Dilated Cardiomyopathy in Children

[constantlywrong]

Anyone have any experience of this?

Sadly, my 16 mo has recently been diagnosed with it. The internet is a big scary place atm and every time I venture out on it to find out more info it just terrifies the hell out of me - are there any mners with more constructive advice/support?

TIA

Hello constantly. My dd has DCM which we're now on top of due to surgery for the original defect that caused it and regular meds.

Does your child have a genetic version or has it been caused by a virus?

It's good that you've found out about it now - that really is a positive so hold on to that. The drugs and monitoring are so much better these days so don't be too fazed by what youreadon the internet. Which hospital are you under?

I post on the message board at Heartline or if you don't want to join a forum I can probably put you in touch with a mum who has 3 boys all with the condition in varying degrees. Let me know

So glad to hear your DD is doing well, it's always good to hear positive stories!

We don't know yet. His genetic tests haven't come back yet. No family history though, they're more of the opinion that it was a virus, but explained that we may never know.

Sadly, though we found out about it now, it had progressed to actual heart failure, affecting his other organs, everything was shutting down. We're under Manchester Children's - it's not our most local one but it's not too far away, and I'm finding out more about how good it is for this type of thing, so I guess we're lucky in that regard. He does seem to be responding quite well to the medication atm (he's on enalipril, l carnatine and furosemide, and he's starting beta blockers in the morning), which is great news, it's just all so terrifying.

It's horrible enough having one child with it - I don't know how anyone could get through having three with it, how awful :( That would be nice, if you wouldn't mind

Thanks very much for your response - this whole thing is very daunting right now

you need misdee, will send her over asap

Hi.

My dh had dilatedd cardiomyopathy, and when it was found in a+e after being ill for ages we were told to expect the worst. 2 weeks later he came home. He was on medication and stable for years which was great.

He did go downhill in 2005 and spent over 2yrs in harefield hospital and at home on an artificial heart. He had a heart transplant in 2007. He is doing great.

Heartline is a fab forum for support (our 11yr old has a minor heart defect as well).

DCM can be scary but most people are in control and well with all the new meds available. Most internet sites abour dcm are outdated.

As an aside dh also suffered multiple organ failure a few times but once his heart was sorted the other organans recovered.

constantly - dd was in end stage heart failure and multiple organ failure when she was diagnosed. Her ejection fraction - (you'll come to learn the terms ) was less than 9% and she was too sick for transplant. They pulled her back. Take heart.

I'll mail my friemd and she'll either post here or I'll pm you.