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.

Ah, I am glad you are all doing well and thanks for explaining.

Do you know if I can get an ecg and echo test done privately without paying a consultant fee first? ie just with a referral from GP.. because I can just about afford the test from what I can tell, but would struggle with getting the consultant fee before a couple of weeks.

Cardiomyopathy absolutely does affect children, that is not true at all.

It's probably nothing. But you see every single doctor you have to see until one checks it out. You don't mess around with heart symptoms in kids (I know you're not!). You keep on until they listen.

As an educated guess your mum's problem and your sister's baby's problem are likely to be red herrings here. I'm guessing if your mum had no probs til she was pregnant, had a heart murmur when pregnant and then was fine with no treatment later, the murmur was more likely to be a noise from fast blood flow rather than an actual issue with the heart.
Babies with Downs syndrome frequently have structural heart problems - this means the heart wasn't built properly and sadly sometimes these problems can be so bad the baby is unable to survive. If your son had a significant problem with how his heart is built he would have had symptoms before now (you can have minor structural problems that are picked up when you're older but they're generally not things that will cause a big problem)

The only thing in your family history that stands out to me is the cousin who collapsed when playing football - this may have been a problem with the heart's electricity, which makes it beat at the right rate and rhythm (or might not, we don't know enough about what they found out)

The most likely thing with your lad is that this is absolutely nothing to worry about - sometimes people get funny little 'extra' heart beats which are not problematic but can feel a bit odd. And sometimes just being a bit stressed can make you aware of your heartbeat and it's nothing more than that. However, sometimes kids can have problems with the heart's electricity leading to funny rhythms that come and go (and sometimes these things can be spotted on an ECG even when the symptom of funny heart beats isn't there). Also sometimes kids can be anaemic (for many many reasons) and that can make the heart beat fast, make you aware of the heart beat and make you pale and tired.

So it is worth getting those things checked out - for a doctor to examine him and make sure he's not anaemic and for him to have an ECG (and for it to be looked at by a children's doctor as interpreting children's ECGs is a little different from adult ones)

PrincessHairyMary

I do have a severe history of extreme anxiety, being terrified of bad things happening, depression and PTSD, I've lived with it a long time though as it stems from witnessing the murder of my mother and experiencing homelessness many years ago, and so I know you may not agree, but I know myself and know I can always be rational enough to separate facts. I noticed the palpitations and didn't immediately worry, but then the tiredness started me worrying and then looking things up (AFTER not before I'd noticed the palps and the tiredness), and I've been in a complete panic since recalling about DP's cousin's possible genetic heart problem and his collapse during football. It was only then I started looking things up, but I agree, Dr Google is not the best and isn't specific.

I am ill with worry, but I know it's not good for the DC to sense anything and I need to look after them, so just ate something. P is a whole other kettle of fish, I don't find him supportive, although I know he will be worrying but just sticking his head in the sand most likely.

I think I'm going to speak with MIL tomorrow so I can let the GP know more about the family history. Just hoping and praying for DS it's not serious.

I wouldn't go private just for investigations - there is absolutely no point just getting an ECG unless you have the right person to look at it and they know what they're looking for (and an echo may well not be necessary here). Go back to the GP who can organise an ECG to be read by the appropriate people. Another thing that's worth doing is asking him to tap out the rhythm his heart is beating when he feels it going a bit odd - is it fast and regular or is it irregular or is it normal speed and regular? Knowing that will help the doctors work out what's going on.

Worried you didn't need to explain yourself. I hope you get good news when DS sees the GP.

sallysparrow157, Thank you for your reply. I think I am actually most worried about the thing with the cousin, because I'm sure it was said at the time that his sons etc had to get tested afterwards, and when I looked it up - collapse in 30's, whilst playing football and family being tested afterwards - it strongly indicated the Cardiomyopathy, and with there being such a genetic link and my son having the palpitations and also feeling tired, asking to be carried on the walk home etc, all joined together it's absolutely terrifying me for DS. I can't even describe how much this is worrying me )-:

I will need to ask MIL to find out what the cousin had/has, and I will get DS to the doctor and insist on testing, even if I need to pay. I'll post back on here what DP's cousin had/has if I can find out.

There is a genetic link with SOME of these cardiomyopathy/arrhythmia things but not all and also your lad isn't a first degree relative (ie not a child, parent or sibling of the cousin) so is far less likely to share any significant genes. These things are also very very rare so it is really unlikely that your son has any of the sudden cardiac collapse type problems. Finding out what your cousin was diagnosed with is definitely a very sensible plan though - that is info you can then take to the GP when you go and see them

Thanks sallysparrow, I'll take that on board, you are right. My thinking re the private testing was just really that I could get him tested much quicker than on the NHS (my sister's nurse friend said 4-12 weeks wait for tests). Don't know how we will all cope with the wait, I'm beside myself with fear.

I will do that re the asking him to tap it out. I've asked him where abouts and he points to the heart at the time. When GP asked him to describe it he said "thudding" or "sore heart" or "feels like it's going really fast" or "like it's stopped then goes again", one time he said it was sore going down his arm. Last week he had a definite swollen tummy area sort of at the top of the tummy and saying it was sore there, but didn't say much from the next day and I didn't notice it yesterday. I've not made an issue out of any of it in front of him, although I have been asking did you get any more of those heart things today every day or so. Not mentioning the tiredness to him myself, but he has been saying it, yesterday twice. Inside I'm absolutely terrified.

This has happened to my DD OP who was then 6, for the record there is family history of sudden death from heart failure/disease at young ages too. We were walking through town one day when she complained of a sore heart, literally a sore heart so I shit myself, took her to the docs, they were very good and patient and told me that young children don't present these heart problems related to family history so Young so after an hour wait with new born baby, packed out doctors surgery, hot summers day, drama city, what did she do....burped and it all went away!!! I could have died. She had wind, she panicked herself, I panicked and it all escalated from there. Hope it all goes well for you, things like this with kids are super scary.

Hopefully, this will ease your mind....I had exactly those symptoms, OP, as a child and still get them as an adult. To cut a long story short, they are caused by indigestion (have Crohn's disease) and acid reflux. However, when I was a child/teenager, I would panic about them and make myself hyperventilate, which makes it all seem much worse than it is.

Take your boy to the doctor, though. Your husband doesn't get to tell you that you can't.

Thank you for that info x

I found really conflicting statistics about how rare it is in children. Some sites seemed to quote a few in 100,000 children, whilst others quoted 1 in 100 people etc, or 0.2-0.5%. I guess maybe the different stats are taking into account different things, like I think the 1 in 100 was for total cases of congenital(?) heart disease, not just one or even a few types.

I'd still be very concerned without google, especially with the tiredness which is so unlike him, and the fam history, but the compulsion to google things definitely doesn't help.

It won't necessarily be that long for tests - often there will be a rapid access clinic where you can be seen sooner. If you get referred to a clinic appt you will likely be able to get at least an ECG done and looked at there and then. Your GP may even be able to do an ECG for him and get it sent over for paeds to look at (my other half had an ECG at his GP surgery - they somehow played a tape of it down the phone to someone who can read them, it printed out at their end and they gave a report within minutes - I was well impressed! You never know, your GP may have something similar!)

When is he having the operation?
I think that the anaesthetist could be concerned re. these symptoms and may organise further tests before they're happy for him to have a general anaesthetic.
I would think they would at least listen to his chest (check for any murmurs) and also do an ECG.
Is he due to have a pre- op assessment?
The other thing - could he be feeling anxious re the operation?

Thanks sallysparrow, I hope he can be seen quickly. When I had the 48 hour monitor box thingy years ago because I get palpitations, I'm sure the GP surgery sort of ordered it in and then sent the tape away and I had a follow up at a hospital clinic.

The operation is for hydrocele (which I've taken him to out of hours and been sent to a and e for 3 times since he was 2) and the appointment with the surgeon was supposed to be last week, but DS dad wasn't happy about him going under general so young and wasn't happy about the operation, I didn't agree, but his dad had the appointment moved forward so it's now early September to see the surgeon. Wish i had insisted that we went to the original appointment and then we could have asked for tests. I took him to the GP about a week after the palpitations started, but before any tiredness or remembering of family stuff, about 2/3 weeks ago. Made another appointment for Tuesday am last week after noticing the tiredness for a few days, and his dad is to be taking him since i took him last time and this one is his dad's doc. If his dad stops me coming in to the room with the GP I'll have to make another appointment as soon as, which really is such a waste of GP time because if his dad would just co-operate..

I don't think he is anxious about the operation, he seems more anxious about doctors and people seeing his parts.

I'm actually far less worried about your lads heart than I am about his dad's controlling attitude to his healthcare. The fact that he feels he can 'not allow' you to be involved in decisions and consultations and not communicate with you about these things is potentially detrimental to your son's health if it leads to you not knowing what doctors have said to him.

I remember years ago I saw a family in hospital. Mum and dad had brought the child in to be assessed. Mum spoke no English. Dad got annoyed about waiting and angry with mum and when I saw the child he refused to tell me anything the mum had said, said there was nothing wrong with the child and left. It was as if he was using the child's health to punish the mum. Some of the things you're saying are reminding me a lot about that consultation and how uncomfortable it made me feel

sallysparrow157, thank you, is there any way I can contact you not publicly / on this thread? Just briefly, regarding what you said above, for some advice. Not sure about PMs on this website or anything if it has that function .

Does he look puffy at all?

Calm down.

Intercostal muscles are between your ribs.

6 yea olds do not develop heart disease. 6 year olds with heart problems have had them since birth (congenital). Your relative with the down syndrome baby - congenital heart disease is part of down syndrome, not all people with downs have a heart condition but many many do.

Have you taken his pulse at all? In a 6 year old it will be fast and may well be irregular but you can tell if it is different when he says his heart hurts.

OK what has he been eating? Even professionals find it difficult to differentiate between indigestion and pain from the heart - this is why they do an ECG if you go to hospital with chest pain. It is far far more likely your child has indigestion than anything to do with his heart. And the symptom of a swollen belly would also link with that.

Your GP should be able to do an ECG but please don't become fixated on ECG and echo - chest pains can be an awful lot of things, if you start going down the paying for tests route what are you going to do if the tests are normal?

it strongly indicated the Cardiomyopathy, and with there being such a genetic link and my son having the palpitations and also feeling tired, asking to be carried on the walk home etc, all joined together

OK a cardiomyopathy is an enlarged heart, it is obstructive cardiomyopathy that can cause sudden death in young adults, particularly athletes.

Did the GP listen to your son's chest?

I also think Sally is right - send her a PM

No he's not puffy or anything. Last week on one day he had a bit of a swollen tummy and said it was sore, but it went away so probably was nothing.

No I haven't taken his pulse, I have no idea how! But i will look it up and try it.

He eats different things every day really, and the heart pains he's been talking about maybe twice a day every few days for a month or so.

I know what you are saying re the being fixated on getting him tested - my dad said the same thing - it's just that I am really worried about the link with his dad's cousin having the genetic heart condition I'm terrified about that and that's why I think I'm fixating on getting the tests. If the tests are normal and anything serious or potentially serious with his heart is ruled out (please God) I will be so relieved.

Yeah the GP listened with a stethoscope and said chest is clear no chest infections.

How do I send a PM please? I've tried clicking on the name but it won't let me click it.

Just checked his pulse with the help of an online timer, the kids thought it was quite funny. Counted 89 beats in the minute, seemed regular enough to me.

Just wanted to add my son had a fast heartrate on a few occasions & we went to A&E on the advice of the school nurse after it had happened at school. He also talked about feeling his heartrate/pain. His ECG at A&E was clear & they said the best thing to do is try & capture the actual pulse & advised us on a reliable app to try.

He did then have a follow up, tests & a consultation with a heart specialist & in our case it was put down to low Iron & low Vit D, we have been told not to rule out SVT but nothing showed on the tests & if it is that the frequency of the fast heart rate will increase.

This was 2 years ago & there has been no repeat.

Book a GP appointment or when it happens present at A&E.

Are you on the app or the site? It's easier to pm on the site.

It is almost certain that he is fine and it's just one of those things. Honestly. As was explained to me by a doc, 99 percent of the time these symptoms are nothing, a virus or whatever. Doctors can't test a hundred percent of the time because they don't have the resources. One percent of the time it's something.

Some of the information about cardiomyopathy on here is wrong though, and it can just come on. You don't have to be old or born with it.

I don't think you are wrong for insisting on testing. I would, and did, do the same. But try not to panic.

Thank you both.

Do you know the name of the app you used to capture it?

He is outside in the garden playing football right now, came back up earlier and I hugged him his heart was going really strongly. I'm an absolute nervous wreck at the moment but the kids are not aware thankfully.

I'm going to insist on testing, yes. x

I'm actually far less worried about your lads heart than I am about his dad's controlling attitude to his healthcare. The fact that he feels he can 'not allow' you to be involved in decisions and consultations and not communicate with you about these things is potentially detrimental to your son's health if it leads to you not knowing what doctors have said to him.

I agree 100% with this. OP, you mention DS's dad is also your DP, is that correct? All this talk of "it's his turn" and "if he let's me in the room". This is not a normal family dynamic!

With regards to the heart, we're actually going through something similar at the moment with my DS. No family history of heart problems but DS is on medication that can cause them. Our gp seems to think it is asthma! I personally don't but I'm not a doctor. So they're going to do a spirometry(sp) test and then if that's OK they will go down the ecg route.

Try not to worry (easier said than done I know!).