parents to children with heart isssues..I need your help..

[sugarbea]

3rd post in a different forum, im trying everywhere

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

Hi sugar - as far as I'm aware biventricular hypertrophy is quite difficult to diagnose on ECG. Who did the test and interpreted it, the cardiac clinic? Generally I'm more likely to take note of echo results than ECG as I'd expect hypertrophy to be visible on ECHO. Either way though the Brompton has a fab reputation (you'll probably know this already) and you'll be well looked after. Try not to worry (and do not Google anymore); your son is in a much better position than his grandad because the drugs available these days work wonders they really do.

Take care.

Hi
The Brompton is great - my ds is treated there for cardiomyopathy. Agree with saggar- bit odd that the echo showed nothing but the ECG did. DO NOT GOOGLE -tis v bad indeed! what is most important is that they have picked up any issues. When is his appt at the Brompton? Does he have any symptoms at the moment?
This is all so new so will be shocking and confusing- this will get better-particularly after you have spoken to the Drs at the Brompton who really are experts at this. Let me know if you have any questions you want me to answer.

Thankyou both
It makes no sense to me, i've been trying to get hold of the consultant today to tell me exactly whats been found. I was sent the report to the gp with the letter explaining that they want to see him at the cardiomyopathy clinic.
The one thing I will say was that my ds echo lasted all of 4 minutes. They look at my dds heart for a good half an hour. I wonder if because he is asymptomatic and my oh seems to be ok that they ruled out a full investigation in the first instance.
saggar the test was done in the cardiac clinic and the consultant has reviewed it. I assume ofcourse..lol
I just don't know what to think. I've heard so many horrible stories of INSTANT DEATH... I feel like I don't want to let him out of my sight. Sounds very over dramatic I know but we've spent the last 15 months watching dd come out of op after op and from heart consultants to bowel surgeons to orthapaedic surgeons. I think i'm just going to buy cotton wool in bulk and start wrapping!
I guess i really wanted to know if it can be managed (if thats what it is)
Thanks for sharing

sugar - my dd's heart means she's been at risk of sudden death too so I know it can be a bit daunting. I see on your other thread that Wallace pointed you towards Heartline. I post there - prolifically in the past but less so now. Come over if you feel the need. dd has also had ortho issues too, she's older now; less of a rollercoaster than when they're young. Hope you get the appointment for ds soon and they can put your mind at rest.

Hello again. When wE were first told about ds we were petrified. Didn't help that the dr told us he had a 1 in 5 chance of droppin down dead at any moment. Luckily the brompton soon told us that was complete rubbish. It has taken a long time though to unwrap some of the cotton wool. I can see now that ds was v poorly as a baby and his case was quite severe. We were v lucky. I get reassurance now from the check ups and tests which explain why he's asymptomatic and lessen the worry. I can't say that its not something - don't think about a lot but it is manageable. I think you are right to get some clarity asap so you are not tormenting yourself with the unknown.

I reccommend joining the Heartline forum, there are lots of other heart parents on there! www.heartline.org.uk

An ECG is nowhere near as reliable as an echo. It is highly likely that the Brompton will find nothing to be concerned about. That said, try to stay under their care as this (hopefully nonsense) abnormal ECG may well turn out to be your family's passport to lifelong world-class monitoring and care.

there is an unbelievable threat of closing the Bromptons paediatric heart unit...please sign the petition on their site to save this remarkable facility. My daughter was treated there for over 20 years and they were life givers