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.

Good luck OP. Definitely make sure the MRI is done. The MRI is really important for getting definitive answers and also having a baseline to check against in a few months. I would also request a follow up MRI to be sure all traces of myocarditis is gone, before he returns to activities. Exercising with inflammation is apparently dangerous, so the cardiologist will probably advise a period of rest.

I had myocarditis, after a Covid vaccine, and the acute phase with very high troponin was quickly over, but inflammation remained for a long time. Troponin should be undetectable, so if it is still detectable but under the cut-off (probably 14 pg/ml) in follow up appointments it is worth pushing for further investigation. It can rise slightly with non medical reasons (running a marathon, etc), but the cardiologist treating me said ongoing troponin release was a red flag that is often missed when it stays under the cut-off.

Very good news the troponin is falling.

Just a thought for your daughter at home - it might help her feel involved?

Could she create a ‘one page profile’ for your son that supports his personal care needs at the hospital, it can be used to introduce new medical staff to him? If this isn’t appropriate for her then please ignore the suggestion.

Just I have neurodiversity and part of the way I like to help and support when I’m stressed is to be actively helpful and staying at home out the way might be hard.

Ideas the profile could say are things like

1. my comforter is a teddy called X

1. I like to know exactly what the steps are when having my bloods taken - or I prefer to be distracted by discussing something else during a blood draw

1. when stressed, I need to be reminded to eat and drink

Hopefully it’s all viral and any ventricle issues are temporary and due to inflammation. Scary time though.

@Clasplas thank you this is helpful. New Cardiologist this am interested in when Ds last had a covid vaccine. I explained (again) that he had a really bad dose of covid last Nov & has had exhaustion & on & off stitch type pain at rest in his chest area (refused GP until acute episode with vomiting at weekend). I'd like to know more & have some consistency (he doesn't have a named Cardiologist/ Dr / nurse, I've not been told what meds he's on, not told blood results & tests & timings change)
I said I was 'not happy' about MRI further pushback (Dr? no namebadge) said: 'you seem a bit anxious Mum. That wont be good for Ds'. In front of him. Also useless exH 'Dad' turned up so all HCPs speaking to him now. Grrr.
Sorry for vent. Thanks for info. I've had 1 Dr tell me to continue with holiday plans next week (plane to Malta)1 say, no, 1 say: not sure. They say 'stay in for now' yet his telemetry is off for 'ages' last night after trip to loo & no one noticed (I'd nipped home for a few hours sleep so I'd be more use to him today for scan-not-happening-now.
The Dr earlier said Ds could have anaesthetic support re cannula + scan. Anaesthetist just came along & said 'not in this Hospital he can't, let's do a practice cannula today'. Ds refused.
He's now more stressed than he was.
Sorry for stream of consciousness ...

Jesus so much bureaucracy it's awful. I think you need to educate yourself if possible and then tell them what you want. And any man that talked to me like that would get put back in his place.

Comment from the Dr about you being anxious sounds really patronising. Of course you're very worried! I feel like an advantage of being in a bigger hospital would be that they would probably be better equipped to deal with your DS's additional needs. But I understand why it could be very tricky to transfer. Best wishes to you OP and I hope things are resolved very soon.

What Doctors mean is “Don’t question me”

so I push it back on them - how come X doctor came to a different decision? Obviously I would prefer investigations be as thorough as possible, what results has come to light since X reviewed?

often the conversation becomes interesting and less confrontational- they either agree to be “sure” or they explain x result, or y time passing means xyz.

always something to have up your sleeve. Doctors don’t mind telling you that your opinions are unimportant to them - it’s harder to dismiss colleagues.

@ElecticBetty thanks thats good advice. Two probs are: from absolutely no asd awareness (I even had to argue to stay with him) they're now going 'overboard' - no bloods to test Tryponin today (3.2k yesterday) as 'he doesn't like needles Mum'. Initially talked to him only. Now talking to me but have decided what's best for the asd person. Not listening to him or me re that. eg they've decided he'll have probs with the scanner. He won't. He had an MRI aged 9. Perfectly ok. Not worried now. But they're now saying 'maybe we don't use the contrast (no need for needles). But that will result in a less precise scan, which is 2nd best, esp after 3 days talking it to death anyway.
We've asked for: some oral sedation, some emla numbing cream, a local & then site the cannula. A scan slot is booked for 2pm so well before that.
They're going to have a meeting about it at 9am. He needs a plan that doesn't change. And to get on with a (contrast) scan.

www.england.nhs.uk/learning-disabilities/improving-health/reasonable-adjustments/. Might be useful. He should not get less good care because of his asd. Stand firm you're doing a great job and hope he's better soon

I know that says learning disabilities but equality act covers all

Can they bandage the cannula site afterwards so at least he does not have the stress of looking at it and will hopefully be less likely to dislodge it. Drinking something sweet before (if allowed) may make him less likely to feel woozy. Make sure he doesn't have a sweet or anything like that in his mouth while they do it, in case it is accidentally swallowed.

If you do have a consultant willing to investigate the cause that would be useful. For future treatment plans and to avoid the trigger in the future.A cardiologist treating me said they have seen many cases where there was a reaction after the first vaccination, but it wasn't clear enough to be recognised by the patient as cardiac. Unless it is bad enough to land a person in hospital it can be fairly unclear - occasional chest pains, indigestion like feeling, on-off shortness of breath or exercise intolerance that could easily be passed off as illness over the winter, palpitations that may or may not be felt. Myocarditis was then formally diagnosed after further vaccines or illness/Covid. In the post-vax cases apparently auto-immune responses have been seen, this was also the case for me. Rheumatoid factor and ANA were the initial blood tests. I am not an anti-vaxxer at all, was sad I could not get full protection. But I was injured and hiding that doesn't help anyone.

Best wishes and get through the next days, step by step. Troponin falling is the first big hurdle and he has cleared that.

I'm so glad he's improving.

Oh good. You must be exhausted.
I read this article last week in reference to my daughter. Might be useful

https://autisticgirlsnetwork.org/needle-phobia-autism-and-coping-with-blood-tests-and-vaccinations/

Might be worth asking the nurses if the building has play therapists. I don’t mean to infantilise your son but they are especially skilled at dealing with fear/sensory issues etc. If your son has learning difficulties etc and if the hospital has children’s wards it might be that you could utilise their skills.

Mine was only small at the time but he went from being incapable of having bloods taken (and he was in Resus for suspected meningitis so they were trying very fucking hard) to actually not noticing anything had happened. I am genuinely in awe of them.

So. We've spent half the ruddy day talking about the cannulation for the twice-cancelled-already scan today. Been told he can have sedation 1st (by person with no badge who is in charge) Then been told no by anaesthetist as not right equipmentin this Hospital.
But plan was to try: oral sedation, then emla, then local, then cannula. Either this afternoon (recommended) or in morning. I suggested now (as I think they're looking to cancel his slot as they think he will waste a 2nd slot)
Ds said in morning.

Then a nice junior Dr took time with him. Went through the whole cannula procedure. He applied a practice cannula to his own arm. Felt happy to go ahead. Dr said anaesthetist in ward. Could do cannula now as they'd be on call in morning so it would be more 'hit & miss'. Ds agreed to do it now. Calm & 'go for it' mode. Consultant then said (via Dr) 'no, as risk of infection' (surely he knew that earlier when suggested today?). Ds totally deflated.
Dr said this Consultant isn't our named one - we have one! unfortunately he's the guy we met yesterday who was a total arse to Ds. 'Didn't take Qu's'.
Junior Dr said arse l guy 'will decide about Scan in morning' as might not want to book slotting Ds can't cope with cannula'. FFS!! Sorry. I'm tired.

Bless you. I'm terrible with cannulas, bad veins and needle phobia. I feel for your son.

I'm so , so sorry and angry on your behalf. Can you print that last summary off and give it to a patient representative at the hospital ? English hospitals have PALs , is there an equivalent in Scotland?

Oh my god I’d be raging!

I’d write an email to PALS. Chat GPT will knock you up a nice one quickly along the lines of

my son has autism, this is a condition that means he needs to be treated with clarity, patience and awareness of difficulties with communication and sensory needs. It does not mean that he is incapable of having typical investigations or medications. Merely his ASC means that there needs to be a considered approach when doing so. Flip flopping around is actively harmful.

and then nicely, end it with a subtle warning that you’ll bloody sue otherwise.

Go to PALS. Honestly.

You can buy Emla cream at the pharmacy - not that you should have to but it saves on time when one person says yes & another says no.

Nightmare. Keep strong.
None of this is surprising to me, they hope you will get sick of it and leave. Don’t let them win.

Bless you both! When arsey Dr's disregard plans made by a previous Dr, I would always say, OK, Dr A wanted to xyz. What is it that makes you feel differently? Make sure he knows he has to explain himself and be accountable! Twat. I hate hospitals, I've never been and not seen at least one unnecessary show of arrogance 💐

I just want to say thank you for this, as my Autistic DD is currently going through a severe needle phobia phase after a bad experience. I think the medical community really need to take note of how much Autism affects individuals (especially children)

OP, I'd also like to say well done for how you've handled this so far. As an Autistic woman with an Autistic DD, I get sick of being called an Anxious Mum etc. We know our kids best.

The Troponin numbers going down is brilliant. Fingers crossed he's on the mend.

Just want to add one thing. DD and I both have Hypermobile EDS. It often presents alongside Autism. If undiagnosed, then it's possible to have unknown heart issues (I have tricuspid valve regurgitation, DD has mitral valve regurgitation and my sister had ventricular septal defects) All of these mean heart infections are more common.

I hope that the eventual MRI helps with your DS' full and proper diagnosis, treatment and also lead to a full recovery. My sister was entirely non verbal and we thought she just had flu. She had Endocarditis. You got your DS to hospital quickly, and that's the main thing. I'm sorry you very had conflicting advice and information from doctors. Never back down.

Much love to you, your DS and your DD. I have an ex who would be as much of a chocolate fireguard as yours, so my sympathies there also.

Another option is the freezing spray… my ds ( asd/adhd/cardiac) is allergic to Elma cream so we always used the freezing spray.. he much preferred it… now he doesn’t use anything but the freezing spray helped him for a good few years

Hmm. I'm going to start an update thread. MRI due this afternoon (IF we can achieve the cannula). But 'results take 2 weeks' (Registrar says only scan interpreter is off sick, Consultant says scans are sent to nearest big city)

Meanwhile they want to take him off telemetry & send him home. Today.