i am not allowed to talk about this tomorrow, so give me a kci k up the backside to get my kids referred for heart scans

[misdee]

go on.

even MIL is saying to get the kids screened now.

dd1 health is worrying her. and me. but i am scared.

go on, make me do it.

1st day of the school hols i need to be at the GP's surgery for referrals.

Message withdrawn

I had to have my ds tested a\nd i put it off til he was 11I found symptoms of cardiomyopathy in every thing he did and then thankfully I was proved wrong!The relief is huge tbh and I wish I had done it sooner He has to go back at 16 though so it is ongoing but for now the doctors are sure he is ok.Please do itsoon xx

if there's a test then get it done. no point worrying for years if you can know for definite that they're ok

get them tested, you need to know either way.

Misdee, do you think this is the right thing to do, in terms of giving your children crucial, life-changing information, good or bad? Or do you think you could live with not knowing, when the option to find out is there - wouldn't it gnaw away at you?

Anyone would be scared. But you know, really, what's the right thing for your kids.

i know edam. and its goign to bug me till i do get it sorted out. but i need to get over the fear of finding out either way.

I'm so sorry that you have to worry about your children as well, really feel for you. Has someone mentioned that Peter's DCM could be the hereditary type, I can well understand your worries and however difficult it is you know you've got to get them tested, if god forbid it's bad news then they can be treated early, and if it's good then just for your own sanity to give you peace of mind. I really pray that all is good, I remember how I felt with ds's last test, and Noddy's not so long ago and we all naturally get ourselves into such a state, but it's got to be for the best that we know either way, if the news is bad then there is so much that can be done. Why are you not able to speak about it tomorrow?

Honestly misdee it is better to know I know I was awful and didn't take him I was so scared but every time he was tired or ill in anywat like any normal child I assumed it was his heart and I looked for signs and was quite obsessed with it.They seem to accept the testing easier the younger they are and the technicians said with young kids they can make it fun to test but the older they get they become suspicious and I had to tell my ds the truth before the test which was awful I hope you get some support through this My doctors were brilliant xxx

i have banned myself from talking about transplant etc tomrrow. its going to be a nomal as can be day for us. National Transplant Week has left me an emotioanl wreak tbh.

there is a question mark over peters initial dx of viral DCM, and its recommended that family memebres are screened even if it viral now.

Will you have to wait long for the tests MIsdee? As a worrying parent it's so hard not to pick up on every sign that indicates that your child might have the heart problem. Even though ds was only tested clear 6 months ago, and doesn't need testing for a further 18 months I still pick up on very sign and make a big effort not to convince myself that he's got it, and that the docs got it wrong, I vowed to myself that I wouldn't worry again for the time being, lasted all of 6 months.

You had a whopping big kick up the arse Sallystrawberry Is your ds's referral likely to be soon?

have booked appointments for dd1,2+3 later this week.

Well done - I think knowing must be better than not knowing? I've got an Echo booked myself in about 3 weeks time after having a few dodgy ECGs and the waiting is really frustrating - I'd rather know if there's a problem and get on with dealing with it. Tons of good luck with your dds' scans.xxx

Well done misdee I will keep evrything crossed for you xxxDo you have someone to go with you?At my ds's scans they gave us the result straightaway so it might be nice to have company.

this is just GP referral appointment. will definatly take someone with me for teh scans. am off to find some info to print out.

Glad I caught you before 'normal Wednesday' misdee. Haven't been around much but just wanted to say , good luck, you know you have to do this. You have to. Better to know now with all that can be done to keep things stable.

Will be thinking of you.

Are you going today misdee?