So today, i went to my GP to ask him to refer my girls to cardio for scans and he told me there was no point!!

[misdee]

as apparently DCM doesnt present itself until adolensance, and 'what would they be looking for at this stage?'

errrrr left ventricle enlargment out side of normal rnage, any other signs at all. children get DCM as well you know. he thought dh had HCM as well!!! HCM is mroe comman and does run in families more than DCM!!!

i am seriously losing faith in the GP surgery. i know they have me down as an over anxious mother, and tbh i feel like changing surgeruies as they are beginning to f*ck me right off lately!

[Jimjams2]

Change!

A good GP is so important.

[edam]

Grrrrrrr. So, did he do the referral, or not?

[misdee]

yes. because i wouldnt leave until he had.

he said paediatrics may refuse to see them though.

[Squarer]

Change Misdee. DP was admitted to hospital with pneumonia as a baby. Turned out to be coarctation of the aorta and a whole load of other "shit" too.
On the basis of this DS was given an amazingly rigourous 20 week scan and then an absolute newborn prod and poke.
You need to be taken seriously or treated with more respect at the very least.

[misdee]

this is the thing. the consultant when i was pregnant with dd3 was on the ball enough to get fetal cardiac scans arrnaged just in case, so why the hell cant my kids get a scan every 2 years and an ECG. surely early detection is better than them winding up in heart failure if they do have DCM. properly managed and with the new drugs currently being used stats are better than when peter was dx. (not saying my kids do have it, but if they do, and its a very small IF)

[Chandra]

I wish I could tell you something more positive but the problem is that when they refer as non-urgent, more urgent cases keep taking the places at the front of the queu. I guess that's why so many do not bother...

Are they presenting any of the symptoms Misdee? Please tell me they aren't

[ComeOVeneer]

My thoughts exactly misdee, surely in the long run that is cheaper for them than the cost of the treatment Peter is receiving (although I'm sure none of them will end up at that position).

[misdee]

i iwsh i could say they weremt showing any signs at all. but they do have one or 2 worryig signs. dd1 is a very ill little girl, but i think thats mainly to do with her eczema/asthma/allergies but she is pale, and listless a lot, she reminds me so much of Peter in lots of way. dd2 already has a heart murmur, so just to get that checked as its still being picked up by the GP would be good. dd3 is a very sweaty (and i mean very very sweaty) little dinky dot, Peter was before his surgery pouring with sweat, always had been, now he rarely sweats. his asthma has also gone.

peters machine cost a firtune, a lot more than a £100 echo.

[Heartmum2Jamie]

I would change surgeries Misdee, you need to have a gp you can put your trust in and believe in. I am sure that they don't have it, but yuo need to put your mind at rest. I hope you don't have to wait too long to hear from the paeds.

[misdee]

i absolutly loved the GP surgery there before, there was a very enthusatic GP there who would bend over backwards ti help us. he was always the one who came out to peter and he knew what he was ralking about. now i have lost faith.

[swedishmum]

You don't need the additional stress of worrying. Change GPs and complain - if you have the time or energy. On a much smaller scale I had this fight to get a scan for baby 4 after one of my babies died from a heart defect. They should be much nicer to you.

[saggarmakersbottomknocker]

Misdee - that's crap isn't it? He's right that it does often present in adolescence - but when it's too sodding late to do anything constructive!

Hope the paed sees sense and refers you on to cardio. Don't let them fob you off hun.