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.

If a dedicated children's hospital can see him they MIGHT be better equipped to deal with the autism aspects. However those in Scotland may know specifics.
My local children's hospital is amazing and would have autism support specialist.

If he were to go to a different hospital for anything, how would he get there ?

Would he be travelling in an ambulance and thus still under the ' care of the NHS

or would you be driving him ?
if so, would he be considered ' discharged ' once he leaves this hospital ?

Sadly he’s 19 so a paediatric unit wouldn’t see him

Oh sorry I remembered him being 16 incorrectly

I didn't want to discharge him. I just wondered if they could send him up in an ambulance for a scan quicker there (prob doesn't 'work that way' anyway!) But I've just come back after an hours break with Dd. He's now in the high dependancy room. MUCH quieter & cooler. He seems so much calmer.
Diff Dr again said: Dx postviral myocardial plus LVSD. Said immune system is attacking heart (is this another dx again?). Plan: Cardiac MRI. Daily ultrasound. Daily bloods. Daily ECG. Bisopralol. Dapper glifozine. Paracetamol. Emla cream & oral sedation for bloods etc. I made him eat & drink a bit. He's asleep now. I had a quiet wee cry & they've brought me hot chocolate & biscuits. Made me cry again. Thank you everyone who's here x

Is dapper something deltaparin, if so it’s to prevent blood clots Or it could be something else completely.

sorry he didn’t get the mri. I agree stay where you are.

Sorry just seen your last post and the drug is something else completely.

How much is he drinking? How much is he peeing?

this is really important

Sounds good OP - or as good as can be expected in the circs.

Do they know what virus caused it? Has he had Covid recently or Epstein Barr?

I agree with this. Start keeping notes if you can.

@Mirabai I asked. Dr said: 'it's academic'. I'll ask the Cardiologist too.

Sending you a big hug OP.
Ask each day if any heart MRI slots have become available xx

Re fluids. They’ve told him not to drink too much because of fluid retention. He's interpreting that as: 'don't drink'. I'm going to ask all the staff to tell him to drink & keeping a note is good tip too thanks. I'm writing everything down. The Cardiologist looked a bit askance - he asked 'can I read that too?'. I said 'I'm taking notes to inform Ds' absent parent. Yes you're welcome to read them'. He did. Corrected some spellings. I didn't want to annoy him but if I don't write it down I'll get muddled as I'm quite tired. Ds having great sleep

Friday isn’t that far away and I would stay put to get mri done asap. It would take much longer as outpatient. Plus he is under their care so getting rest/support he needs. I know it feels like forever but in cardiac land it really isn’t long at all. Plus it means they can get his meds at correct dosages etc.
Glad he is in better room, time to rest and come to terms with things which will make upcoming mri easier- time to plan for it, talk about it etc etc.

I would ask the Cardiologist in am exactly how much fluid he would like on a daily basis. That will give your DS the ‘goal’ , then keep records of it

When I was in hospital the nurses recorded every ml I drank. Are they noting what he’s drinking as well as you?

Cardiologist looked a bit askance - he asked 'can I read that too?'. I said 'I'm taking notes to inform Ds' absent parent. Yes you're welcome to read them'. He did. Corrected some spellings.
How unbelievably rude. Corrected your spellings!
Has he got no idea at all of what it might be like for a relative trying to keep up with what's going on ?

Sorry ,I just feel so angry that you should be subjected to that . As if you don't have enough going on.

It’s not though.

I had myocarditis when I was 18. I had a chesty flu-like illness and then developed what doctors thought initially was pleurisy but turned out to be myocarditis. There was quite a clear trigger and progression from one to the other.

(If it helps - there were no MRIs back then - I didn’t have any kind of scan.)

Not that I'm aware of.

Can you ask the doctor (or ask the nurse if they can fine out) what the max fluid he can have in 24hrs? They usually have a ballpark figure in mind,especially if DS isn't drinking enough.
Lots of patients I see keep notes, or relatives do to pass on to other family or remind the patient if they're a bit muddled (I'm not a medic).

@medianewbie I think the writing is a good idea. My son spent a lot of time in hospital when young and I used to write everything down. One of the nurses noticed and said 'You should be a nurse!' I very much hope your DS gets the MRI soon and am glad he's somewhere calmer.

@Thisoldheartofmine I'm hoping possibly correcting spellings of drugs rather than general spellings?!

Just wishing you and your son best wishes.

Hello OP, I have been checking in on your thread all day. I’m sorry you are having such a worrying and uncertain time. A few years ago I spent almost 4 weeks in hospital with my DS who has severe autism, learning disability and epilepsy. It took a few days of watch/wait/ tests (with accompanying delays!) Medics don’t like to act “in the dark” and it’s so worrying having to wait. All I can tell you is once they were certain ( or as certain as they could be- and they were right in their diagnosis) they were magnificent in their care of our DS. I tell anyone in our position to do EXACTLY as you are doing- write everything down and let them know you are doing so- it shows that there is someone very strongly advocating for your son. Keeping your family in my prayers x

Also, I wouldn’t take it too much to heart that he corrected your spelling… I am assuming of course that he was just correcting the name of medication or tests et cetera. That’s OK because it helps you to make sure that your notes are an accurate record if you are going to be referring to them when speaking to other medics or your GP.

@Thisoldheartofmine - he said it fairly kindly but it was a weird moment.
Ds now awake & not doing so good panic wise again. Hopefully they'll give him something to help him sleep.