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.

How is he doing in himself?

I was thinking of you earlier today and betting to myself that discharge would be suddenly announced by staff today.
Nothing wrong with that (hopefully) it's just the lack of communication and the sense( justified or not ) that there is no joined up thinking and planning.😒

Very tired. Fairly pale. Sore chest: sore for 15 secs stitch-type feeling.

Hi @Thisoldheartofmine thanks for input. Yes, it might be ok, but I don't have total confidence in them. I was startled that yesterday it was 'use commode as can't take telemetry off to walk 10 ft to loo & today its home & probably fine on plane on Weds'?
I note they are suddenly VERY busy too

Link to update thread as OP wasnt sure how to

https://www.mumsnet.com/talk/_chat/5112565-ds-19-myocarditis-32k-tryponin-mri-send-home

Thinking of you OP

Absolutely use what you have written here as notes to send to PALS.
You need to let them know that you advised staff that DS has ASD. Explain how you feel that despite you explaining that DS is unable to advocate for himself due to his disability, you have been treated like a neurotic, overly-invested mother, and he has been treated by many HCPs as though they have the expectation that he is an adult now and it’s time to “suck it up.”
Let them know that from the very beginning it has been difficult to receive information from staff and you have found most of them to be either far too busy to answer direct questions about your son’s current treatment plan, or dismissive, uncaring and utterly disinterested in hearing about your DS’s disability, which has had the potential to create an physically and psychologically unsafe environment for your DS as well as staff.

Discuss how this has affected his ability to be accurately assessed and potentially receive treatment in a timely manner. (Also mention how empathetic and caring HCP’s helpful ideas were shut down by hostile specialist which in turn cancelled MRI assessment for Xth time, potentially leading to further damgage to DS’s heart.) Explain that you do not want you DS discharged home until you have a clear understanding of the damage to his heart. You have had conflicting information from the specialists he has seen and he has not yet had the MRI he has been referred for x no of times.

I wouldn’t be surprised if he were moved into the nearest single room/better-accomodated hospital, etc. He really needs an MRI. You need to know how damaged his heart is and what his ejection fraction is before he leaves the hospital.
If you have any questions, don’t hesitate to PM me. I’m not an expert. I am a nurse (different field) and a heart patient. I also live in another country, so don’t work within the NHS. I have much empathy for what you are going through. So, so much in one go.

Just an update here in case anyone checks this thread.

Ds was discharged yesterday.
I wasn't happy about that (I asked for it to be recorded on notes: who knows). He has a Discharge letter which describes his Dx as 'probable acute Myocarditus with LVSD'. His Tryponin level has dropped to 156. He has raised cholesterol (history of familial hypercholesterolaemia).

Plan is to 'wait for MRI results & review'
MRI results 'will take approx 2 weeks'.

He's to take Dapagliflozin 20mg & Bisopralol 1 25mg ongoing atm.

No advice re exercise etc but afaiac he's just to cheerfully potter around a bit whilst we wait for MRI all clear.

Letter given to me re cancellation of upcoming holiday (copy GP) 'we think flight & staying in hot climate may be a challenge to his heart condition'

Our experience was mixed. But mostly his needs as an Autistic adult were ignored. One particular incident with 1st cannulation attempt was shocking.
(The Registrar came to see us, bearing hot chocolate, to apologise which was nice until it was clear main motivation was to ensure I didn't make Complaint)

No Pals / Martha Law in Scotland.
I currently have a live formal complaint with another dept (I'm disabled & they cancelled my surgery but won't go over scans & explain why - the complaints process would make you weep) so
I'm reluctant to start another but 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'd like to say a MASSIVE THANK YOU to everyone who commented on this & my previous thread. I'd have survived it without MN but it would've been even tougher & I would have been in a less good state to support Ds. So, you have not only helped me enormously, you've helped my Ds too. THANK YOU all xxx

Gosh @medianewbie what an ordeal! I’m happy you’re all home but I agree it’s a worry to be let out.

just on the exercise- please do not let your son exercise. When he feels well again and all pain has gone and he doesn’t need pain relief then start gentle walks. It’s really dangerous to exercise with an inflamed heart. Honestly mine took 9 months to settle so please prepare him for needing to rest for a long time. I also had long Covid so my experience was different but the heart pain lasted easily 9 months after myocarditis. I have a friend who had pericarditis (similar) and it was 3 months for her so it’s not always as long as I was. Obviously await MRI results and see what they say too.

Glad that he’ll be more comfortable at home, but don’t hesitate to take him back immediately if you are even slightly concerned.

keep us updated how he is please.

Yes please do keep us updated, I’ve been following and thinking about you all and sending all my best wishes and hugs ❤️💐

Hugs to you!! I'm praying for a good MRI result for your DS!
I'm so sorry you were both treated so appallingly xx

Hoping for good news also x

any results? :o

Hi @countrysidelife2024 hoping to have MRI results end of next week? He's due to start Uni 7th Sept & room paying in full next Fri so hoping for info before then although he's still extremely tired & sore chest anyway.

@medianewbie I have been popping in for news since you guys left hospital. I do hope DS feels better asap. Please let us know the news when you have it. Hope you managed yo find time to complete the divorce as well. Can imagine how important that must have been in the midst of everything. I have been thinking of you.

:( I do hope he gets better how horrible

@medianewbie Thank you for the update. I was hoping to see one and kept checking. It seems to take so long to get results these days.
I hope your DS starts feeling stronger soon, but don't let him overdo it when he does. He doesn't need to overwork his heart.

Both of you stay strong and know you have a lot of people pulling for you in so many ways!

I’m concerned he still has a sore chest. If he is still not picking up, don’t hesitate to take him back to (bigger) hospital.

Letter arrived this am:

'Your Mother has been in contact asking about follow up plans.
I'd like to let you know your MRI scan has been reported & the result was quite reassuring. Your heart function has returned to normal & there are only very minor post inflammatory changes in the ventricle. I think this means you have a good prognosis for the future.
I'll arrange an appointment in the next few weeks in my clinic to make sure things are going well. If you have any recurrance of symptoms please contact your GP'. best wishes. X

That is good news but pretty vague ?

Can anyone who's been following this with me give an opinion?
I appreciate it is NOT medical & will not rely on it as such.
I just feel really alone. Burst into tears of both relief (& bit worried re vagueness)
I called the BHF who said it was clear that the Hospital have no follow up plan & that GP would gate keep now. They said it was reasonable to ask what was meant by 'minor post inflammatory changes in ventricle' but they can't comment without more information (of course, but more info is exactly what we dont' have). Meantime, he continues to have some central chest pains.

Hi OP, I have been following your scary events, so very frightening and I’m glad your DS is on the mend.

With this latest update, it is a bit ambiguous and I think a call to your/Ds GP is warranted. Explain you are not reassured and would like some clarification and explanation as to what you should/shouldn’t be worried about.

If you’re still not happy consider a private appointment with someone who will take the time to reassure you and put any follow ups in place to keep an eye on your son and make you feel better.

Finally once you are reassured about your son’s recovery I would look at some counselling for yourself. A friend was in a similar position last year with her DS suddenly becoming ill and the doctor treating him said “if he lasts the night he should recover”. She was later diagnosed with PTSD and really needed help coping with it. Not saying that will happen but just warning you that you have had a terrifying time and it may hit you when later.

God bless and sending love to you and your family x

Op I have had it (two days after MRNA vax), no virus detected. The acute phase was over fast but some inflammation lingered for two years. It takes a long time to get over. It isn’t like an injured knee that can be strapped up for complete rest. It is also a major trauma to process. A lot of people who had it post vaccination (I think also post Covid, but check) also had an autoimmune reaction. Worth asking to have rheumatoid factor and ANA screened. A simple blood test, but takes a while.

Best wishes and great news the outcome shows positive changes.

Knowing what I know now, even a mild case is serious for the individual and isn’t something like flu you get over with a week of rest. Getting illnesses over the winter will be scary until it is clear how his body reacts. Is there an option to stay home for a year and do some online study/work.

On the MRI, ask for a copy on CD in case you have follow up elsewhere.

it is really important to have another MRI to be sure the inflammation is gone.

post inflammatory changes probably mean LGE. This can resolve as the inflammation goes down. if it does not there can be some mild scarring (diffuse, not the heavy scars seen after a heart attack). Push for a 24 hour monitor and get it repeated in a few months and again in the future. It should be fine, but be proactive. Also ask if he needs any protective medication. It could be worth speaking to a cardiologist for this.

Been following this from the beginning OP. Im glad you have received the letter from GP, but agree it is somewhat vague and you are still not getting any answers. Could you contact your GP surgery and ask for a face to face appointment sooner to discuss in more depth what they have put in the letter? (In layman's terms as well!). Sorry you are no further forward with this. Hope you get some answers soon.

This sounds similar to how I was left after myocarditis. My scan also still showed mild inflammation and some mild scarring and that was 6 months after it. It can linger. Truthfully I had ongoing chest pain for almost 2 years but now (4.5 years on) it has gone.

if you can afford it I’d pay for a private cardiologist appointment (approx £300) I did that and it was helpful to understand my result and prognosis.

a long while after I was given a ‘stress test’ which I was ok at but I had a lot of ectopic beats etc and they couldn’t explain it.

Your son is young but this is unfortunately seemingly very common with Covid and also with the vaccine, and other virus’s too.

My advise having had it is absolutely make him rest for some time until all pain is gone, then only gentle stuff (walks etc) and usual life and only go back to exercise slowly and gently to ‘test’ it. I think if he can have a year out I’d consider it. He will likely recover faster than an older person but I don’t think it will be a week. More likely months unfortunately from all I’ve read and seen.i now work with people with post / long covid stuff and you wouldn’t believe how many have had myocarditis.