Childhood Arrrhythmia

[loopydoo]

Hi - before xmas, DS (7yrs) had a terrible pain in his chest quite out of the blue. We were all chatting in the kitchen when he suddenly gripped his chest and throat and said he couldn't breathe.

I was really worried and about to take him to A & E but sat him on the worktop and calmed him down until it stopped.

Since then, he has complained a few times saying "my heart hurts" and so I kept checking his heart whilst he was sleeping. It felt all over the place, mainly as though it was coming out of his chest and really fast. Even though I felt it at rest, it also felt as though it was doing an extra beat; kind of like.........
bum, bum
bum, bum
bum, bum
bum, bum,bum ,bum
bum,bum
(IYSWIM?)

So a few weeks ago I had him checked out with the GP who listened to his heart for a couple of mins and said she thought it was arrhythmia, common in children. She said if he got pains again, to take him back and that she thought the down beats were faster than the up beats (sort of how she worded it .

I'm still owrried he wasn't sent for an ECG - should I take him back or does this sound common?

As far as I know, interpreting an ECG is far from an exact science and I cannot imagine something your average GP gets a lot of practice doing. In addition, there are plenty of other diagnostic tests including angiograms, CT scans, blood markers etc.which will need a specialist to perform.

Just looking at sites though, extreme chest pain, syncope (fainting) and very rapid and irregular heart beat are symptoms that warrant urgent examination.

It will probably turn out to be indigestion but as a mother, I am sure that you would like the .1% chance that it is something sinister ruled out.

The GP is right in saying that chest pain in a child is uncommon but it is absolutely possible for a child to have a condition that causes ischaemic heart disease. I have one such child sitting next to me on the sofa.

I agree with the others that the GP isn't the best person to diagnose discrete arrythmia issues. It probably is nothing but I would insist on a referral to be sure, especially with the pain.

I've debated weather or not to post this but anyway here goes .... I casually mentioned your post whilst at coffee with some collected this morning and without giving ourselves away we have quite a lot of pead cardiac knowledge amongst us !!! Everyone was a little taken aback by the gp 's attitude ...without scaring you childrens heart defects etc are rare but they do happen ! It is perfectly reasonable to ask for a pead cardiac review ... With the greatest respect I am not sure how many pead ecg's a gp will have looked at to interpret..... At the end of the day this may need a specialist input even if just to rule out anything suspicious ....

Thank you so much PUMBA - it's funny because I was just reading in my Practising Midwife mag this month, an article all about language and its use to parents/patients within the NHS; saying that often, patients feel isolated by a casual 'it's fine' or become really worried when hearing really complex words/sentences etc. I think in my case, the GP's very relaxed attitude about his heart of all things, made me even more worried.

If I had been her, I might have said something such as, "I can see how worried you are, let's send him for an ECG".

Instead, I got something moer along the lines of " well, I'm not sure the ladies who do the ECG in surgery will have sticky patches for children but I'll get him one booked." She probably thinks she did a good job of allaying my fears but in reality, the tone of her reply made me feel uneasy about asking.

Oh well - I'll make sure I get a copy to keep of the ECG and then take that to Papworth. I'm hoping it will be normal, but you're right, it will help to rule more sinister things.

It is really important to remember that so much stuff doesn't show up on ECG's. An ECG alone is not a deffinitive answer. Just because it shows nothing it DOES NOT mean nothing is wrong.

I would really reccomend that you saw a paediatric cardiologist.

Pleaseeeeee!

Hi Charlie - so how do I do this without undermining the GP?

Just let her do the ECG but book a private paed cardio app anyway?

Theres a few ways of going about it. Where abouts in the country are you? I can reccomend a paeds cardiologist to you if you tell me where you are based.

You have the right to ask to see a paeds cardiologist.

You can simply walk in to your appointment and say "I really don't want you to feel like I am undermining you, but I know that there are things that can't be seen on an ECG that could be causing his pain. Young children do not complain of chest pain and become incapacitated for a few minutes for no reason, and it would help me put my mind at rest if you could refer me to a paediatric cardiologist"

Let her do the ECG anyway, you never know, something may show up and she can make a referal there and then.

If you wated to go private, tell me where you are and I will tell you who you who to see and give you phone numbers. You would be looking at somewhere between £80 - £160 for a consultation with a paediatric cardiologist, but I would be pretty sure it would be definitive; if they are not concerned, you don't need to be, either.

You won't have the option to ask for a second opinion if you go private, though. If your GP refers you and you get an appointment with a paeds cardio, and you are not happy, you have the right to ask for a second opinion with another consultant.

Thanks Charlie - we in the east of england (suffolk). I guess Papworth is closest?

Haven't got ECG app through yet.
Been talking to a lovely lady I contacted last year from Loughborough uni. They research eating disorders in children as we suspect DS also has Selective Eating Disorder; a further worry as to why he may something up with his heart. We don't want him to be losing heart muscle due to him not eating so trying to sort all of this out and study at the same time!

Thanks for your post though - will catch up once I know more.

Oh and if the ECG doesn't show anything up, then we'll book a cardi paeds app anyway.

Well - an update.

DS went for his ECG this afternoon (with a strange nurse who looked disapprovingly at me and kept saying in a surprised voice "oh, I've never done one on someone as little as you before".

Once she had placed the pads on, it seemed like less than a minute (but I guess it wasn't) and she was taking them off again.

She said "normal ECG" read from the screen and I asked her if the doctor read the results or simply took it as read that it's normal. She said they never believed the machine and always read the results.

I'm paranoid now that it's not normal - but I guess it's because I had been so worried.

Anyone know if there's a way of entering the readings online and getting an opinion? (PR level/QRS etc)

His heart rate was 88/min - so I guess normal?

That is one of the problems with an ECG - it is a very short ( barely a minute) snapshot. It's perfectly possible at that point that the ECG was 'normal' but that he is having arrythmia at other times. A 24hr or 7 day monitor may reveal more.

How has he been?

Seemingly fine thank you saggarmakersbottomknocker (blimey, your NN takes an age to type ).

So perhaps it'd just be easier to book a cardio app at Papworth and that'll include a more detailed look at it with a cardio rather than just GP.

I got them to photocopy the results so I have that.

Do you think if I emailed the readings to a private consultant's secretary at papworth, they'd deem me bonkers? I just thought they'd be able to say whether he should come for more tests without me booking it/driving there/taking him out of school etc?

I guess if I explain that he had it done at the surgery, bla bla bla, they might tell me it looks completely normal or that it needs looking into further?

That article is really interesting SydneyS.

So do you think the private hospital will be helpful if I email for advice and ask about a possible appointment?

Hi loopy

If you can get into London the Brompton have a good reputation. If the GP doesn't refer and you're still worried you could try to find out if one of the paed cardios there takes private and then transfer to his NHS list (if there is an ongoing issue).

Has ds always had eating problems?

That's what I thought I could do for Papworth as it's so close (40 mins). I found a good paed cardio consult. there so could ask for an appointment with him if needs be. Just waiting now for GP to comment on the ECG then will decide.

Yes, DS has always had Selective Eating Disorder - although I didn't know it was called that to begin with. It was basically from a year. He was weaned at about 6/7 months and then his interest in food decreased rapidlyfrom 12 months-ish I guess. I breastfed him until 23 months though - thank goodness! At least he was getting that from me plus some formula.

Oh where are you Sydney (or is that a stupid question considering your username?)

We are looked after by the team at Birmingham, previously at the Children's but dd has recently been taken on by the adult team as she's 18 now. Another good thing (currently) at the Brompton is that they have an adult team within the hospital so no moving about once they get grown-up. I say currently though as there is are some changes afoot with children's heart services; they are reducing the number of centres and the Brompton may be at risk but I know many families who are looked after there and they don't have a bad word to say about them.

Loopy - I asked about the eating thing as many children with heart defects have feeding problems as babies but also that some of the minerals/electrolytes such as potassium, sodium, calcium, magnesium can have an effect on heart rhythm.

Ooh - that's very interesting saggar. Whilst I knew that eating disorders can mean the heart loses muscle mass, I didn't think about the minerals/electrolites etc. perhaps I'll get him onto a chidlren's vit and min supplement. He used to take daily vits but then it fissled out a bit (bad mummy).

I will read up a bit on the mineral thing though. He has loads of calcium as he's a milk monster.

dd has structural heart defects but a late diagnosis means some areas of her heart muscle have been destroyed so the electrical pathways are a bit random and her heart's response is slowed/hypokinetic. Generally she has good rhythm though apart from when her heart is under stress.