Children with cardiomyopathy?

[tulip27]

We have been told that our 2 year old daughter looks like she has cardiomyopathy. I've checked the internet and the prognosis looks bleak.
Can anyone tell me anything they can about it? I don't know how to cope.

tulip - I'm sorry to hear your news. Do you know which type of cardiomyopathy? My dd had DCM as a result of a significant congenital heart defect. Thanks to some very good drugs she is free of it for the time being. I am also in touch with a mum with 3 children with DCM. She has a couple without too

If you post on the Heartline message board I'll make sure she sees your post and pops along to chat. She is obviously very experienced.

tulip I'm sorry you have had such frightening news. Agree with saggars that the heartline group are awesome.
we went through some hairy times with dd after she was born and heartline were a lifeline.
good luck xxxx

Thankyou, I have just registered there under tulip27 so she will know it is me.
They think its dilated cardiomyopathy.She ic had an echo and ecg on Monday which suggests this and we are going to see a peadiatric cardiologist tomorrow am as a result of the echo.
My father just told me that he was aware but failed to ever tell me that his mother and grandmother both died of a heriditry condition of the heart where the lungs fill with water, guessing this to also be cardiomyopathy so I am sure the diagnosis 2mo will confirm the echo findings.
My husband is now convinced that our 2 yr old daughter will die as a child( he's a doctor)and I'm just scared as I used to be a cardiac nurse(mostly heart attacks, abnormal heart rhythms) and end stage heart failure as a result of cardiomyopathy.
I don't know what to expect with a childhod diagnois.
Help.

I've messaged the mum on Heartline so hopefully she'll keep an eye out for you.

An early diagnosis really is a good thing tulip. There are some fabulous drugs that can keep the symptoms in check for many, many years. Even in the few years since I've had dd there have been huge advancements. Googling is sometimes the worst thing you can do.

Which hospital are going to be looking after dd?

Southampton is our hospital thank goodness. Thankyou for your support. How old is your dd now?

Southampton is awesome.
which consultant do you see? We had tony salmon. The facilities and staff are wonderful. They really helped us with dd.
you and your daughter are in professional caring knowledgeable hands.

tulip I have recently stopped working in the speciality and can I just echo what sagger says the drugs are much better these days we keep a very close eye on the children in terms of their cardiac function and it is not all bad news
I know this must be very shocking for you
my advice would be to get in touch with heartline and talk to some other parents
best wishes to you and your family

How did you get on today tulip?

Everyone I know who is looked after by Southampton raves about the care. You are in good hands.

dd is 14 now, she's doing really well

I have cardiomyopathy but am, obviously not a child and have had it all my life according to the doctors.i only became symptomatic in 2000 and for the last years have been on anti arrythmia drugs which keep it under control.Does she have any syptoms?

Tulip, I do hope you find great support from Heartline, it must be a really scary time for you right now.

I too have cadiomyopathy(a different type though) and have an ICD which gives me great comfort, my ds has regular check-ups at GOS though he's currently not showing any signs.

I hope the consultant was able to relieve some of your fears yesterday.