How do I tell ds

[noddyholder]

that my cardiac doctors want to scan his heart and lungs without scaring him?My last heart scan showed that my condition had worsened significantly and looked more like the genetic form of cardiomyopathy rather than what they originally thought was thickening of the heart muscle due to my other health problems.They want to see him asap as he has started secondary school and is playing more sports etc.I haven't told him yet as I don't know what to say and feel that if there is anythin wrong he will blame me as I am the carrier iyswim.Any ideas greatly appreciated xx

[doormat]

"bump"

[PottytheVampireSlayer]

It's a tough one noddy . I think honesty is the best policy, but with the hard edges taken off at least for now.

Hoping that all will be well with the scan. I know of a mum of 3 boys with DCM and can put you in touch if you ever feel the need. Although if you post on any cardiomyopathy message boards you may know her already.

[Heartmum2Jamie]

Noddy,

I would also be inclined to say that honesty is the best policy. I also hope that all goes well with the scan and that it shows nothing out of the ordinary. I also know that mother of 3 boys with DMC, she is a wealth of info and I know that she would be happy to "talk" with you.

Hi Potty

[PottytheVampireSlayer]

Hello Jamiesmum

[bundle]

which hospital are you at noddy? at the middlesex I've met the "play" therapists (though they're not called that!) for the teenage cancer ward, where they're especially skilled at talking things through with young people in an age-appropriate way. maybe your hospital has someone with similar skills who could talk it through with you, sort of rehearse it? x

[QueenVictoria]

He's old enough to be frank with imo.

Hope it turns out ok.

[auntymandy]

Does he know about your condition? If so tell him they want to check he is ok. Children are a lot stronger than we give them credit for

[PottytheVampireSlayer]

Have you seen this noddy?

[macwoozy]

Sorry to hear that your condition has got worse noody, that must have been pretty awful hearing that when you last went for your scan. I think you might be surprised with your son's reaction though, especially when you explain how the tests are totally painless My ds will be tested again for this condition in January, but as he's only 5, I only have to explain it in really simple terms. How much does he already know? He's going to have to learn the basics at least so he can spot any symptoms, if god forbid he ever developed it.

[macwoozy]

Sorry noddy, not noody

[tamum]

I think bundle's suggestion is excellent, the play therapist we met at St Thomas's was fab. I would be inclined to frame it as them wanting to reassure themselves that all is well rather than looking to see if anything is wrong, IYSWIM. I know that might store up problems for the future, but I feel it might be better to be positive to start with, at least. I'm really sorry you've got all this to worry about, noddyholder.

[noddyholder]

potty i have seen it and it is stuff like that which keeps me optimistic.Macwoozy thanks for your post I will go down the checking things are ok route with him rather than looking for a problem to start with He knows all about my health but that is the problem I feel he has seen so much he may be frightened Thanks for all your messages i am keeping everything crossed