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???

[michellepetkus]

I am sorry to hear about all of your sons troubles.  We aren't doctors here so any advice we give is based on personal experience only.  Bradycardia is a slow heart beat.  It is possible the slowness of the beat is making it feel like his heart is skipping or it is possible he is also experiencing some ectopics.  This are errant beats arising from different areas of the heart that disrupt the normal beat cycle.  They aren't dangerous in an otherwise healthy heart.  What sort of condition was your son treated for?  If it is an ongoing condition I would ask the doctor for a holter to get an accurate reading of what his heart is doing to find out if he is even having ectopics or something else and if it is dangerous due to his condition.  What did the doctor say about the bradycardia?    I would say if your son is still collapsing to keep on top of this.  Do you know why he is collapsing?  Can I ask what his bp is?  Low bp can cause people to pass out and sometimes adding a little salt to the diet can help.  Also sometimes adding some caffeine to the diet can help with the bradycardia but considering your son may have some underlying health issues consult the doctor before you do anything.  Take care.  I hope you son feels better soon.  Keep us posted on how he is doing.

[jaymikechar]

my son has been fighting this since he was 5. He is involved in many sports 8 in fact. His bp if i am correct is 145/250.  My son is 173 lbs and stands 6'7. He collapses because he does cross country and my wife and i try to get himout of it. He goes to the dr this week, His bradycardia has gotten better about 10% in the past year. He does well in school and he is talented at many things.

[michellepetkus]

The bp doesn't sound right.  Normal bp is 120/80 the first number generally tending to be bigger so it could be 250/145 but that is extremely high and I would think he would be on bp meds if that was the case so I am thinking that is probably not right either.  Well, cross country doesn't really cause someone to pass out.  He is passing out while doing it which is a sign he has exercise intolerance for some reason.  Has his cardiologist cleared him to exercise?  Well it is good he is going to see the doctor.  Collapsing is something you will want to keep on top of.  Good luck and keep us posted on how he is doing.

[jaymikechar]

Sorry about not posting about my son for awhile, but he`s doing well right now. His bp is normal, and his doctor is limiting him to play only 4 sports which he hates. However, his cardiologist thinks he should have a valve replacement. With 11 other kids, and one who has a minor case of Autism holds us back from helping him. We can't afford it, as a father I'll do what I can for him, before he turns 18 next March. However, my son is average. Eventhough he is ill, he still acts like a maniac like he is. He is my wifes and my living miracle.
Ill tell more info soon,

[michellepetkus]

I am glad to hear he is doing well but please make sure he follows the doctors advice about his exercise limits.  It is better to be safe than sorry.  Wow, 11 kids is a lot to take care of.  I look forward to hearing more from you. Take care.

[jaymikechar]

Jay (my son) is following his exercise limits for now at least. He learned his lesson about a week ago when was running to train for his soccer try outs I was there but I was helping my 12 year old daughter practice tennis then my daughter keep on saying "dad, Jay is yelling for you." I look up and See my son on the ground. It was a major scare, knowing my son has some minor exercise intolereances. As I ran over to him, he was getting more pale by the minute. My daughter was a great help by calling an ambulance to help him, Which was a great help. Since, I could have lost him that night. Until then I don't want him to exercising to much.
My wife and I do have 11 kids but three of them are out of the house raising for there own family

[achillea]

I just noticed that you say your boy is 6' 7" and weighs 173.  That's an extraordinarily tall and slender kid.

Has any doctor suggested that he might have what's called Marfan Syndrome?  It is associated with unusual height and slenderness, and there can be problems with the heart and circulatory system.

[grendslori]

Your child has obviously been deeing a pediatric cardiologist for several years; has he been evaluated by an EP Specialist to really have a good look at his heart's electrical system? What is going on with your son does not sound normal at all. You say he has bradycardia, how slow is his heart rate? (at awake periods and at sleep?) Being an athlete, it would be normal to have a slower heart rate; it's not normal for him to be hitting the floor. Does he need a pacemaker? I would certainly be asking about that along with seeing an EP Specialist. My daughter was diagnosed with Sick Sinus Syndrome when she was 6 years old (along with other heart issues) and at 8 had to have a pacer implanted. Her awake heart rates were in the 30's range and we were told her heart could stop beating with rates that low. The first thing I thought of with your son's physical description was also Marfan's Syndrome; has anyone looked into that?

[grendslori]

Forgot to say: I would pull him from EVERY sport until he has had a REALLY GOOD evaluation; it doesn't sound like that has been done yet. If you can see if you can get him into a good medical facility at a top University Hospital; they see kids like him all the time and their expertise is on a much higher level. They also usually have finacial aid options to help families as well.

[jaymikechar]

No, I haven't had the full time to, since I'm a photographer some nights I spend nights out and Stay home at day while my wife works a day shift at a local hospital. His coach for soccer says he's required to gain 30 pounds by the third game or he cannot play. 
His Cardiologist Now thinks he needs a new heart valve and I have no clue why. My son isn't a huge fan of eating food an at times my wife has to force him to eat. I forgot to mention, back in 1985, My wife and I had twin boys, My wife and I discovered our first son had a hole in his heart. The surgery all went well for him. He was an amazing older brother to our son who has the heart condition now. In 2001, He had a pacemaker implanted due to Bradycardia and he didn't make it through the surgery. 
The thought of it still gives me the chills, I don't want it to happen to my son, Our family would be destroyed again. Making him quit sports to him is making him stop breathing.
This is all confusing to me!

[achillea]

To us also!

You say your son 'often collapses as well as having surgery 4 times to fix his heart condition'.   This is a big deal, but we don't have the reason behind it all.

These surgeries would not have been done if he did not have a diagnosis--a name for his heart condition.  As his parent, you must have signed the consent forms for these surgeries, so someone must have told you what the diagnosis was and explained to you why the surgeries were needed.

Can you tell us that?

[jaymikechar]

this one time he had to have  two procedures done because he couldnt stay stable enough for the surgery the first time
He has had surgery two times for something clogged, I'm not aware because I wasn't there the whole time. The one was for a leaky aortic valve
The last one Was for a blood clot to the heart,
I'm not 100% sure how this leads his issue
Mainly my wife takes him for medical help since she's already a doctor.  

[michellepetkus]

My heart goes out to you.   You have been through a lot with the one son and now a 2nd son with heart problems.  It sounds like maybe something hereditary is going on.  Maybe your wife is trying to protect you being a doctor and all.  I send prayers yours and your son's way that he is able to get his heart into a stable state and lead a long productive life.  Take care and stay strong.

[achillea]

You sound as though you would like to understand what is going on.  Since you wife is a doctor, perhaps she would be willing to sit down with you and explain it all in a way that would make sense.  I'm sure she is in a better position to do that than we are.

I wish we could do more.

[jaymikechar]

Thank you for your prayers my wife had explained everything to me and now I understand everything. We got a university hospital to get him examination  and I'll tell more detail when that happens

[jaymikechar]

my son is doing much better, he's went  for surgery for a pacemaker today and his cardiologist hopes this stops his bradycardia. After that, his cardiologist will see what else Is wrong.

[elko26]

I hope your son gets better. we are here to share our stories and support one another. however, one thing i dont understand is for  someone in his condition, why is he playing eight sports in the first place? research has shown that exercise is good for the heart no matter what the condition is, but one needs to realize when it's too much. he needs to know exactly what's wrong and why he keeps passing out when his heart is under stress, before he keeps on competing. some people with bad heart conditions live long lives because they follow their doctors advices and maintain a healthy lifestyle. i hope your kid would do the same.

[michellepetkus]

I am glad to hear things are going well.  It sounds like things are heading in the right direction.  I do hope that the pacemaker does the trick and keeps your son healthy and strong.  Has the doctor mentioned anything about his sports?  Please do keep me posted on how he is doing.

[grendslori]

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

[jaymikechar]

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.

[grendslori]

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)  

[jaymikechar]

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.

[grendslori]

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!

[jaymikechar]

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

[achillea]

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.

[jaymikechar]

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.

[michellepetkus]

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.  

[jaymikechar]

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

[grendslori]

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

[jaymikechar]

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.

[jaymikechar]

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

[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]

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

[achillea]

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

[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?

[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.

[grendslori]

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.    

[achillea]

"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.

[jaymikechar]

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

[michellepetkus]

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.  

[madamebrianne]

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

[jaymikechar]

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.