DS age 6, symptoms. Absolutely terrified in case it's his heart.

[worried872]

I am new to posting here, I don't really know why I'm posting this other than to try and get some other's perspectives / opinions or support.

I have 2 children, DS is 6 nearly 7. The past month maybe 1-4 times a week he has been complaining of a "sore heart" or "thumping then stopping" feeling, which I think is palpitations.
For about a week now he's been saying he is tired quite a lot, which is unusual for him and he has been eating and sleeping well.
I am terrified he could have a heart problem - have been looking things up and now I'm sick with worry about him.
His dad's cousin collapsed suddenly playing football around 30 y.o and was diagnosed with a heart problem (can't find out what as DS dad refusing to talk about it at all), my sister lost a baby at 18 weeks to down's syndrome with heart problem, and my mum was on tablets for years after being diagnosed with a heart murmur when pregnant with me, although was eventually told she didn't need to take them anymore (she is dead 16 years so can't ask).

Googling has terrified me, the family history seems suspicious and the facts about these kind of conditions make for grim reading. I have barely ate or slept in days. I took DS to the GP 2 weeks ago re the palpitations, but he just shrugged "boys his age don't get heart problems" and sent us on our way. He is more tired than usual so I'm worrying even more now. He is due to go for minor surgery under a general for something different (hydrocele) and his dad has made another GP appointment for tues to ask for tests to be done, but is refusing to say any more, keeps hanging up the phone and saying I'm crazy, we both get palpitations ourselves (true) etc.

Should I get a loan and pay for private testing...I'm so worried it's unreal. If DS dad doesn't get anywhere with the GP on Tuesday, I'm going to take him myself and insist on the checks urgently, or pay for testing asap.

I know that it's going to be a wait and there is nothing I can do about that, but I really can't function unless I find out he is ok.

If anyone has any suggestion on how to proceed or medical knowledge or even just can give support I'd be very grateful.

came back up earlier and I hugged him his heart was going really strongly

That's fine.

A new born baby has a heart rate of about 220, it gradually slows down, for an adult normal is 60-100bpm AT REST, as soon as you exercise, and that means standing up from siting the HR will increase.

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It's never been a normal family dynamic to be fair, due to many reasons and responsibilities, but that's a whole other story.

I really hope everything turns out OK for your DS x

DS heart rate was 89, which I read is normal for his age. I did mines as well and it was 69.

The app is called instant heartrate app & it logs them so you can show the gp if it is high. Lots of things can cause the heart to act this way- it is not normal in a child & needs investigating even if it is nothing. Low blood sugar, thyroid, low iron & low vit D are all factors mentioned during our investigations. I hope your GP is good next time you go and remember if you are worried you can go to A&E.

Just to add to the list of other things that can cause irregularities. I was working in a cardiology department (I was a clinical physiologist) when I got SVT a couple of times so I was able to do a rhythm strip - short version of the ECG - only looks at single channel - I know lots of courses, I know lots of treatments, I had access to a number of cardiologists one of whom watched me take the rhythm strip.

It was my thyroid. I had an under active thyroid, which normally means your heart slows down, but mine didn't. My GP was right, not me and not the cardiologists. Even now if my dose needs to be increased I get SVT.

That's really interesting sassh, my DS has thyroid problems!

Op, is it your DS's appt today? Hope it goes well.

He had his appointment with the GP this morning. Actually this morning he was eating Rice Krispies and started holding his chest saying ouch and then said it's the worst one that's happened as he was getting dressed, so that was pretty worrying.

The GP listened with a stethoscope to his heart and chest, examined him ears eyes etc, asked him to describe what happens when the heart gets sore. But the result of the consultation is that he is fine just keep an eye on him and no testing.

I am not reassured really, still really worried. I made sure the GP was told about him being more tired than is normal for him as well.

Not sure what to do now really.

One thing though is that I managed to get hold of MIL who told me that the cousin of DS dad who collapsed and has the genetic problem - when this happened MIL said that all his immediate family was tested and it did come back that it was coming from the mother's side as the cousin's mother turned out to have it but not the father (DS dad and DS are related on the father's side). Does anyone know if this means for sure that there is no family history relevant to DS?

Not sure what to do now. DS dad is against paying for private testing I think (even me paying for it). But I'm not sure I am happy that a GP can just look at him basically and say it's fine without doing any checks. Surely palpitations in a 6 year old need investigation even if, as is what I'm hoping, most of the time they don't mean anything. I mean I get palpitations multiple times a day for nearly ten years, sometimes don't get them for say a week, sometimes every few hours (!) and I'm fine and I don't worry or even barely notice them anymore, but when it's your child...

Does anyone know if this means for sure that there is no family history relevant to DS?

Yes it does mean that for sure.

What the GP has done is a general medical check - that is exactly what a cardiologist would do.

Surely palpitations in a 6 year old need investigation

Not really, palpitations just mean you can feel your heart beating. Some people are more aware than others. Think of it this way 'surely a 6 year old whose heart is beating needs investigation' - see it doesn't make sense.

I know you are worried but really your GP is doing everything a GP should do.

Fizzy

Oh I have asthma as well. My only symptom is a morning cough.

if hes having chest pain worse when eating/after eating do you think it could be heart burn / indigestion?
the symptoms sometimes feel like its coming from the heart -( heartburn )

I realise this is an old thread but felt compelled to say that there is a lot of misinformation regarding cardiomyopathy on here, and that children CAN 'suddenly' develop it, although very rare. I found this thread as my DS developed dilated cardiomyopathy at 18m old following a virus (in September 2016). I would hate someone else looking for advice on cardiomyopathy to also find it and be misinformed.

Apologies if this has been suggested already as have not read the whole thread but the symptoms he is experiencing are all suggestive of anemia? Palpitations, pale and lethargic are all common symptoms of anemia.