DD12 had an abnormal ECG

It's been such a long and scary night. DD12 fainted in the bathroom last night and hit her head on the tub. I was bathing DD6 and heard the sickening thud of her head and then she's on the floor at my feet, out cold. I called her name 3 times with no response then called out to DH who carried her into the lounge and I called for an ambulance. She started to come around and by the time the ambulance arrived she was able to speak and colour was returning to her face. She had a neck brace on and it had to remain for hours until they did an xray of her neck and spine which came back all clear. Then they did an ECG and the doctor said the results were abnormal and started asking me questions about whether anyone has a heart condition in the family or whether anyone has drowned (I still don't understand why he asked this question), there is nothing on DH's side of the family and for myself being adopted I have no idea of what medical conditions run in my biological side. I should have asked more questions but he has sent off a referral for her to see a Pediatric Cardiologist at the Royal Childrens Hospital. I'm just so scared for her and pray that it is nothing too serious.

Regards,
Dianne

Hoping everything is ok x

We have heart conditions in our family, but have only found out since my mum was diagnosed with angina at 47. Suddenly grandma shared that she herself has a heart condition as if it was nothing.

Hope her head isn't too sore today x

There is a genetic heart condition that can make the heart beat too fast that cause fainting. Sometimes it is detected in families after someone has died while swimming. It can be mistaken for seizures. I can give you the name if you want.

The pediatric cardio will be able to do the appropriate testing and answer any questions you have. Getting an accurate diagnosis or finding out everything is fine is really important.

hope her head is ok today.

take care

No advice, just support. That would be extremely scary. Hopefully it's nothing serious & your DD gets the all clear.

Thanks ladies, HotI would be great if you could give me the name of that condition please, the last time she fainted at age 7 she also had a seizure, we were in the GP surgery and she fainted from having a needle but then also had a seizure but my GP told me it's very common to have a seizure after fainting.

Regards,
Dianne

Gosh what a shock! It's good to know you are being referred to the right place straight away so you can get the whole thing sorted as soon as possible. It's good that they are taking such precautions.

Very true Lenny, I was thinking this morning that maybe if an ECG was done when she was younger with her fainting spells she would have already been checked. I'm trying to comfort myself with the thought that if it was majorly serious they would have sent her already to Melbourne.

Regards,
Dianne

How scary for you all. I hope you get some answers huni. Huge hugs xxx

How scary!! Hope everything goes smoothly. Big hugs. :hug:

Hi Dianne,

The condition is called Long QT syndrome. The important thing to remember is that if your DD has this, diagnosis is a good thing because medications are available to manage it. It is a good thing that the dr is getting it checked at.

take care

Hun I hope she is ok and that you see cardiologist ASAP, how scary for all of you. My 1st thought wsa Long QT syndrome.

Take care xoxo

HotI and feeb I googled Long QT Syndrome and it really sounds like this is what it could be, now I understand the drowning question. She slept for 5hrs when we got home and has only complained a couple of times about her head hurting so she's been pretty good. Thanks again ladies.

Regards,
Dianne

Just wanted to drop in and add my support.
I've got a heart condition myself and it was one very very long road to diagnosis, in the end it turned out that it was just a really rare condition and was only described a couple of years before I was finally diagnosed with it.
So here's hoping that your girl gets a quick diagnosis and that it's something they can treat easily.

Been doing some research and I'm worried out of my mind. The doctor in hospital knows it is Long QT Syndrome because it is diagnosed by an ECG, why on earth wouldn't he have told me and why wouldn't they do something straight away, DD shouldn't be waiting here at home. This condition causes sudden death in children and young adults. DS18 has had some fainting spells over the years, I can't believe this is happening. I feel so horrible and guilty because I know it's from my side of the family, I just want to take all my children somewhere right now to also be checked. I feel completely helpless.

Regards,
Dianne

Just hang in there. When is the appt with the cardiologist? Ask about getting all the kids checked as a precaution.

You are a loving and caring mother who is doing her best with what you know. You can't be responsible for something if you didn't know it was a possibility.

Thanks, I have no idea when the appointment will be, I'm going to ring RCH on Monday to chase up the referral and any other information I can find out. If it is this syndrome they will do genetic testing on all the kids, DH and myself. I know logically I'm not responsible but it's just an awful feeling inside of me.

Regards,
Dianne

I'm sorry you are going through this, and so worried. I don't think the dr you saw could definitely say whether it is or is not Long QT, but something he saw on the ECG made him think it was worth looking into. I think there is more testing needed to confirm the syndrome. I know the google searches don't look good, but try not to stress too much until you talk to the drs. We can't do much about genetics, but you got your dd checked out when she needed to, and you are being proactive in getting things looked at. That's the best you can do.

take care

Praying for you Dianne.

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..

we had an urgent referral for our DD3 recently to cardiology (still took a good 2 weeks lol). I think an Urgent Referral is given when a child is presenting with symptoms (ie your daughter collapsing). in our case it was our daughter having unexplained seizures.

just a heads up: cardiology is a seriously busy department. there is a high likelyhood of the wait being longer than you want it to. I would write down any of the worries or concerns that you have now so that you have them on hand to discuss with whoever is going to be seeing her.

I received a call today from RCH and DD's appointment is for this Friday, I'm so happy we'll have some answers soon.

Regards,
Dianne

Glad that the apt is soon

Good luck with it, i hope you get some helpful info when you go. xxx