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.

[WannaBe]

Next time he has the palpitations go to a&E then they can get a picture of what's going on at the time. And stay away from Google.

[WipsGlitter]

First stop is your GP. They should take this seriously.

Step away from Google.

[worried872]

He only seems to have it momentarily, the first time he said his heart was "sore" only for about 30 seconds. Another time he said it was like "squeezing" in his heart , and then the next times he said stuff like it's thudding too fast or thudding then stopping, or it's happening again. I haven't wanted to scare him, although I have kept asking, when he gets it , if it's still there and it seems to go within a minute, so not sure if A and E would be able to see what's going on at the time, but thank you I will try that anyway if it happens again. I know, re Google, I wish I hadn't looked. Struggling (but so far managing) to keep a calm facade for everyone else, but inside I'm terrified.

[waffles1990]

Does the GP know about your family history? Particularly the sudden death of the Uncle.
I hope its nothing but if it were me Id want an ECG too for peace of mind.

Think the CRY (cardiac risk in the young) website could give you some pointers on getting tested if you havent looked already

[worried872]

Wips, I took him to see the GP about 2 weeks ago, he just listened to his chest with stethoscope and then said boys his age don't get heart problems and something to do with the intercostal muscle(?) . I was reassured at the time, but now thinking on the past week or so him being tired (asked his dad to carry him when walking yesterday, keeps asking for naps and mentioning being tired) which is totally out of character , and then last night realising as well the family history, and also when he was a toddler his lips used to go blueish sometimes when crying or ill or just randomly, he was seen but no tests done I don't think.

His dad won't let me go into the GP appointment on Tuesday (at least I doubt he will, I took him the first time), and will blow up if I take him to any appointment or testing for anything this potentially serious without him agreeing first etc, but at this point I'm starting to think I shouldn't care about what he thinks, just so worried about DS.

[worried872]

Hey Waffles, I did look at that website. I also called my sister who's best friend is a paediatric nurse, she said we could wait weeks / months for testing, even if the GP agrees to refer. I have no money (on JSA for first time in life) , but I think I'll borrow / somehow find the money to get a private ecg and echo done. Terrified of the process / getting results, but DS is most important here.

The GP doesn't know about the family history, it was a couple of days ago when DS was saying about needing a nap quite often, that it dawned on me about the history.

The family history is -

• DP's cousin, a few years ago, aged 30s (never met him they live in Ireland), but MIL got a call to say he'd collapsed during football and was diagnosed with an underlying heart problem. Don't know what specific problem, but think there were mentions of genetic, so that was what originally got me googling and worrying especially about something callled Cardiomyopathy. Don't even want to say it. I have no idea about the cousin or what happened to him after or now, and P (DS dad) hung up the phone when I asked about it, and I doubt will talk further. I might ask MIL even though we don't speak, DS did say he'd been with his gran and told her one of the times the palps happened.
  

• My sister recently had a baby ds who was diagnosed with downs syndrome and heart problems in the womb, and sadly he didn't live )-: , I called her but didn't feel able to ask what the heart problem was.
  

• My own mother who's deceased, she had a heart "murmur" diagnosed when pregnant with me her eldest, she was 27 at that time. My dad says the doctors were quite worried at the time and she was put on medication (I don't know but suspect maybe beta blockers), which she was on for nearly a decade, until she was told by a new GP when moved practice , that she didn't need them and hadn't for ages, so stopped them. Googling this leads me to some kind of mostly temporary pregnancy-induced Cardiomyopathy, which again is worrying.
  

I really need to be forceful with the the Docs I think. Really struggling with the horrible thought that something could be wrong with DS ..

[sadie9]

The family history doesn't seem that joined up really. They are all heart but not really connected. Cardiomyopathy wouldn't affect a 6yr old, it takes years and years to build up, it's a narrowing of the arteries. Heart problems are very very common with babies who have Downs.
If the tiredness is just the last week, the two things could be completely unconnected, he could have some virus or other, just causing him to feel more tired than normal.
There is a chance by this time next week, your son will be absolutely back to normal.
Why don't you keep a Diary of any time he mentioned it. See is it after meals, after exercise, after playing his playstation etc. Is he left handed or right handed?
Also remember your son says it's his 'heart' when it may be a muscle in his chest he is feeling or something else.

[DianaMitford]

Sorry but this would really worry me and I would be taking him to A&E right now. His description of the thudding sounds like an irregular heartbeat. Could be totally normal but also could not.

[PrincessHairyMclary]

DD sometimes complains of a tight chest and her heart hurting when she's running around. She was given an inhaler although no diagnosis for asthma and that relieves it.

[worried872]

I know what you mean about the family history not joining up to anything conclusive, it was the thing with DP's cousin and also the thing my mum had which is making me worry the most because when I looked up palpitations and tiredness in 6 year old Cardiomyopathy came up and sounds like what these family members may have/had and how there is a genetic link. According to everything I've found, it can and does get diagnosed in children. Either genetic and born with it and symptoms come up at any time or age, or it just happens. Re the family history I'm trying not to jump to anything as neither me nor DP have any histories of anything although we both get palpitations sometimes, I had a 48 hour ecg aged 19 because of my mum's 'murmur' and it was clear.

I have thought about taking him to A&E and to be honest that's what I feel like doing. What's stopping me though is that the episodes have been so short and infrequent (not connected to anything in particular, activity, eating etc) - maybe about 10 times this past month for less than a minute, that I think that unless he was actually having it during the time in A&E then they would just send us home. I'm not very good at being assertive with doctors, but am so worried I am considering going in and INSISTING on an urgent referral for tests, or at least a referral letter so I can find the money to get him tested privately very very soon. DP is just switching off the phone for some hours whenever I call, doesn't want to listen or speak about it he is getting angry at me, and is staying over with DS at MILs whilst me and my DD are here, due to come back tomorrow (this is normal and happens often the staying over, but I really want DS with me)

I am almost too scared to know what to do, I am desperate to have him tested but I am also terrified of getting the results, praying just praying that it's nothing serious.

[DianaMitford]

Oh you poor thing. I've felt exactly like this in the past - I know how horrendous it is.

If you go to A&E, explain the episodes and family history and say how worried you are. Explain that it's occurring randomly but that you genuinely believe there's a chance of a heart defect. I sincerely hope someone would agree to an ecg at the bare minimum.

[RatherBeIndoors]

I can see why you're concerned, but as PPs have said, Downs itself often occurs with heart conditions, so as a combination it's not something to worry about since your DS doesn't have Downs. A surprisingly high proportion of people have what's known as an innocent murmur, which may be what your mum had - unusual heart sounds but not dangerous.

However, this is your son and you're not going to stop worrying until you know for sure (and we'd all feel the same). If the next GP appointment doesn't lead to a referral to get checked at the hospital, I would take him to A&E and tell them about the symptoms and about the cousin with sudden cardiac issues when young. They might catch something if they test on the spot, but if not, they can give you a referral to paediatrics directly, for more testing and review, to hopefully put your mind at rest.

(P.s. The intercostal muscles are the muscles in the wall of the chest that affect breathing - when pulled they are really painful.)

[NK346f2849X127d8bca260]

I would take him back to the doctor and mention the family history.
My ds gets palpitations and when going through a bad bout of them he was referred to paediatric cardiology where he had an echo, ECG and given an event monitor that he had to wear for two weeks.
It all came back fine, but it was noticed that he had a pronounced sinus arrhythmia, normap finding in children.
I did mention the heart defects in our family and our doctor seems to err on the side of caution so decided it best he was checked.

[worried872]

Thanks, I really appreciate all the support that's been given here. DP (DS dad) is denying everything and switching the phone off all the time. I've spoken to my family but still I'm absolutely terrified.

Yes, it's not the palpitations themselves which worried me as me and P have them, it's the combination of them beginning about a month ago, and the definite tiredness and lethargy he's been having (although I'm hoping like mad that is a short term thing and unrelated since I've only noticed him tired for about a week), the family history stuff, and the previous lips going blue when he was a young toddler. All of that, and the statistic of 1 in 100 is making me absolutely sick and frozen with fear.

Its making me even more concerned that as I said, the GP so far only knows about the palpitation like episodes , since that was all that I'd noticed at the time when I'd taken him previously 2 weeks ago. No doctor yet knows about the other stuff. That is making me think that I should take DS asap or even to A&E and demand testing, but even so I cannot as "D"P won't be back with him until tomorrow afternoon. I had already booked an appointment for DS to go with his dad to his dad's GP on Tuesday morning, booked that when first noticed the tiredness as well and he had a bit of a swollen stomach although it's was away yesterday. If I called his dad and said I'm taking him right now, then I very much doubt he would let me pick DS up. Actually he mentioned yesterday going camping with him for the night (God). He can be quite controlling over DS and goes in denial a lot if he's worried so I'm also aware that if I find the money for private testing quickly, then his dad would possibly refuse to allow it anyway. Does anyone have any suggestions for how to go about dealing with him, and also if I'd need to pay for a consultation first as well as an ecg and echo, or can I just go straight to the testing? I could afford the tests from the prices I found, but not the additional consult fee as well, that would take around 2 weeks to get.

I just don't know what to do. Keep going through all the scenarios in my mind. My sister keeps saying there's nothing I can do etc and I know that's true, but I am so so worried for him and it feels so unreal. I just pray he's OK and it's nothing serious.

[worried872]

Thanks for commenting NK, I'm so glad for you your son is OK and everything was fine. x

My sister was adamant I need to have a 'plan' (although right now it seems to be to get through the next minute and I'm so scared) and suggested that I make a GP appointment for Wednesday or even later in the day on Tuesday so that if his dad doesn't explain enough or whatever, then I can go straight back with all the info, how concerned I am and family history stuff and insist on referral, then if they won't (hopefully they will), then ask for even a letter for referral to private. Feel so helpless that I can't make everything automatically OK even if I can get the tests done faster, just have to pray and pray that it's nothing serious heart-wise.

[Roomba]

This may sound daft, but could he be anaemic at all? I'm currently suffering with this and am exhausted all the time, very pale and keep getting palpitations as a result. May be worth considering and asking about at the GPs?

[worried872]

I don't think so as he has a great diet, but I'd rather it be anaemia than this, although I know anaemia is not good, have had it.

Remembering that MIL also mentioned years ago a nephew (I guess another cousin of DP) who died suddenly in a car accident age 17, but not sure if he was adopted as there was one who was adopted not sure if the same one. Just watched a video on Cardiomyopathy and sudden deaths in a car accident or drowning is another risk factor.

I had a great aunt who died this year aged 90-something who had a pacemaker as well.

I'm thinking I must sound crazy now, but I am really getting absolutely terrified for DS. I think I need to ask MIL more about DP's cousins but I don't speak with her anymore, for a couple of years now. And DP would be seriously angry if I contacted her out of the blue as he accused me of "dragging other people into craziness" this morning on the phone.

I need to speak to her somehow, she dotes on DS so hopefully will listen and shed some light on the cousins. Should I call her and ask to meet her? I even thought about going to her house (although P and DS are there) and hanging around until she comes out to speak with her, because if I call her then P will go crazy especially since DS there.

I actually feel as if I'm going crazy with worry. No idea what to do. Not eaten in 2 days and slept only a couple hours. I just can't, I'm so terrified about these symptoms and history.

[dickcheese]

This is intended for babies but you can google 'think heart'

Heart rate
energy
Appearance (pale, mottled etc.)
Respiration (breathing too fast or slow)
Temperature

My son had surgery aged 2 and he had all of these symptoms but I didn't know they were symptoms until after he was diagnosed. Also his problem (atrial septal defect) is quite common to not be picked up until later in life so worth checking out for your peace of mind but even if it is his heart it's not the end of the world. Hope you find some help from your doctor

[worried872]

Thank you x

We did have worries re him having blueish tint to the lips when he was younger, but was told by consultant it was no problem.

He is generally very pale anyway, past month or so the palpitations, past week or so complaining of fatigue which isn't normal for him. he sweats sometimes in his sleep but that's not really new.

I'm going to try to speak with MIL somehow, because she is in the same GP practice as DS and has been for 40 years and I think that she will know more about DP's relatives and also maybe be able to come with me to the GP. I don't even have the words for how terrified I am right now, with the above and the genetic stuff, especially with his dad's cousin(s).

Can't even think straight. So scared. I love him so much.

[NK346f2849X127d8bca260]

Our family history is heart valve defects, myself, my mother and my 12 year old dd all have one.
You said your mum had a murmur, was this ever checked? Murmurs, some are innocent, can be due to heart valve abnormalities and fatigue and palpitations are a symptom.
You say private is an option, are you happy to say what area of the country you are in?

[NK346f2849X127d8bca260]

Didn't make that clear!
What I was trying to say, if anything is wrong with your son it may not be one of the electrical fault ones or cardiomyopathy.

[worried872]

My mum died just before I was a teen (not of natural causes), so hard to know exactly what it was, but I do know that she had a heart problem of some kind (my dad calls it a 'murmur' but doesn't pay much attention to medical stuff so could be wrong) which was found whilst she was pregnant with me. All I know is that the doctors were very worried at the time about the strain of birth on her heart etc, but I was born without complications although they kept a close eye, and also that she was on medication for the heart prob tablets, at least until I was about 7 if not longer and then she was taken off them by a GP who questioned whether she still needed to be on them, so she was told to stop taking them. This is from remembering what she told me and what my dad says. She did get palpitations, as do I since about age 16 - but mine usually triggered by stress, caffiene, smoking, not eating, temp etc and I had a 48 hour monitor which showed nothing so barely notice them anymore.

Thank you so much for your very considered response, I am so worried I can barley even think straight, it's the palps, unusual fatigue, when he used to get blueish lips and the family histories (particularly the cousin of DPs who collapsed during football in his 30s and was diagnosed with a heart defect although I don't know which one) - it's all these put together that have me absolutely sick with worry.

It's right though that obviously I'm not a doctor and previously to last night I had never heard of these heart problems. I do need to try and think that yes, if it is something (which I hope and pray it's nothing), but if it was, you are right, doesn't automatically mean it would be cardiomyopathy or electrical. I've been really worried since I read about the genetic link and the link with under 45s collapsing during sport etc , when DS's second cousin (DP cousin) had that happen.

I'm sorry to hear about your and your families conditions, may I ask how you came to be diagnosed?

I'm in Central Scotland x

[NK346f2849X127d8bca260]

I have a prolapsed mitral valve (MVP) quite common apparently, not discovered until I was 10, so far it has given me no problems..fingers crossed.
My mum was born with a bicuspid aortic valve ( BAV) she was unaware of that until she became quite ill symptoms ( crashing fatigue, breathlessness ) at the age of 72, cardiologist was shocked she got to that age without problems! She had heart surgery to replace the valve.
My daughter has an abnormal aortic valve with mild regurgitation and an abnormal aortic branch, she will need surgery at some point in the future. We found out about her defect when she was 9, she was on a medical research project for Kawasaki disease, ironically as a healthy control sibling.

[CrotchetQuaverMinim]

Could it be something like precordial catch? I used to get that a lot as a child, and it's quite painful and feels like something is up with your heart, but it's not. The suddenness of it and the pain can be enough to make your heart pound afterwards, though, and also to draw your awareness to what your heart is doing. But it's actually not your heart at all.

[PrincessHairyMclary]

With all the kindness in the world you need to step away from Google.
Wait to speak to the GP again, making it clear about the family history.

Do you have a history of anxiety as you do seem extremely anxious and catastrophising ofcourse it could be Mothers intuition but you are going to make yourself I'll worrying as you are and Id be a bit concerned about your DH and lack of support as well.