My dad was diagnosed with this. I have had ultrasounds throughout my whole life. I am 30 and they have never found this condition in me. I have a 2 year old son and 4 month old daughter. Since I have no evidence of this do I need to have my kids evaluated right now or just wait until they play sports. The pediatrician said just to wait until they play sports. But I get real nervous of it. Does anyone have any experience with this?
Hello and welcome to the site! Any experience, you ask?.......Lots of it! It would be helpful to know whether or not anyone else in your father's family had, or has, HCM. Has anyone suffered a sudden death event at a young age as well? You may not show signs of this on an ultrasound at the moment but may as you get older. The vast majority of cases of this disease are genetic in nature and therefore what is in the genes is more important to know. If you have the gene for HCM you may develop the disease 20 years from now. Occasionally HCM can be sporadic, but that is rarer. We are going through this right now in our own family; my youngest daughter had one of the worse cases of HCM that was seen here in the US, we were all tested for the disease when she was diagnosed, none of us had it although her sister was boarderline when she was 16. At 58, my ultrasound showed I had reached the borderline limit for HCM so there is a possibility I may be developing this disease. If there is no family history of sudden death, you are probably safe to wait before testing your children for this disease, but I would say test them before they start school. That is even before they start sports, that way you have some kind of a baseline. Your other option would be to see a pediatric cardiologist and have the children evaluated; for myself, that is what I would do. Pediatricians rarely ever see HCM in children; to say wait until they play sports could be putting your children at risk; HCM can lead to a sudden death event without a child ever picking up a ball, it can happen with them riding a bike if they are prone to arrhythmia problems. SDE are rare, only about 2%. Keep us up on how you are doing. take care
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