Child in a&e

[Ilikenewbedding]

DS 11, with ASD, not very verbal, woke up yesterday morning in a lot of pain. He was screaming so took him to a&e, and after 7 hours they sent him home with no diagnosis, but the pain had gone.
Took him straight back this morning as there's blood in his nappy and he's back to screaming in pain. Been 7 hours so far and they won't do anything until we get a urine sample. He withheld for hours until he managed to wriggle enough to remove the bag, and now they want to start all over again.
I genuinely think it's a uti but they won't give him anything for it until he pees for them and they test it. I showed them the bloody nappy but since the blood is on either side they said they don't think it's from his pee?! The pee itself was on either side too.
He's been non stop screaming, crying, lasing out and they seem to see nothing wrong with leaving him another 6-7 hours withholding his pee and having a huge meltdown.
Just to add, we've both had a total of 5 hours sleep in the past 48 hours so we're completely exhausted. I don't have anyone who can take over as OH is home with our other DC and no friends/family local who can help out.

Not sure why I'm even posting, maybe just a hand hold or anyone had similar 😔

Anyone?

Could you swap with OH? Unfortunately it sounds like they can't help you until he wees, and that will be a matter of time

Would they accept you taking him home with a sample pot to get some urine? I’m amazed that they cant test the urine in his nappy tbh.

I could swap but our other two also have additional needs and at the moment he only wants me.

They're taking it in his nappy via a bag attached to him but he doesn't like it so he's withholding.

Have they offered any pain relief?

Where are you in the hospital? On a ward? Room? Can you request a quiet area or room if available and have your DH drop of things to make him more comfortable?

When ds has been in hospital, also ASD, we take over a room a bit with his bedding, sensory toys, specials and anything that will calm him enough to be treated.

With babies they used to put cotton pads in the nappy and collect urine from that, would it be possible rather than a bag? Or would he go nappy free in a private area and you get ready to catch any output?

I think they need to culture the urine to make sure it's a UTI and not something else. I know the badge isn't the most comfortable way of collection however at least it's the lease invasive way. I guess they need to make sure he is not in retention and is in fact withholding by choice. Hopefully you both get sorted soon! Xx

Thanks everyone. Sorry, everything suddenly moved at once so I've only just had a chance to catch up.

So he finally went in the bag, they tested it and everything came back normal. Doctor came to speak to me and got him an appointment for an ultrasound on Tuesday as they now think he has kidney stones.

He's got plenty of pain relief and is currently relaxing in bed at home 🙂

Ohh they are very sore! Thankfully you've only got to wait 48 hours! Glad your both home and now relaxing

Glad you have been sorted. Maybe get a bag together in case he needs to go in again. I remember when my son with ASD was around six and needed eye drops in hospital. He was non verbal then and I had a mum preformance parenting her 2 year old ( what is that shape? A trapezoid? That’s right good girl!) and giving me filthy looks as ds rolled on the floor. Until someone had to hold him down for the drops. I came out in tears and a look that would freeze hell over from a side room. Another mum told me I was amazing and the others looked sheepish. So, I feel your pain about hospitals

A belated hand hold, poor lad and you must be exhausted. I’m glad there’s been progress, what a horrible time for you all.