori]

Maybe I'm stirring the pot here; I certainly do not mean for that to happen. I think that you are being a bit hard on jaymikechar. I am a mother who has raised a daughter with severe forms of heart disease who also had to have a pacemaker implanted when she was 8 years old. At 22 she had her 1st heart transplant and she is now being evaluated for a second new heart. I have worked in the cardiology field and have several close friends who are pediatric cardiologists. I am also the Community Leader here on MedHelp for the Pediatric Cardiology Forum for the support of parents and families who are dealing with children who have heart issues. I can tell you that the vast Majority of parents do not have the first clue about heart disease in their children. They gain it through years of experience and a need or want to learn and understand. They do not have the first clue of what questions they need to ask and the one they do know (will this kill my child?) they are too afraid to ask. It may come as a surprise to you to hear that many doctors do not handle things very well when it is their children who become sick with life threatening illness. Their knowledge prevents them from having peace of mind. Usually it is your seriously ill children who need the benefit of a major cardiac center because the rarest forms of heart disease are what the doctors see there; they also do the transplantations. A pacemaker being implanted can be done at most hospitals who have a good pediatric cardiology department; they do not necessarily have to be done at a huge cardiac facility. Having lived through what I have with my own daughter, I would have given anything to have had a pacemaker "fix" the problem she had so that she could get on with her life and enjoy it. When my daughter had her first pacer put in, she almost bled to death and the nurse can out of the room and told us they could not stop the bleeding and she had gone into shock. This family lost one son in a proceedure that should never have taken him from them. And now they are probably reeling from having to deal with this all over again. Maybe this young boy needs to be looked at for a genetic issue which caused his bradycardia; maybe it is not genetic at all, I have no idea; the point is that he should be safe now with this pacemaker inmplanted and his family should find some comfort in that.

[jaymikechar]

It's hard to adjust to son's new personallity. He plays music all the time now and hes dressing differently now. He also is getting new friends who i personally really think are bad examples for him.
Recently at night all he does is stay in his room, while before the surgery he would watch tv in the living room and now he is completely avoiding us. Any advice?

[achillea]

I am so sorry.  This must be awful for you.

[jaymikechar]

We have alot of information now, and my wive is a Emergency room doctor.

[achillea]

True heart pain is felt in the center of the chest.  People who feel pain there need to see a doctor now, not tomorrow.

I must admit that I am finding the situation you describe somewhat puzzling.  What's being discussed is very serious medically, the kind of thing that warrants full-bore, long-term treatment at a cardiac center.  Yet that does not appear to be the case here, even though you have indicated that (a) heart conditions run in your family, (b) that your wife is a doctor (what kind?), and (c) that in spite of this drastic history, your child continues to have horrible problems that you do not seem to understand at all.

I don't wish to be unkind, but in my experience, most parents of children with these kinds of problems--even people without a lot of education--quickly become *extremely* expert in gathering information about what's going on and what to do--especially if one parent is a physician.

[jaymikechar]

he is also describing a severe pain on the center of his chest, what does this mean