Getting asd child to comply with medical procedures

[InfinityGauntlet]

Just posting for advice and a bit of a hand hold really!
I have posted before, dd (9) has asd, spd and problems with her bowels too. Back in August she had another op where she was given Botox for anal fissures.
She’s been really bad with her bowels lately and has been refusing taking any of her medications or treatments, I am honestly so frustrated and at the end of my tether.
We have to go to hospital tomorrow where she’s getting another op to be manually evacuated and to get an Ng tube put down. I’m wondering if anyone has any advice on how I can help dd? Her consultant is worried dd will be pulling it out, and again not complying with the medial help she needs.
We do have some play sessions coming up next week, but I am so scared at how she will be tomorrow, I’m dreading it.

We have had this and indeed going through something similar tomorrow. The last time the consultant gave my son something similar to diazepam which made him woozy and helped with an IV line. Worked really well. Maybe you could ask for that as my sons 9 also and it’s allowed. Made the process go so much more smoothly.

Thanks @Lesley25, she does get a sedative before her general as she flips with the getting an iv line too, I think I’m really worried she tries to rip it out when she comes to!
Good luck to your son tomorrow too

My son does the same. But the nurses were all aware and bandaged it really well and as soon as he came too they made sure to take it out after 15 minutes, they had to leave it in for 15 incase he was sick. What I would say is take whatever you think she’s going to enjoy drinking and eating and give it to her straight as she comes too- buys you a couple of minutes and it’s one of those things they’ve got to make sure she’s done - eaten and drank something however small.
Good luck too xx

Have you tried social stories to explain what is going to happen?

Sadly she won’t be able to eat/drink when she comes round as she can’t eat with the medicine she needs through the Ng tube, it’s the tube I’m worrying about her ripping out as then we’re back to square one! Ahh these things are sent to try us eh.

@sirzy we haven’t actually done any social stories for quite some time now tbh! That’s such a good idea though, I’ll get her board back out and print some off before tomorrow, and hopefully will give her a better understanding, thanks.

Honestly I’ll be thinking of you and please update, sending a million positive vibes your way.
We will both be glad when tomorrow’s over!

Thanks @Lesley, positive vibes to you too! (Currently up with a worried dd - going to be a long day!)

How did your ds get on yesterday @lesley25?
We’re still in hospital, yesterday was awful tbh, but she’s trying to be brave and getting a bit more used to it today.

Yesterday was horrendous too. Our positive vibes must’ve got lost...!!
Today was bearable and we’ve just got home but aggression anger maybe pain is just through the roof.
Well done to your daughter, just getting through has got to be enough.
You can pick up the pieces when you get home.

Oh no, sorry you had a horrendous time too. Hope your ds is ok and his anger and pain have settled down now, must be so hard for them.
Don’t think we’re getting out until tomorrow at the earliest, I’ve never stayed in a ward so bad, at the end of my tether

Tomorrow is nearly here- just grit through it. Look after yourself with treats, this time tomorrow you’ll be home.
I hope your daughters not finding it too hard, try to keep positive, you’re doing this for better days ahead for her.
I hate wards too-Is there no way a room could be found? I ended up pacing up and down trying to find a room they could let us have but no luck for me either.
Everything will be easier when you get home so count down in your mind.

Thanks Lesley, still in here for now, it’s a kids hospital but they’re really struggling for room so I’ve been trying to share dds bed with her (not an easy feat!)
She has already punched me today, feel like the worst mum ever
How is your son doing today?

Our kids tend to take it out on us when they’re in pain, my son is no different. I have a feeling he’s battling an infection so we will have to go back in tomorrow morning to check, I’ve been bitten and smacked today. I know it sounds awful but I feel like I’m backing away emotionally from my ds I just can’t reconcile the constant aggression even though I know he must be in pain it’s hard for both us I guess to reconcile, but don’t feel like a lousy Mum- you’re present and doing the best you can under horrible circumstances. I hope you’re out tomorrow if that’s the best course for you. Being in hospital you’ve just got to believe they’re doing everything to make your daughters life better for all of you - horrible now, but ultimately you’ll get months of better health as a result of these days. Chin up, grab a box of miniature heroes and eat them in the toilet if you can!

My DS hates blood tests and he recently had to do some. What helped lessen his anxiety was for him to watch YouTube videos of “brave” children having their blood drawn. He watched this several times over a number of days, leading up to his blood test. I even downloaded a game on the IPad, where you can be a doctor.. and in this particular game for DS, take blood samples from his patients. He played this non stop.

I’m happy to say that it worked, He was still crying and I had to hold his arm, whilst he was having his blood test but it was a big improvement from when we had to stay in hospital for two days as DS refused to take a blood test, to the point of 5 doctors/nurses weren’t able to restrain him to take his bloods.

I wonder if you can show your DS YouTube clips of children having that particular operation ? That your DS is having. I would show this to him everyday leading up to the day.

Thank you notgiving