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Son Has Heart Problems
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???
My son is getting better, because he has talked to his guidance counselor at school. he now is involved with tennis. He is just happy to wear a sports uniform, he is allowed to also play baseball which he's played half of his life. He has those days where he's all upset but he gets over it and takes his dog out for a walk.
Please, look into Postural Orthostatic Tachycardia Syndrome (POTS). It is a nervous system disorder that prevents the body from being able to properly adjust to the pull of gravity. Symptoms primarily include: rapid heart rate upon standing, dizziness, and fatigue. Other symptoms can include: irregular blood pressure (high or low), heavy and weak legs, shortness of breath, inability to exercise, extreme thirst, tremors, flushing, gastrointestinal issues, etc. Symptoms can change daily and range from mild to debilitating from person to person affected.
I could go on and on, but I will spare you. I just want this information to be out there because I and so many others suffered in silence for years. Majority of doctors are not familiar with this illness yet, so misdiagnosis is common, especially since all tests show normal results: EKGs, ultrasounds, echos, etc.
For more information, I recommend visiting:
http://www.dinet.org/pots_an_overview.htm
Also, feel free to message me or visit the groups on Facebook. Just search Postural Orthostatic Tachycardia Syndrome and POTS and they should come up.
Thank you, and best regards.
Brandi
I could go on and on, but I will spare you. I just want this information to be out there because I and so many others suffered in silence for years. Majority of doctors are not familiar with this illness yet, so misdiagnosis is common, especially since all tests show normal results: EKGs, ultrasounds, echos, etc.
For more information, I recommend visiting:
http://www.dinet.org/pots_an_overview.htm
Also, feel free to message me or visit the groups on Facebook. Just search Postural Orthostatic Tachycardia Syndrome and POTS and they should come up.
Thank you, and best regards.
Brandi
The best advice I can give you is to understand you cannot change your son. You can work with him to try and help him wok through what he is going through but you can't change how he is feeling and behaving. What happened to him is very traumatic. Not only did he loose his main passion he was also pretty much told he has a bum heart. It is a lot to take at a very formative age with hormones raging. I again suggest you try to find a counselor to help him work through what he is feeling. Music is a good outlet but he may have shut down a bit because he just doesn't know how to process all this change and having heart issues and a good counselor may help him work through what he is feeling. In the minimum try to sit down with him and let him share his thoughts no matter what those thoughts are. He may or may not be able to open up to you but allowing him the opportunity to express how he feels may get him to open up to you a bit. He may not understand that your motives were obviously to keep him healthy and well until he works through his upset at his loss of sports and new life of dealing with heart issues. I don't begin to know what is best for raising a child and especially in a case such as yours which is why I suggested bringing in a counselor but sitting down and having frank conversations sometime can help to clear the air. But do remember your sons feeling will likely not match yours. You very well would handle what he is dealing with differently but he is not you and his feelings are what he is feeling whether good or bad. And it is important to acknowledge any bad feelings so he can work through them and move towards healing. But again, I also know it can be difficult to talk to teens so you may indeed want to consider counseling. I do wish you the best of luck. It is hard enough raising kids let alone having to also deal with health issues and stress at work must be a bit overwhelming to you. My heart goes out to you and your family that you are able to make your way safely through all this. Take care.
I never tell Jay to shut up, I have a system and I grew up in India, and my parents were really poor. I had to do my hardest to earn what l got because we had such low money. I teach all of my kids the same. If they get a good grade In a class, I reward them and that's it. I've bought him the drums and I'm setting them up in his room, the keyboard he wanted was expensive so I told him just to play the one we have in the basement for now. I never said anything that bad to my son, but with work, it gets stressing alot
"Maybe I'm stirring the pot here"
Yes, you are. I have posted very little about my private life here, so you don't know me at all, but I have a now-adult child who has suffered from a rare and very serious illness for over a dozen years.
Like the the other parents I know whose children have the same affliction, from the get-go, I threw myself to learning--in depth--all that was and is available about this difficult and mysterious illness. I do not know one other parent who has taken a passive approach and remained uninformed. Not one.
Yes, you are. I have posted very little about my private life here, so you don't know me at all, but I have a now-adult child who has suffered from a rare and very serious illness for over a dozen years.
Like the the other parents I know whose children have the same affliction, from the get-go, I threw myself to learning--in depth--all that was and is available about this difficult and mysterious illness. I do not know one other parent who has taken a passive approach and remained uninformed. Not one.
Advice?? Okay, here is some for you to consider. (I am basing this on the comments my teens gave to me once they became adults)
1) ALWAYS make sure they understand that you are there to listen to them WITHOUT speaking back to them and especially NEVER pass judgement on what they are telling you; you do and they will never talk to you again.
2) Always make sure they have a quiet time with you; I used to lay down across my bed with each one of my children singley and close the door; no one disturbed us and we would talk about everything. It is very important to let teens know that you are listening to them without the interruptions. Teens don't talk to their parents because they feel like they are not being heard; parents spend too much time trying to defend their position as parents, rather than just listening.
3) If you do this, stop: if you have ever told your teens to shut up, you have laid down a foundation for teaching them that what they have to say was not important. As a result, the parent asks: "Why doesn't he talk to me?" See where I'm going with that?
4) I'm sorry, but you missed my point about buying him the drums etc. Buying him the musical instruments was to help him to adjust to a new activiy; it was not suppose to be given as a reward for keeping up his grades. If he is a good student, then he already understands how important the grades are to begin with. This is ONLY one time of doing this; it is not spoiling him. It is giving him a new focus in his life. Please reconsider.
1) ALWAYS make sure they understand that you are there to listen to them WITHOUT speaking back to them and especially NEVER pass judgement on what they are telling you; you do and they will never talk to you again.
2) Always make sure they have a quiet time with you; I used to lay down across my bed with each one of my children singley and close the door; no one disturbed us and we would talk about everything. It is very important to let teens know that you are listening to them without the interruptions. Teens don't talk to their parents because they feel like they are not being heard; parents spend too much time trying to defend their position as parents, rather than just listening.
3) If you do this, stop: if you have ever told your teens to shut up, you have laid down a foundation for teaching them that what they have to say was not important. As a result, the parent asks: "Why doesn't he talk to me?" See where I'm going with that?
4) I'm sorry, but you missed my point about buying him the drums etc. Buying him the musical instruments was to help him to adjust to a new activiy; it was not suppose to be given as a reward for keeping up his grades. If he is a good student, then he already understands how important the grades are to begin with. This is ONLY one time of doing this; it is not spoiling him. It is giving him a new focus in his life. Please reconsider.
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.
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?
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?
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.
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.
he is also describing a severe pain on the center of his chest, what does this mean
I'm not into spoiling my kids either, I toke him out today to see what he liked, and I told him if he can keep his grades in school in straight As like usual, he could get it. My wife and I know about the list but we don't want our son to know, because both don't want him playing sports anymore. It's to risky and It may seem we are being over protective but I don't want him breaking something in the pacer and ending up having to go under surgery again.
Go out WITH your son and try and find a drum set and keyboard that he likes and, if possible, let him pick it out. I am NOT into spoiling kids, but there are a few times it is better to do this. What he is asking for will lead him down a whole new path and will probably help him. Get him into seeing someone, not just someone with a degree but get him help from a pyschologist who SPECIALIZES in life changing counseling. This is very important, especially with him being a teen-ager. The hospital social worker can usually tell you who to see for this. Several years ago my daughter was in the hospital for a Grade III rejection for stopping her meds needed for her new heart. We thought we were dealing with this alone; that we were the only ones having to go through this depression she had. Some of the doctors were pretty curt with her, angry, if you will, but her new transplant doctor was not only compassionate but had the insight to tell her that they had had several teens and young adults in their twenties who just quit taking the life saving meds and no one knew WHY this was happening. Would she tell him WHY? She sat up all night trying to figure out the answer and when her doctor came in the morning she told him if he would sit down and listen, she would give him the answer he was looking for. She told him that young children go on to be children after their transplant and that adults who have been given transplants go back to the life they had before their transplants; they go back to work they go back to doing all the things they did before, but for the teen who has prepared himself for death, he does not see himself having a future, he lives for the day and therefore when he gets his new heart, he doesn't know what to do with that future. From that day forward ALL teens heading for transplants go through extensive counseling. Ironically, my daughter never got that same counseling, not until recently and now she is a different person because of it. Your son will definately be going through a depression, but it sounds like he is already starting to feel a way out through the music. The American Heart Association, I believe that who has this, has a list of all of the pediatric heart conditions and the sports allowed with each of those conditions. There are a few forms of heart conditions/diseases which allow no sports such as the cardiomyopathies, but most conditions do allow some forms of sports. Have you asked his cardiologist about the sports he can be involved with? Take care
What i think is hurting him is that he wanted a college scholarship for athletics, Eversince he learnt all of this his music interests went sky high, tonight during dinner he asked me and my wive if he can get drums and a keyboard. To get his mind off of sports, I try to spend time with him as much as possible
I think it has hit him how much this is going to affect what he wanted to do with his life. It is going to take some adjustment on his part to find the good in all this. His life isn't defined by his sports play but right now he sees it that way. Like Achilea said, a talk with someone might help him to see that but he will definitely need some time to readjust how he sees himself and his world. When he has had time to process all of this help him to find other things in life he can be passionate about. This is a very tough thing for him so give him some time to come to grips but also keep an eye on him and get him help if you can. My heart goes out to you and your son.
I really think he needs psychiatric help, it seems like He's always sleeping now. When he's awake he will only talk to himself but about his brother and stuff like that. He got discharged yesterday, and he hasn't done anything but stay in his room and listen to music. I have no clue why he's so upset all of the sudden.
It's easy to understand how this kind of thing could make a kid depressed, but If you even suspect that he might be thinking about suicide, you must talk to your wife about this today. Since she is a doctor, she can probably get your son psychiatric help very quickly, which could be terribly important.
He really hates everything now. He hasn't talked to me or my wife ever since yesterday when we both said contact sports are over for him. Im afraid of what he's going to do to himself
Hello again. I can tell you that he wasn't passing out with rates of 43 beats a minutes it probably was dropping much lower than that; there are MANY people walking around with rates in the 40's range ( I saw it all the time when I worked as a tech). I could be that your son has Sick Sinus Syndrome where the sinus node that sends the primary first impulse down through the heart was "sick' and could not keep up with the exercising your son was doing while participating in all of ythe sports activities. Have to go for now. Take care!
His rate awake used to be 43, and when he slept they were down to his low 30s. He was really scared before the surgery and he denies it even though my wife rachael and I already knew about it long ago. Jay couldn't sleep afterwords either, a dr had to give him something too, but he thinks something isnt right. He grew up on athletics having brothers being allstars he hates his days are gone.
I'm sorry you are having to deal with this situation. One of the hard parts about dealing with a teen going through the teen years is that they all feel they will live forever. You made mention that the son ou lost was a great big brother and that he died as a result of a pacemaker proceedure; can you just imagine how scared your son was prior to having the pacemaker put in? As long as he was in sports, he saw himself as being strong, there's no way he could possibly have the same issue as his older brother, an issue that killed him. Now he is faced with being unable to do the sports that makes him feel strong. If he is passing out, botton line, he NEEDS that pacer. When he is awake his heart rates are below 40 beats a minute (which many people have) can you imagine how much slower his heart rates were while he was sleeping? Houston told me that y daughter's awake heart rates were in the 30's range and while she had pre-syncope, she never passed out before her pacer was implanted. They also tod me that rates that low could cause the heart to stop beating altogether. Your son may not realize it, but he is VERY lucky to be alive today. With our society's overboard love affair with sports your son is a classic example of what is becoming so wrong with this picture: sports are more important than life! Take care (on a side note: there is also a parents support group here on MedHelp under the title of Pediatric Cardiology Forum which is NOT the expert forum)
thank you, my sondid get restricted from contact sports which he actually hates for it. He plays 8 sports because plays 2 per season. One for school And another for a club. My son thinks he could still play some sports, but he has to give up lacrosse which kills him. Ive never really liked him doing so much athletics but I just kept my mouth shut to avoid and arguement. My son said "I really dont need the pacemaker dad, I don't need it." That's all he ever says now, with that I don't know what to actually do.
Hello again :)
I, too, am glad tohear your son has been doing better and that he has had a pacer implanted as well as being evaluated by a university hospital. With a pacer, contact sports are usually stopped because the wires can be broken. On a side note: there is a Pediatric Cardiology Support Forum on this site as well for parents. Take care
I, too, am glad tohear your son has been doing better and that he has had a pacer implanted as well as being evaluated by a university hospital. With a pacer, contact sports are usually stopped because the wires can be broken. On a side note: there is a Pediatric Cardiology Support Forum on this site as well for parents. Take care
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