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Original poster

DS being tested for dilated cardiomyopathy

9 replies

BrandonsMummy · 18/10/2009 17:19

4 month old DS is being tested for dilated cardiomyopathy and left ventricular non compaction next moth as his father has these conditions and there is a 50% chance that they will be passed on to DS. I am not in a relationship with DS's father and only know what I have researched myself about the contidions. Everytime I go to a cardiomyopathy web site I see something that upsets me eg prognosis. Are there any mumsnetters who have experience of these conditions who can offer me any advice?

OP posts:
ScaryFucker · 18/10/2009 17:29

I have no experience, but just wanted to send good wishes

jetonthedancefloor · 20/10/2009 08:49

like scary - no experience, but sending best wishes, must be a very scary time for you all

Wallace · 20/10/2009 20:51

Bumping for you as I know there are mumsnetters who have experience

Wallace · 23/10/2009 21:10

bump

Original poster
BrandonsMummy · 23/10/2009 22:54

Thanks for the bumps Wallace

OP posts:
Wallace · 24/10/2009 07:03

I know how worried you must be as my dd has had heart surgery.

Have you seen this thread about Sallystrawberry's dd? Maybe you could CAT her

fizzyanddizzy · 24/10/2009 10:10

Hello
My son was diagnosed with hypertrophic cardiomyopathy at 2 months so sort of understand where you are coming from.

Has your ds had any tests yet? does he seem well otherwise?

I have learnt the hard way not to read anything about my sons condition. You can only go with each day at a time because if you start thinking about 'what ifs' in the future its just too hard.

It must be scary for you at the moment so you need to think about the positives.

Original poster
BrandonsMummy · 24/10/2009 15:44

No tests as yet aside from an ECG when he was born which was normal. Our first appointment with the paediatric cardiologist is in November. As far as I'm aware the chances of DS inheriting the condition from his father are 50/50 so I'm trying not to worry until I know. DS extremly healthy/happy baby otherwise

The only thing that worries me slightly is that DS can sleep for AGES if I let him. (but is very alert and active when awake and stimulated) I know this is true of many babies and that I should be counting my blessings that he's not keeping me up all night but as one of his father's symptoms is exhaustion it does concern me a little

OP posts:
fizzyanddizzy · 24/10/2009 17:57

All my babies have been ace sleepers! and theres nothing wrong with most of their hearts! By the sounds of it - he sounds like any other 4 month old! and if he is feeding ok - the even better!

I know its hard, but just try and enjoy each day with him - he will never be this little and quiet again !!! and good luck for November!

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