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Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.

DS being tested for dilated cardiomyopathy

(10 Posts)
BrandonsMummy Sun 18-Oct-09 17:19:20

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?

ScaryFucker Sun 18-Oct-09 17:29:11

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

jetonthedancefloor Tue 20-Oct-09 08:49:46

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

Wallace Tue 20-Oct-09 20:51:23

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

Wallace Fri 23-Oct-09 21:10:58


BrandonsMummy Fri 23-Oct-09 22:54:03

Thanks for the bumps Wallace

Wallace Sat 24-Oct-09 07:03:57

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 Sat 24-Oct-09 10:10:52

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.

BrandonsMummy Sat 24-Oct-09 15:44:18

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 wink but as one of his father's symptoms is exhaustion it does concern me a little

fizzyanddizzy Sat 24-Oct-09 17:57:28

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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