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.

I had myocarditis after a virus at 18. In those days there were no MRIs

This is the issue. Many viruses, including Covid can result in myocarditis, some to a greater degree than others and Covid is known for it. Also, it is acknowledged that the Covid vax can cause myocarditis however, currently assumed at a lessor incidence than Covid itself hence a positive risk/benefit ratio. It’s a problem with Covid vax in general in that many adverse reactions double up with those that will occur naturally with Covid but to a lessor extent, so again, overall it’s about benefit/risk ratio taking all of that into account.

I woild attend A+E with those symtoms.

Covid causes myocarditis at a higher rate than the vaccine does. Since he had Covid more recently, it’s far more likely that this might have caused the myocarditis than the vaccine 2 years ago.

Covid isn’t simply a respiratory infection, it has vascular consequences - as I know for two different reasons in my own family.

The myocarditis might be unrelated to either Covid or the vaccine, of course.

I hope everything will work out, OP.

I’ve also read that myocarditis caused by the vaccine is usually less severe than that caused by Covid.

As you say, it’s about the benefit/risk ratio.

Covid was like this for me

The exhaustion could be long covid which could turn into ME and as a sufferer myself I just wanted to stress the importance of making sure that he rests as much as possible. It’s so important to rest and recover after a virus to make sure there aren’t lifelong after effects that can be life changing. Obviously the heart is a separate issue though.

Hi OP
Just wondering if you have thought about giving your feedback via Care Opinion? In my experience this usually results in a very quick response from the NHS.
www.careopinion.org.uk

I know an 18 year old that had one at 13! The hospital said it’s rare (at 13) but we do get them

Hi OP,

I just read your thread and I'm concerned your son is still feeling tired and with low level chest pains.

Acute myocarditis can take several months to resolve but the longer it takes, there is a risk the inflammation will damage the heart muscle.

I live in Australia and have similar issues with hospital discharging patients with a diagnosis but without a proper follow up plan. I have no idea if you'd be able to do my suggestion in Scotland but my advice is to see your GP and get a private referral to a cardiologist that's also a consultant in the hospital your son was admitted to. It'll cost you money to see him but he'll be able to run all the tests needed under the NHS and admit your son to hospital again if he needs more specific tests.

Thinking of you and your family. **

We’ve all just had Covid. The sickness/fever etc was horrible. Probably the worst dose of Covid I’ve had.

I hope your DS is improving, sadly three of our friends, although in their 40’s not with youth on their side like your son, have had heart/blood clot issues a few weeks after Covid. I don’t think we fully understand its consequences yet, it’s not just a cold…

I don't want to go too far down a covid vs vaccine rabbit hole as I'm more interested in his likely recovery timescale. Hanging around here for a year, bored & lonely, with indifferent NHS care, vs possibly better care & a new challenge & new friends seems a no brainer. But he can hardly get out of the house even for short accompanied pleasant 'tasks' like lunch atm, which makes leaving home & starting Uni, as a person with Autism, Dyslexia, Anxiety (& poss ADHD too) seem unlikely too.

I spoke to a helpful nurse on the BHF helpline. She said if it were her son she wouldn't want him going off to Uni in a month without having both flu & meningitis vaccines at least a month beforehand - she said his Cardiologist will know more & can recommend IF & which vaccines to give (depends on if they can work out why it happened) but as they all tend to go down with 'Freshers flu' he needs to avoid strain on heart / immune system for 3-6m.

I think I need to work out what to ask Cardiologist re scarring & bring appt forward if possible. If not I might try to persuade him to have a Day Out in a big city. When his chest gets sore I could take him into A&E (I'm reluctant though as that's not what it's for, & I don't want to cause more stress) I would hope they could check his T levels & heartbeat & poss access his MRI on his health records but I wouldn't bet on that as almost everything is stored on paper still where we live.

Exhaustion is actually normal with myocarditis and it can take a long time to clear.

@Alondra makes a good suggestion.

I'd be straight on to that doctor who said that young people don't have heart attacks - yes they bloody well do. Otherwise there wouldn't be a condition called Sudden Adult Death Syndrome.
Ignorant doctor!!!

It's very rare but to make such a sweeping statement like that (even if the doctor was trying to reassure you) it is very dangerous and you might sweep other symptoms away without a second thought.

I do hope your DS is feeling better today and I hope you're managing to cope with everything that is going on around you.

sorry, posted without reading updates.

Xpost - realistically he’s not going to uni in a month.

It will take several months to recover, it could take 6 months easily. And it can recur.

@Alondra I thought a long slow recovery would just be frustrating. I hadn't realised that damage might still be occurring? He's on betablocker (Bisopralol) & also Dapagliflozin atm.
I'm not sure what questions to ask (I looked on a FB support group page & people were talking about ejection fractions? I don't know if 'normal heart function but scarring to ventricle' involves that?) or what Qus / tests to ask about? Sorry I appreciate you are not a medic & am aware of usual advise re Internet/ medical advice. However our experience in hospital & since was not communicative or reassuring so I'd like to be forearmed.

@Mirabai yes I think you may be right. I really appreciate your advice (esp as it comes from your direct experience of recovery). Frustrating as it would be to stay at home (& I think this is a pivotal year for him) going away & really struggling would be worse.

op i’ve read your posts not the full thread. However i just wanted to say if he needs further hospital treatment, admissions or clinic appointments which could be possible. You could ask the hospital if they have a Learning disabilities nurse on site. They can often liase with doctors and nursing staff and help you advocate. You may also be able to create your own hospital passport for him if not, these are documents that all hospital staff should observe and can explain more of the things which affect your son, do and donts etc.

I understand how frustrating it is that staff aren’t always great with this and it’s wrong.NHS staff are now having to complete a mandatory training course in the name of a young man called Oliver who died due to lack of understanding of his autism and behaviour. Obviously some haven’t done it or just don’t care enough which is terrible.

Apologies if you are already aware of this.

So sorry to hear what your son has been through. I had a mild dose of Covid early in the pandemic, before vaccinations were available, followed by 6 weeks of post-viral fatigue. 18 months later I ended up in resus, with pneumonia and atrial fibrillation (AF). I'm a lot older than your son, but the point is the organ damage caused by Covid can take a long time to show itself. It was early days and we were all learning about the virus. It took the cardiologists several months to conclude that Covid was the cause.

I'm also in Scotland and have had to fight hard to be listened to and for appropriate treatment. The turning point was a private cardiology appointment with an AF specialist. No GP referral required. Turned out he shared his NHS office with my original q cardiologist, whose speciality was something completely different. Thankfully he agreed to hand over my case. It's been like night and day since: far fewer interventions and more appropriate meds. It's taken a few years to fully recover, but I'm happy to say I'm now fighting fit again, off all meds and in a place I never thought I'd see again.

It took two medical (NHS) friends to push me to go private. I wish I'd taken their advice sooner. Cost of two private appointments was £400 (Central Belt) - worth every penny. I appreciate not everyone has the money, though for health, I'd flog whatever to raise it.

Wishing your son all the very best going forward and huge praise to you for all you've managed to achieve for him so far.

On questions, as a patient not a Dr:

LVEF and its recovery is important. Measures via echo vary, but MRI is definitive.

Amount of LGE and location. If it is just inflammation it will resolve. Scars remain. An important issue is whether they cause arrhythmia. More likely to show on a 24 hour ecg.

Whether there is a pericardial effusion as this can cause ongoing pain.

I would also ask about protective medication to reduce the risk of fibrosis.

Also if he has had an autoimmune reaction (rheumatoid factor and ANA). Then any medication needed.

Get a follow up MRI booked in three or six months to be sure all inflammation is gone and a stress test, particularly if he does any sport.

Try to get copies of all tests/CD images so they can be viewed by a different set of Drs if needed.

His fatigue is most likely a post viral fatigue which can take a long time to improve and needs lots of rest. I would be making plans for a long slow recovery gap year so he can start uni with no health worries. He really needs to take it easy and not push himself too hard. My post viral fatigue took about 8 months with good days and bad days. Then one day I woke up and it had gone! If he starts to feel better sooner he can get a job, do charity work, preparatory reading for his degree and visit friends already at uni.

Glandular fever possibly.
GP can arrange a blood test,

OP, I’ve only read your posts, so apologise if this isn’t appropriate.

I’ve got long Covid and have been involved with this community. If I’m right, your son had Covid last year?

If this was my son, and I could afford it, I’d take him to see one of the cardiologists privately, probably in London, who have developed interest in the effects of Covid.

The long Covid community talks a lot about Dr Boon Lim and Dr Opel, but usually in the context of dysautonomia , so may not be the right people for you.

One way I’ve found the best doc to see is by looking for those who advise support organisations. For example, I had tummy problems. My GP wanted to refer me to a gastro who was a surgeon. I did my research and found the doc who advises the Inflammatory Bowel Society (that’s not the correct name!) as that’s more where my symptoms lay. Luckily for me he practised in my home town. Went to see him. Paid for colonoscopy and got my proper diagnosis.

Another time I was in an injury compensation situation with a damaged shoulder. Other side’s insurance company wanted me to be assessed by a knee specialist. No thanks, I said.

For my penny’s worth, going to uni in September is an absolute non starter.

good luck.

medianwbie.

You are a wonderful mom - not only you are strongly advocating for your son, you are researching every bit of information you can get your hands on.

As much as you are on the ball, you are not a doctor. And I say this as a mom with a son with a chronic health condition.

Your son has a diagnosis of acute myocarditis with the extra difficulty of a disability making difficulty to explain his symptoms. During his stay in hospital he was seen by several cardiologists (what I call the specialist public hospital "pool"), Public hospitals work with specialists consultants on rotation - it'd be great if their advice was recorded in the file for the next consultant, but more often than not, it doesn't happen. There are time constraints and once a diagnosis is made, they send you home. In Australia is with a letter to see the GP, I have no idea if this happens in Scotland.

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.

There is PASS in Scotland. Be worth contacting them for support- similar to Pals

I give this as an example only, no way a recommend. This doc was writing in the BMJ back in 2021 about myocarditis and covid/vacs. You want someone who’s interested and researching, leading the way.

https://www.heartspecialistconsultancy.com/medical-team/specialist-consultancy-areas