Printable View
I think the diagnoses if long QT syndrome is done from more than just one ECG, I would imagine you'd be seen almost immediately at the RCH if he thought it could be. I would have thought a cardiologist would have seen you in emergency at the time. If its only something minor you could be waiting months for an appointment at the RCH, I waited 9 months to get an appt for DD2 for her heart murmur, in that time I sent the referral to MonashHeart and she was seen the same week.
It could be a heart murmur, DD2 was diagnosed with one 18 months ago, she had an ECG once diagnosed
Hi Diane, I work in coronary care and there are many cardiac syndromes that sometimes show up as subtle changes on an ECG. Nothing can be diagnosed from one ECG and if they were concerned they would not have discharged her home. Please try not to worry, I hope it is not too long until you have an appointment. All the best.
We don't have a Pediatric Cardiologist in Geelong but the doctor sent the results to RCH and spoke to the Cardiologist on the phone. A heart murmur was detected when DD was 6wks and I told the doctor that too. Thank you all so so much for your reasurrances, means so much.
Regards,
Dianne
Thinking of you. I understand how hard it is when medical conditions pop up and there is zero information on your family's medical history. I hope you get some answers soon.
Oh Dianne I agree with the above no one knows it's Long QT now or any thing else yet. It's just something that needs to be checked out. The cardiologist would have been able to see the ecg and if they thought your DD was in immediate danger they wouldn't have discharged her.
And I've found heart stuff appears really scary on the internet. If I google almost any of my symptoms I get told that I should rush to emergency and that I could die any minute, but I know that my condition is not at all life threatening.
So I'd try to stay away from google at least until you have some more information. There's so many things it could be at this point. From the information you've given it could even be what I have which is not dangerous at all.
I also wanted to say I know how hard it is being a genetic carrier of problems. I know that my son has at least some of the heart issues that I have and that what I have is genetic. I'm just really hoping he doesn't get it any worse than he already has it, but I know it will just be a waiting game to find out. At least we're prepared and know what the issue is. It must be even harder not knowing yourself. My father went through that a bit since he and a few of his relatives had had undiagnosed but mild heart problems, it only became a bigger issue with me and he knew he was the carrier but not what it was.
I really hope you get some answers soon.
Huge hugs huni. Xxx
Dianne, praying everything turns out OK :hug:
Diane that sounds harrowing. Hoping you get answers and more hope soon.
Rang RCH this morning and was told that DD's referral was rejected as my phone numbers were illegible. She asked me to ring Emergency where DD was seen and have them send another referral. The lady I spoke to in Geelong was lovely, she is going to ring RCH herself and get back to me. I'm going to ask her if there is any information she can give me that's on the referral also.
Regards,
Dianne
That's really not good that it was rejected due to poor handwriting! I really hope you get in asap, because it must be terrible for you waiting....
Praying that it is something minor and she is all good.
How does she feel about it all? I hope she is not stressed.
She doesn't seem to be stressed, she's actually looking forward to the day we go to Melbourne and being back at school has helped take her mind off all this. I've been feeling less worried the last few days, havn't googled anymore and just trying to stay positive.
Regards,
Dianne
There's nothing worse when you're waiting on a phone call and they don't ring back. Rang Geelong again this morning, this time the ward clerk rang RCH and said that they are willing to accept the doctors notes as he wont be in for another two days to write a referral. She told me to ring RCH tomorrow to check on the progress. Fingers crossed this time we get an appointment, it's now a week and they are still mucking around with this referral. So frustrating.
Regards,
Dianne
Not sure what to make of this. Rang RCH today and they have confirmed DD's referral, yay. She said it's been sent to the Cardiology department and normally takes a few weeks for an appointment to be made but said that DD's referral is marked as 'urgent' and if I ring back Tuesday she'll be able to give me a date. I know I shouldn't presume things but this just makes me think her condition is serious.
Regards,
Dianne
Try not to read too much into things at the moment. (Easier said than done) must be very worrisome for you.
:hug:
Maybe that marked it urgent because of her age and because it's already been delayed a week?
:hug:
Possibly also marked urgent due to her being symptomatic, rather than just a heart murmur picked up at a random check up if you know what I mean.
Really hope you get some answers soon. It's a horrible wait and every day feels like a month..