Ds - 19 - Myocarditis Update

[medianewbie]

Just an (interim?) update for those who were SO kind & supportive in July
when I was worried re Ds - we went to A&E & transpired he was in left ventricle Heart Failure from Myocarditis (& some Pericarditis too we later discovered)

He started to feel slightly better by Sept but then had a round of booster vaccs (Polio, Meninigitus etc plus winter flu & pneumococcal). Went downhill after.
Now his heart rate drops to 50 overnight but goes from 75 on waking to 100+ when he sits up in bed & often over 130 when he is 'up and about' (showering) He has lost over a stone in weight & continues to have chest pains. He has lost all confidence in leaving the house & is exhausted from any exertion (eg stairs)
NHS Consultant says he is 'no longer in heart failure' (provisional diagnosis)
but has scheduled a repeat gadolineum cMRI. This is now due this Monday.
Ds (Autistic) is very worried about it as 'it hurt so much last time'. I have now obtained some emla, & some Diazepam (a fight with GP). I know to give him paracetamol, keep his fluids high before & after & to keep him extra warm.

I hope that we will have some results before Christmas (it has to be sent out of county as no one here can 'read' them). Once we have this 2nd result I will go private as the Consultant we have seen appeared to query his ASD dx (NHS!)
& has referred him to Psych as he feels it is 'all anxiety based' (but 'no liklihood of Psych seeing him for at least 6m & no Cardiac rehab for this age group)
Local GP service does not offer Counselling (Scotland). Once I have the 2nd cMRI I will go privately to get him any help he needs as he has had a bad time.

Have you looked at POTs syndrome? This often affects autistic people.

Is he hypermobile by any chance?

Thats So hard for all of you to have to deal with. Myocarditis is scary, and not well understood generally - even by HCPs - when it is seen in children.

how old is your DS?

@T4phage - no formal dx for that but when he had his ASD assessment his Physio said that, if he'd been a little older she would have diagnosed Dyspraxia?

His heartrate goes down to high 40's / low 50's at 3am. When he wakes it's around 85 but as soon as he sits up it shoots right up (not for long though?)

He was previously found to have non epileptic 'seizures' due to Anxiety.
Two different NHS Consultants thought it was epilepsy & only conceded it wasn't after he had brain tests. It was at a point where he was being very badly bullied.

I think his current NHS Cardiac Consultant is going down the 'anxiety' route. I know that anxiety can mimic epilepsy & can affect heartbeat but some of this happens when he is asleep / barely awake & just sat up (no time to be anxious)
A lot of chest / left arm pain too.

@TitchyBiteroo He has just turned 20 (but looks about 30) Hospital therefore 'didn't believe' he was ASD & were askance at me being with him but he also took his teddy bear in as he goes nowhere without it so they started to realise..

Sorry to hear he’s gone backwards, @medianewbie. Fingers crossed it’ll be slightly less traumatic for him than last time.

No knowledge really OP but sounds very worrying for you all. Your poor ds having to go through this.

Not sure if you have Reddit, but there is a great Biohackers sub that has quite a lot of discussion on myocarditis if you search. You might find something helpful there around it and any helpful supplementation for recovery etc.

Sounds like you are just being fobbed off can you afford or do you have private medical cover?

How worrying and to say it's anxiety when it's clearly a physical issue is just not helpful.

@greenrollneck if Ds can tolerate the MRI on Mon we may have the results by Christmas. I will then contact the Spire afterwards to see if they can help him.
Last summer he went on an overseas trip with College for 3 weeks (hard for him re his ASD but he did it & I was hugely proud!) Now he's struggling to walk down stairs & his h/r goes up to 140 in the shower. He's terrified he's going to die.

Well he managed the repeat cMRI (with sedation). Results 'prob end Jan' now.

DS2 has currently had his ADHD meds stopped/on hold (not they were available anyway) until he has a cardiology appointment. He has a high heart rate with 140+ with the slightest exertion when off meds. Not at all anxious about it and doesn't even notice HR of 160 bpm! He also has ASD and a history of low bodily perception of pain etc.

Been waiting months off his meds (not ideal as he has just started a degree) but better safe than sorry. Considering going private but have no insurance and don't know where to go.

@PocketSand I'm so sorry to hear that. Your Ds sounds the opposite to mine re bodily awareness tho! Mine just bought a Fitbit as he was convinced his heart had stopped (really bad health anxiety after poor experience in hosp). This means he just checks it every 3 mins which isn't helping really- but it does show it drops to 45/50 around 3am then jumps to 130 if he gets up to pee in the night. I've no health ins. either (Carers allowance) but I've decided a £200 consultation at the Spire is worthwhile. My Ds is barely leaving the house he feels so ill. It's very worrying. I wish you luck getting to the bottom of it. My Ds has Aspergers as well as clinical anxiety but we were about to seek an ADHD assessment too before he went into heart failure.

Ask about POTs. I have the same symptoms and was diagnosed after a 7 day ecg plus a tilt test. They did this at the spire xx

An (other) UPDATE:

Ds had his MRI mid Nov.
Consutlant then went on hols. Asked for results, got a 'holding' email to say:
'other Consultant says: results show similar to previous, dx 'suggests Myo'.

Finally got letter with results on Mon. Ds actually has more 'inflammation/scarring' on heart than in July. His ejection fraction has reduced by 8% too (not enough to put him back in heart failure but still worse than on discharge in July)
NHS Consultant (back from hols) 'is not sure if this is result of initial insult or continued issue'. Suggests 'watchful waiting' & 3rd MRI in Feb (no diff meds)

I got a shortnotice appt at Spire. Consultant there said coudln't comment much on Myo as no 'hard copy' of scan & did I realise that the 1st two MRI's had been read in different health boards using differnt protocols so 'very hard to compare'.
He said that he was surprised Ds had not been given Colchicine in July to reduce inflammation & that 1.25mg Bisopralol was 'effectively a placebo'.

He suggested we take up the offer of the MRI & 'push for answers'.

He said: 'likely Covid, Long Covid, heart Failure, Myo, POTS'.
Could have been rumbling since C-jab no way of knowing but Do NOT have any more Covid jabs in the future in case you had an 'over-reaction' to prev jabs.

He also said that DS has POTS. Handwritten letter says; 'probable POTS, as no tilt table test conducted but obvious from examination'. Has told us to stop the Bisopralol & start Ivabridine. Tried to make appt at GP: 'nothing until Jan'.

@Hazelmaybe can I ask what advice you got for PoTS plesae? we were running out of time & Spire just said take meds, try not to stay in bed too much.

If they agree along the line (sorry I can't find previous posts) that he has had myocarditis, then any part of his heart could be scarred and could show up on MRI. However if the electrical conducting fibres are damaged, it might not be readily visible (present in particular regions), depends on who is looking at it and what they are looking for. This is something to rule out, has it been mentioned? POTS still has to have an origin. If he can't get up the stairs, yet his heart rate can rise to 140 bpm inappropriately, that is worth investigating. It does sound like you are being fobbed off because he is young, maybe because of his autism in terms of how he is describing things? Just adding a thought from personal experience, nothing more; I feel sorry for him and I hope you get more specific answers.