biventricular hypertrophy ???huh???

[sugarbea]

My ds is 6. His grandfather died suddenly at the age of 34 from cardio myopathy, which as far as i know is enlargement of the heart about 16 years ago (he was healthy and asymptomatic). As the disease is genetic my dcs have to be checked every 5 years. His echo was fine but the ecg came back with biventricular hypertrophy (enlargement of both left and right ventricals). He has to have a 24hr ecg and seen at the cardio myopathy clinic at the brompton. When i have typed both things into google the first answer I saw was SUDDEN DEATH. :O I should have learned from dds condiition to stay away from the internet. My dd (15mo) also has heart problems that are unrelated as well as other health conditions so i've learned not to panic at every medical terminology thrown at me, but it's so worrying to know that his grandfather died suddenly with no symptoms. Also that hes been referred from a cardiac clinic to an actual cardiomyopathy clinic.
Anyone know anything about hearts in children or adults.????
Have posted in both childrens and general health.
Thanks
Sugar

There is a cardiomyopathy association, google it and contact them, I'm sure they are a good support of help support and advice. I'm a nurse and have attended study days they have run for health professionals which were very informative. Hope this helps.

I have HOCM which was diagnosed in 2001 when I started having symptoms I have severe thickening of teh left ventricle and some valve problems(mitral).I am on medication for life and although my life has changed to accommodate this I still have a great life and I have a ds etc. No one is sure whether mine is genetic becasue although heart problems run in one side of the family no one died young or anything and so over the years they have just treated me with pills to sloe the heart and take the stress off it. I had renal problems as a teenager which gave me high blood pressure and that can thicken the heart too so they aren't sure. Tbh it is a blessing to know as treated patients have significantly better outcomes as undiagnosed.Any other questions just ask. I haven't had surgery but know several who have inc kids and they are all very well. My ds is 17 and so far clear on echo x

I am far from an expert on this but I would take the ECG result with a pinch of salt until it is confirmed by other tests. ECG results are rarely 100% conclusive from what I understand. I cannot see why the hypertrophy would not be visible on the echo if it existed. I am sure someone far more expert will be along soon!