Worried about children

[ricknewyork]

My brother, age 30, recently passed away (2006) with hypertrophic cardiomyopathy and congestive heart failure. He was diagnosed with dilated cardiomyopathy, severe left ventricular systolic dysfunction, hyperthyroidism back in 1998. He also had a past history of infectious mononeucleosis in 1996. I went in for an echocardiagram a month ago (I am 41) and tested negative. I do not have cardiomyopathy. My twin brother (fraternal) also went in for an echocardiogram and he also tested negative. My mother and her family has a history of high blood pressure, but otherwise fine. My father is fine also (but they did not have echo).

I am worried about my children (two boys age 4 and 5). They are very active and the pediatrician said they are healthy. The younger one was born with a calcium deposit in his heart, so we have him checked with amniocentesis and he did not have down syndrome.

Should my children be tested? What are their chances of getting cardiomyopathy? I am worried to death.

[ricknewyork]

I am sorry your middle son has HOCM. What happens when a child develop HOCM? Does this mean a short life? How long can a child live with HOCM? I hope for a long, long time.

Several years ago, I had a 2 hour long EKG done on me and an x-ray as well. I did not have any heart disease at that time. Recently I had an echo and I did not have cardiomyopathy as well. I am worried about my children.

[sugarcane]

Hi Rick,
Sorry to hear about your brother's passing. I have hypertrophic cardiomyopathy, and what I am going to tell you is only from a patient's perspective. I am not a physician, but have lived with the disease and have children that I also worry about. I was diagnosed when my children were 6, 8, and 10. My pediatrician did not see any reason to screen them at the time. (They were not symptomatic.)I changed pediatricians for an unrelated reason and my new pediatrician did think they should be screened. The first screenings were done when they were 8, 10, and 12. My middle son began having symptoms (chest pain with exertion) when he was 12 and was found to have HOCM. So far the others have screened clear. I believe that the current guidelines call for baseline echo at about age 6-10, then subsequent echos every 1-2 years through the teen years, then every 3 years or so for life. HOCM can develop at any time in your life although it is RARE for a child to be diagnosed before puberty. I was not diagnosed until I was in my early 40's. If it would ease your mind, have your pediatrician recommend an echo for your boys.
Regarding your brother's way of dealing with his disease: it is impossible to know if the way he lived his life contributed to his death. There are too many variables. In general, strenuous exercise and competitive sports are not recommended. Meds can certainly help reduce symptoms. Again, I am sorry that you lost your brother. I know that you must miss him terribly.

[ricknewyork]

Thank you doctor and everyone for your input. Just wondering, my mother had a daughter but she died of a respiratory complication. Does this have anything to do with cardiomyopathy? My parents are in their late 60's right now. My mother has a history of high blood pressure which she is able to control through dieting and light exercise. Her father may had died from high blood pressure. Her brother and his children are fine. My father is fine, except he gets migraine headaches.

My brother who passed away was born with a hormonal imbalance which slowed his growth. He was obese his entire life. Back in 1998 he was diagnosed with diated cardiomyopathy, hyperthyroidism, leg edema, perdicardial effusion, aortic valve insufficiency and congestive heart failure. His doctor suggested a valve replacement for his leaky valve. However, he never had it done. Also, he went off his prescribed medication for his heart and his thyroid problem after a short while. He began taking herbal medication. After a year or so, he decided to go back to work full time and against the advice of doctors, went on strenuous excercising.

He died of congestive heart failure secondary to hypertrophic cardiomyopathy (according to the autopsy). I missed him a great deal and what bothers me is that he did all that to improve his condition and he really thought it was helping him. But it only cut his life short. Would he had lived longer if he didn't do all of these things?

I had myself checked with echo. so did my twin brother. We do not have cardiomyopathy. Should my children (age 4 & 5) be tested?

I am sorry for reiterating the information. I just want to see if these addditional information would change any minds? I am still very worried. I made an appointment for my children but it is in June. One month is a very, very long wait...

[dodgybeats]

So sorry to read your post as I understand completely the fear you have. My brother died of idiopathic dilated cardiomyopathy when he was 17 - no one else in my family has this. Apart from some PVCs my heart is normal according to multiple cardiologists and echo reports, however my daughter was diagnosed with a harsh heart murmer at 9 months and I almost had a nervous breakdown. Thankfully her echo was normal and the murmer found to be innocent. The paediatric cardiologist informed me that the chances of her inheriting my brothers conditions are very small, and it is likely that his disease was initiated by a virus. This is reassuring but the worry is always still there of course. I will be asking for regular echos for myself and my daughter and i believe you should do the same if nothing else but for your peace. I am so very sorry you lost your brother.

[cristabelle]

Hello,
It's quite awesome that you are such a good father to be thinking of your children in this way. Hats off to you! (When I post it's usually "about me".)

We have 3 children (7, 12, and 20) and I was born with a congentital heart defect.  I have had the same concerns/questions about my children.  They have all been checked out, no murmurs like mine.  They all have "structurally normal hearts" according to reports.  My son plays excellent basketball, my daughters are team gymnasts.  Just wanted to send some encouragement, hopefully your sons will continue to be strong healthy young men, and beat any odds.

cristabelle

[LukeL]

From what I know hypertrophic cardiomyoapthy is passed on in a dominant fashion, which means a child can only get it if a parent has it. Also some people have idiopathic cardiomyopathy where there is no genetic evidence of the trait in family history. If you are worried about your children you may want to have echocardiograms done on them on a regular basis until your doctor feels they are no longer needed.

Of course I am not a doctor and you should wait for his response, but I would try not to worry so much.

[CCF-M.D.-MJM]

Hi Rick,

It is always good to be careful, but from what you are describing it sounds like the risk is low.  We don't have a clear understanding of what causes most dilated cardiomyopathies.  Certainly there are familial cardiomyopathies, but having a single family member with a cardiomyopathy is not that concerning.  If he had hypertrophic cardiomyopathy, it is reasonable to have a screening echo, especially if it will make you feel better that the are ok.  If they aren't having any symptoms and don't have the distictive murmur on exam, the chances of them developing a cardiomyopathy is low.

I hope this answers your questions.  Thanks for posting.