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.

@IfItWereMe yes it was the technical stuff :)

Think you'd be better in the 'rural' hospital (think i know which one ...and if im right theb its a good hospital!). Going to ghe city just means they are more people and more accidents and bigger waiting times.
The main thing to remember is he's being looked after 24/7. They are highly trained and deal with this sort of thing every day, every year and know what he needs. If anything did happen, you've got the best people there to help him. He's in the right place.

Hope you're OK OP. I've been thinking about you both today. I really hope DS gets better soon. He must be feeling really overwhelmed, bless him.

I too would opt to stay in the smaller rural hospital if I were you. The city hospitals are likely rammed in comparison which will mean busier doctors and (even) longer waits.

Yes I definitely didn't mean to change hospital (just a scan elsewhere) but actually Ds couldn't cope either anymore strain / change anyway)
He's cried a lot this evening (stopped masking so it all came flooding out).

Hi @medianewbie
Just want to say what a brilliant job you’re doing in very stressful circumstances.

My eldest is autistic, and has to have cannulas for epilepsy seizures when they are bad. He has proper panic attacks when they come near him, which I completely get as I am very much scared of them too. I had to have one when I was in labour with him and I fainted.

Thinking of you and your son.

@MegsNaiceJam THANK YOU for your kind words. I'm sorry your son suffers Epilepsy & has to be cannulated. (Ds has non epileptic 'seizure' disorder - his panic attacks resemble an epileptic seizure - but its purely stress). Having been through a major attack earlier he then had a rough evening as all the pent up stress of the Day came out (all over me) Its bloody hard. At least the Consultant saw, so knows what we (Ds included) are trying to cope with. I hope things go well for you and your son x

@medianewbie what an incredible mum you are xx sending hugs I hope DS is doing okay. My DS is 17 and “high functioning” autistic- it must be really difficult for you dealing with his anxiety on top of this health scare, I just wanted to let you know you’re doing amazing and I’m sending you and DS (and DD) positive thoughts and wishes 💐💐

Been silently following. Poor wee sweetheart although it's a blessing it all came out in front of the consultant. So glad he's in a quieter room. I don't have any advice but just wanted to commend you, you're doing amazing 💪 ♥

@TruthThatsHardAsSteel Thanks x

@TruthThatsHardAsSteel - just typed a long reply & lost it so, in short, yes, 'high functioning' is often anything but & certainly unpredictable. Possibly because he dropped the 'mask' (so I got full presentation of his anxiety,) he finally settled and has had 7 hours sleep. And 2 hot chocolates & a banana for midnight snack too. Well pleased :)

Sorry, that 2nd post was for you @NotaCoolMum. (He's slept, I've not!)

He's going to be enormously unimpressed when he realises there's only a commode (poor bugger) but it makes it easier for them to assess his 'output' if necessary.

Bless him. What a journey for him 🥺 and for you too 😮

I was in hospital with someone who had to restrict fluids because of a similar situation. They were provided a set amount they could drink over 24 hours.

Your cardiac function affects your kidney function. This is why it is really important to establish if OP’s DS is retaining fluid or not. I have seen elderly cardiac patients on fluid restriction. I do think a quiet word to the nursing staff about your DS’s ASD and anxiety is a good idea. The more information they have about this - including medications he may be taking, the better… They may be able to give him low-dose sedation for more invasive procedures like cannulation - or topical anaesthesia (Emla). (Which is not 100% successful for patients who are frightened imo.)

I've established ideal fluids - max 2l /day. His blood pressure was (low?) due to dehydration earlier so they're talking of a drip. This has frightened him into starting drinking & I've made a chart for him. Different Cardiologist came round this am. Cancelled today's Ultrasound & CRT scans (which Ds was geared up for). Said wanted to wait for results of this am's bloods (taken quickly & painlessly by a lovely phlebotomist) as Triponen was 'a bit higher'. I asked him for figure & he said: ' a bit higher' so I said: 'the number, please?'. I don't want to be rude/make enemies but I want to have the info. It's now 5,700.

DH who is autistic struggles with cannulas and recently had an MRI too, he had a panic attack during his the first time so this was a second attempt.

See if the nursing staff can get some numbing cream from a children's ward area (if there is one) to use on all the areas they may want to attempt cannulation on Friday before the MRI (ametop, emla or LMX cream are all names of numbing cream).

Make sure they tell you his daily oral fluid intake maximum and then split it up into 150ml cups per day and explain that to him so he knows he can drink and it is easier for him to understand in cups per day. He needs to drink otherwise they will find it hard to find a vein to cannulate on Friday.

I was allowed into DH's MRI the second time and could sit and hold his feet whilst he was inside. If you can't because of excluding factors such as metal work or a pacemaker ask if a member of staff can go in with him. Also DH needed silicone ear plugs second time around underneath the ear defenders to block the noise of the machine more. It was not easy but he managed to get through it.

Also he could pee into urinal bottles not a commode if he prefers that to measure his urine output.

@medianewbie hurrah for phlebotomist !! But I'm so sorry for cancellations , postponements.
My relative with PTSD and huge anxiety was found by visiting partner with all leads disconnected (by himself ) manically gathering his belongings. He'd been told in the morning of a proposed move later that day and he'd not been advised of change of plan.
I understand how these things happen and after a while you learn to take every proposal and plan with a pinch of salt.
But by golly it's hard.
I take my hat off to you, how lucky your children are to have you.

OP - maybe worth asking if anxiety can cause an increase in troponin levels?

@Choconuttolata and @Fraaahnces fortunately OP reports that EMLA and oral sedation for cannula etc is to be offered.
@Fraaahnces I think this is a silly question but do you know whether liquid administered by drip would rehydrate without the retention problem?

he could pee into urinal bottles not a commode if he prefers that to measure his urine output.
Oh , excellent point !

That is a very good question.

I wouldn’t say anything about the anxiety because if it’s anything like here, another doctor will come around, cancel all tests and say it’s anxiety and send him home to save money.

Keep writing everything down!! You are doing great.

Yes this is my concern. He's 19 & whilst I'm his Carer for DWP purposes I don't have (power of attorney?) or anything so I guess no one could stop him if he walked out. Fortunately he seems much less stressed after a good sleep. Better able to cope with the inevitable vicissitudes of any hospital stay.

The anxiety may be a contributor (or even rhe cause) of the trytopin levels but its not related to the left ventricle problems so I'm not highlighting it.