Ds, 19, what are these symptoms??

[medianewbie]

Violent vomiting for hours overnight so thought just bad dose of D&V. But very sore chest. Sore neck (glands like 2 hardboiled eggs). No temp but shivery.
Pale, clammy, massive headache not resolving with ibuprofen / paracetamol. Any ideas what it might be (covid?)
We are due on hols in 12 days (1st flight ever) & would really like him well.

@medianewbie - I don’t want to scare you, but I have severe heart failure following a virus. One of the reasons the damage is so bad is because of the lack of push for diagnosis and follow up. Your son is young and this is being used to minimize his symptoms. The fact that nobody has discussed his ejection fraction is horrifying.

I still strongly advise you to see your GP and get a referral for a private cardiologist who is a consultant in the hospital your son was admitted to. There is a HUGE difference between accepting the doctor's hospital medication and advice, that being in the expert hands of a private cardiologist.

Agree with this. Possibly consider putting money set aside for uni towards private cardiologist?

Although their local hospital is quite small so I might choose a consultant in Edinburgh who also has an NHS practice. I understand the principle of access to his records but a small local hospital may not have a private cardiologist operating there, and if you want your pick Edinburgh would be better.

This place is a good for private MRI scans asap - they have branches in Edinburgh and Glasgow. They are cheaper than the average private hospital.

You can either get a referral from your GP OR make an online appt with one of their GPs who will write the referral for you. They then follow up with an appt after the scan to talk it through with you.

I can't help with any of the medical stuff, I am sorry. I would avoid going anywhere near a big city right now as covid seems to rampant at the moment.

Reading through your recent posts it does occur to me that if your son is anxious about starting uni as well as his health, it could be a vicious circle. If medical advice is that a gap year to recover and regain his health is optimal then perhaps it might be better to take that decision sooner rather than later and put his mind at rest? Depending on his course there may be opportunities for some relevant work experience, preliminary study or just the simple side of learning to fend for himself more that may make it beneficial in other ways too?

Like you, I would also avoid any discussions with Drs re Covid & Vaccines. I think focusing attention on the immediate cardiac symptoms only will produce a more positive response. (Not entirely dismissing the idea, but not enough studies done yet to get the attention of medical staff who really need to take you seriously.)

One more thing to ask for or print out (not sure the access you have in Scotland) is a copy of all blood tests. A consultant may spot issues that were missed or not addressed while the initial emergency admission focused on the myocarditis.

If you want I can DM you a link to a patients’ online forum where people share experiences, etc. There may be some useful responses to specific questions.

@TreadSoftlyOnMyDreams - thank you. Our problem is more that there isn't any medical advice. I appreciate that HCPs can't advise re a gap year etc but Ds was discharged 90m after his MRI with no advice & some tablets in a bag. I asked for MRI results for & got a 5 line 'heart function normal, some minor ventricular scarring, will see you in 4 weeks just to check in. See GP if worried' letter. There may not be much to say but I've no confidence in this small hospital (from prior experience).

Then on the basis that your GP sounds utterly useless/disengaged then unfortunately you have to become "that parent" and hassle every step of the way to see the consultant sooner than 4 weeks if possible.

Have you established what is required in writing to defer the year and not lose a deposit on halls? You could separately request this in writing from your GP on the basis that he is having continuing [and logged with the GP] chest pain and you can't in good conscience send him 4 hrs away if he can't advocate for himself. Once you have it, you can sit your DS down and say that the choice is now his, or take it out of his hands and see if he relaxes or becomes stressed.

@medianewbie was he unwell before the heart symptoms came on? A cold / flu / virus? My myocarditis was 3 weeks after Covid. Nothing to do with vaccine at that point as it hadn’t been invented!! But when I did go ahead with the vaccines it came back so for your son i’d perhaps avoid those in future tbh. The cardiologist advised me not to have another (Covid) vaccine.

If you aren't happy with his treatment at your local hospital. Take him to a different hospital. A friend of mine did this after weeks of being fobbed off. Though her child was only 4. He was diagnosed with blood cancer two days later she saved her life.

You probably already know this but Scotland has PASS as an equivalent of PALS.

SADS is not a heart attack. SADS is an arrhythmia. A heart attack, or myocardial infarction to give it its correct name is a blood clot in a coronary artery which cuts off the blood supply to part of the heart muscle. Two different conditions entirely.

SADs is not an arrhythmia per se it’s a cardiac arrest caused by different types of arrhythmias. Heart attack used colloquially often covers both MI and cardiac arrest.

Ds wants to write a letter to to MRI dept to explain how frightened he was & how it could have been made so much easier. Ditto cannulation. I will encourage that.

I’m an NHS nurse and a mum to an autistic son. I would welcome his views on his experience (you too mum). I would recommend that he adds that staff should be encouraged to complete Oliver McGowan training, it’s being rolled out as mandatory in some areas. I’m not sure about Scotland.

www.olivermcgowan.org/

Get him seen by a gp!

Well obviously the arrhythmia causes cardiac arrest or it wouldn’t be called Sudden Adult Death Syndrome. If heart attack is used to mean a cardiac arrest then it’s incorrect. Colloquially doesn’t mean it’s accurate.

OP first posted on 30th June and there are over 400 replies on the post so it's moved on slightly..

Surely most of the exhaustion would be down to beta blockers

Emergency appointment with Quack.

Call 111.

A&E if desperate.

“The worst risk factor for a bad outcome for OMI heart attack is young age, as cardiologists cannot believe someone young can have a heart attack.”

hqmeded-ecg.blogspot.com/2023/01/a-teenager-with-chest-pain-troponin.html?m=1

I was going to ask if they do Autism passports for hospital there?
I couldn't open the one that the Specialist Midwife emailed to me, but she said that I could find one online and fill it in and email it back to her instead.
if you can perhaps print one out, and carry it with you / your son, in case of another hospital visit / hospitalisation ... ?
Although didn't help much here. So it was probably better if I'd printed mine out and carried it with me too for all attending staff to look at, if that would change in any way the way of treatment. I put needle phobia, but still had to have a canula for 2 weeks, changed from arm to arm every 3 days and one that leaked suddenly 😅
Your son is brave to put up with a canula, I felt like such a big baby the fuss I was making about the canula and how painful it felt. I also asked for the Emla cream first, which they did or didn't use depending on the health professional on shift each time 😅
Hoping that your son is feeling better 🍀
Switched it after the first page, to reading just your own comments, to catch up with each part of your hospital ordeal.
Hoping he makes a full recovery.
xx

Late to thread - glad your DS is doing OK. I had something similar 7 years ago - no vomiting etc but chest pains and rang 101, sent paramedics and they took me to A&E, raised troponin and said I had had a heart 'incident'. Ended up staying in for a week and having ultrasound, Xray and angiogram, then they let me come home saying it must be a viral myocarditis and they thought I was fine, but would do an MRI to check.

The MRI was months later and after that was clear they took me off all the meds and said it didn't count as a 'heart issue' and didn't need declaring on things like holiday insurance going forwards.

But the cardiologist did say when they discharged me that I might well carry on having twinges for some time, and not to worry. And to be fair I did - maybe for a year or two, on a very minor level.

I realise my experience wasn't quite the same as your son's - and there was no mention of an issue with a ventricle - but they were pretty chilled like your consultants seemed to be, and said similarly - any issues speak to your GP. I just thought this might help to reassure you somewhat?

In terms of how they treated your DS and their lack of understanding of his ASD - I would definitely take that further. We all know how busy hospitals are - but some basic training could have made his experience so much better - and the lack of it could have triggered something far worse like a meltdown or him discharging himself when he shouldn't! Which as well as being awful for you and him, could have had long term ramifications, and could also have led to more time-consuming work for the staff involved so lose-lose all round.....

Sounds serious. You never ignore vomiting all night.

I had similar symptoms when I had peritonitis. Normally the abdomen goes rock hard, but on that and two subsequent operations for peritonitis my abdomen was as soft as normal and each time it was missed with almost dire consequences.

Are the ibuprofen etc keeping his temperature down? I think if you believe the symptoms are that bad that he needs to go to a&e.

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