Weird heartbeat in son and he keeps on randomly falling asleep in the day time

[Thedogstolemyheatedblanket]

Am seeking medical advice/waiting for blood tests results etc but I find it so helpful to hear from ideas of others in case it means I notice anything else to tell the doctor/get a better idea what kind of things it might be.

DS (13) has been off school for a week now after suddenly developing what he called "weird heartbeats". He gets them mainly while moving around, and it can feel pretty unpleasant and makes him feel pretty tired (hence not being able to manage school) . After a few days rest he tried a tiny dog walk round the block with me today and then said he felt dreadful and sick as well.

I've also noticed he is randomly falling asleep very suddenly sometimes. Like straight away in the car after I picked him up mid morning when he had attempted school. Or today he was asleep sat upright in his chair just minutes after we had got home from the walk.

He's had an ECG which showed some ectopic heartbeats (PVCs) but not many because by the time he had it he had been resting for a few hours (waiting at hospital) so his symptoms had subsided.

Like I say, we are waiting another doc appointment tomorrow and outcomes of bloods etc but I sometimes find ideas from others helpful in preparing me/giving an idea what else might be relevant to mention to the doctor

Good you're getting him checked out. Not wishing to diagnose but before I was diagnosed with POTS and started on meds for it standing/walking made me so lightheaded/dizzy/nauseous, horrific palpitations at times too. Mine came on after a bout of covid, has he been unwell recently?

Oh that's interesting... He has had a couple of really awful coughs this autumn , both had him in bed. One he needed antibiotics for. But it was about a month before the onset of these symptoms.

Will look up POTS, am sort of aware of it and how challenging it can be but was quite hazy on the details. Thank you

Reading about it I don't think POTS fits, it's not on standing up he has the issue but on exercising, like it he has to climb stairs /walk about etc

But thank you and of course it's still worth considering as that's only what I can glean from a quick Google

Can you afford a Kardia? Its about 100 pounds on Amazon. You pair it with an app on your phone and it can do a diagnostic ECG with you just resting your fingertips on it. Given my long experience with trying to capture heart rhythm problems that never ever showed up at the doctors office, its an excellent way to get the hard evidence of what is happening. You can save the recordings and email them to a doctor, so everyone has some data on whats going on.

In the meantime, keep pushing hard for medical evaluation, he should be seen by a pediatric cardiologist as soon as possible. Any heart rhythm problems combined with dizziness or chest tightness is a big red flag.

does ds have a good diet. Sometimes lack of electrolytes can put a heart out of whack,you could try a magnesium supplement before bed and push milk, bananas and salted crisps (calcium, potassium and sodium respectively)

I'd go back and ask for more ecgs. A lying down one doesn't cover enough to rule out electrical/mechanical heart issues. Suggest lie down to stand up ecg. Exercise ecg and echocardiogram ecg, plus 24hr hotter monitor. As he's over 12, call CRY (Cardiac risk in the Young) tomorrow and get their advice. Also the genetic nurses on the British heart foundation are good for recommending departments and tests.

I would not trust a fingertip heart-rate monitor (they mostly track blood flow, not ECG which is the electrical signal). But a sports heart-rate monitor like the Polar or Garmin which is a band around your chest should be able to give a decent signal for continuous heart rate monitoring.

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Oh thank you! I will try those calling those places

i was thinking PoTS too. My son has it. it's a very poorly understood and difficult to manage condition. as well as a dysautonomia

Did it come on very rapidly and randomly ? My son has no symptoms till last week and they came on quite suddenly and only ease when he rests
He was loving life and school and all of a sudden he can't do anything

@Thedogstolemyheatedblanket
apologies for fragmented posts. phone was playing up.
my son was absolutely fine and then had acute appendicitis and emergency surgery. he was never the same since and really noticeable symptoms and episodes started a year later.
he was diagnosed by a paediatrician who knew about the condition and did the tests on his heart rate that proved it.

he has the definitive diagnosis of dysautonomia of which PoTS is just one of a range of conditions.

it's very poorly understood, often dismissed as panic attacks and can be tricky to manage but my son is starting to get back to some sort of normal life.

there could be other explanations for your sons symptoms so a trip to the GP would be a good starting point. Maybe keep a symptom diary as that can be helpful in spotting patterns and triggers.

@starrywalls thank you and no need to apologise!

(And yes, don't worry, we've already seen doctors and have another appointment today. It's just I find sometimes these things take a while to get to the bottom of and sometimes hearing from other people with ideas as to what it might be helps me think of other relevant information to tell the doctor)

Ps am glad your son is starting to get some normality back

@Thedogstolemyheatedblanket they will probably decide to do a 24hour ecg to get a proper idea of how this is and how often it is happening.

Please don't do this, it is not a diagnostic ECG. When I worked in Cardiology we would cut the 'diagnosis' off the machine that thought it could read ECGs.

IMHO he needs a couple of further tests.

As symptoms happen on exercise then a stress test, but also a 24 hour halter monitor and possible a cardio memo or similar event recorder.

The stress test will have him walk on a treadmill while his ECG and BP are monitored. It tries to induce any abnormal rhythm brought on by exercise.

A halter is fitted and records a rhythm strip for 24 hours which is then examined for any abnormality.

A cardio memo is a small device you carry with you to make a recording when you have symptoms. Then you either return to the hospital or it can be played down a phone line.

It would be useful to keep a diary of what happens when. Not just with the symptoms but when he eats, when he does exercise and when he has a poo. Also if he is falling asleep that is relevant too. If you can record his pulse at the same time. Is it regular? Is it fast or slow?

If he gets a halter monitor he will have to record that then.

I know it is worrying but a diary is useful.

Thanks @sashh ... They are talking about 24 hour monitoring but say he needs a paeds referral first and they will decide, and so it sounds like this could all take some time.
I guess we have to be patient but it's very hard as he isn't able to do anything and he is gutted about missing school (he loves learning and has great friends)

Actually a Kardia is well studied in clinical settings, approved by the FDA and recommended by many cardiologists as a front line diagnostic tool for capturing sporadic arrthymias. Given the state of the NHS and the chances of DS seeing a specialist any time soon, it might be worth trying a Kardia to gather information to show to the GP to try and speed up the referral if necessary.

Thanks seatoski will see what doc says today and if things look like they won't happen quickly will consider options to get some extra data at home

Blood tests are all fine and doctor says the letter to paediatrician requesting 24 hour monitoring went a few days ago. Am going to try and ring one of the charities suggested later though just to see what extra advice they can give. My son is just fed up as he doesn't feel able to do much at all and he doesn't like missing out!

Do you know which pediatric practice the letter went to? If you do, you could try calling the admin there to check they have received the letter and get an idea of waiting times for the monitor.

In the meantime, dont be afraid to take ds to A and E if you are concerned.

Thank you, we live equidistant between two hospitals so I'll ring the surgery and ask and then call them. That's a good idea, thank you.

And yes, I've asked him to tell me if he feels worse at any point and we will nip back to a&e

In a clinical setting is totally different. In a clinical setting someone qualified will read the rhythm strip.

Also it is designed to detect AF, the main feature of AF is an irregular ventricular rate. A feature of a child's normal heart beat often features an irregular rate due to respiration.

A device is only as good as it has been programmed to be.