For refusing to give autistic DS a treatment that will distress him?

[Hospedia]

I'm not the poo troll. I'm a long time poster who has name changed.

DS is in hospital and meant to be going home today. The doctor this morning was happy that he's well enough to be discharged and can leave after he's had something to eat and drink and one last set of obs.

He has eaten, drank, and had the obs done but in this time the shift has changed and his new doctor wants him to poo before he leaves because he says DS is constipated.

DS is autistic and sensory-avoidant, he hates going to the toilet. He also has encopresis. He usually takes a daily dose of Movicol which helps keep things moving along and his regular pattern is every 2-3 days. He last went on Sunday morning and I'd expect him to next need to go either last night or at some point today, if he didn't go by tomorrow then I'd temporarily increase his Movicol until he does. DS isn't showing any of the signs that he usually does when he's avoiding going to the toilet. We have a routine at home where he sits on the toilet for 5-10 minutes in the morning and evening to see if he needs to go and he's kept this up, he says he doesn't need to go yet and I believe him.

This doctor is insisting that if he does not poo by noon then he needs an enema as he is "seriously constipated". I've refused on the grounds that he would find this distressing both to administer and the end result, it would upset him to the point of meltdown which is usually followed by a shutdown, and it would create problems going forward potentially undoing all the hard work he has done in following a toileting routine and taking his daily Movicol.

Doctor has taken the hump at my refusal, has been back to try persuade me, has said I should try persuade DS, and has now gone to discuss it with the nurses.

AIBU to insist that he does not have this treatment? His reason for being in hospital has nothing to do with his bowels.

Absolutely insist that he doesn't have this treatment. You know his bowel pattern and how to manage it. I'm autistic and was seriously indecently assaulted by a doctor when I was a teenager and the terrible memory has never left me.

Just stand up to them. The doctor probably doesn't know what autism even is 🙄

This doctor did his bloods when he was admitted and when he cried during it she asked if he was going to be a big boy or a cry baby

*he asked

Hello, fellow Movicol parent here.

In your position I would absolutely refuse an enema. It sounds like he’s still in his routine and with his sensory needs the invasive procedure could lead to further withholding and worsen any problem (as I’m sure you welll know).
Aside from the fact he hasn’t pooed to a ‘normal’ schedule (based on other people’s normal bowel habits that it) what proof does he have that your son is impacted? Have they done an X-ray?

An enema seems such a big reaction to a few days without shifting anything. If the Dr won’t budge I would ask for a less invasive treatment in the way of a stimulant such as sodium picosulphate to get things moving (which normally works in 6-12 hours in my experience).
This would help alleviate the Drs concerns but be far less distressing for your child.

I think the doctor definitely DOES know what autism is. But YANBU to refuse the treatment. However you may end up in a stand off where they don’t let you go home until he’s been.

You may need to dig out the NICE guidelines and ask a) what makes him think DS is constipated and b) what the NICE recommend treatment is for children who are constipated due to stool withholding? We have had similar issues with DD who is on the spectrum and I agree it could very well undo the hard work you have done. I expect the doctor will back down when you highlight that his plan of action is not evidence based or within the NICE guidelines.

@Hospedia

*he asked

I'd be bloody complaining about this alone...

Utter lack of empathy for your lad... On all counts...

He needs training on ASD and basic empathy/compassion...

Thank you for helping me with terms I can use, been up since 4am so my brain is a bit foggy! When he comes back I'll ask him where an enema sits on the treatment ladder, why he wants to jump to that without trying any of the intervening steps, and will also ask him what evidence he has for impaction and what the NICE guidelines are for diagnosing and treating it.

Ironically if they discharge us then DS is more likely to go as he's more comfortable on his home toilet than he is here.

The doctor THINKS he knows what autism is, but, trust me, he doesn't if this is how he's behaving.

The doctor is being unreasonable but only pooing every 2-3 days doesn't sound often. Most people go daily, not going daily may not result in impaction but can result in stretch bowel and reduced sensation of toilet need.

I usually find with doctors it helps to assume they do have your son's best interests at heart, even if they aren't as familiar with his specific needs as you are.

Sounds like Dr is stuck in their own frame of reference, and is therefore unable to imagine other’s realities away from their own experience.
Stick to your guns, and if Dr persists feel free to highlight what a damaging message ‘not crying’. I thought we were trying to improve mental health not deny it all together!

@DeepaBeesKit

The doctor is being unreasonable but only pooing every 2-3 days doesn't sound often. Most people go daily, not going daily may not result in impaction but can result in stretch bowel and reduced sensation of toilet need.

I usually find with doctors it helps to assume they do have your son's best interests at heart, even if they aren't as familiar with his specific needs as you are.

How do you know most people go daily? everyone is different

I agree with refusing an enema. I don't think any child should bd subjected to that torture unless in a life threatening situation.

Fuck that. Get the nurses on your side and I guarantee they'll fight the doctor off. Discharge him yourself, if necessary.

It’s within the normal for him so certainly out your foot down.

However, I would be talking to your normal dr moving forward Ds has chronic constipation and we have always been told to aim for going daily in order to keep things moving so long term a slight increase in movicol may help

Can you just leave anyway? I signed myself and newborn out of hospital against Dr's wishes. They just gave me a form to sign.

I wasn't being reckless by the way, baby and I were fine, I'd repeatedly asked for assistance with breastfeeding, been ignored, been missed for drugs after c section. I was better of going home and getting local help.

Another Movicol parent here! Obviously his bedside manner is appalling but I think it’s worth finding out if he thinks DS is impacted and on what grounds.

If he is, then it’s reasonable to want to tackle it, though as PPs have said, there are other things you can do.

Sending strength and solidarity.

Asked if he was going to be a cry baby FFS? Put in a complaint about that one PALS are very good IME. I wouldn't let him any where near my child. Please refuse, you know your child far better than he does.

YANBU. I'm an autistic adult with no bowel issues and I can think of few things more distressing from either a sensory issue or bodily autonomy standpoint than being given an enema. I shudder just thinking about it. Stand up for your son. You know his habits, you know this isn't any kind of medical emergency where benefit might outweigh harm.

I’ve have been on the children’s ward with an ill baby and after a night they discharged us home and we had to come back to the ward every day for a couple of hours whilst the treatment continued. Can they discharge your son to come back tomorrow afternoon? A bit of exercise and his own loo and he will hopefully go.

Discharge him. You can legally leave, no matter how much Dr know nothing may pretend otherwise. His treatment has finished. He is fit for discharge. You know his needs and this doctor can get stuffed, frankly.

Lovely nurse was happy to go with what the previous doctor said which was that he could go after he'd eaten, drank, and had a set of obs. It was written in his notes that this was the plan so she checked with the registrar and she agreed

I am so looking forward to DH taking over care while I have a shower and a decent sleep.

@Floundery

I have an ASC sensory avoidant DS and he would never poo again if I allowed a doctor to assault him in this way.

Please stand your ground. The doctor is a pig-ignorant arse. I usually accuse people of discrimination on disability grounds if they don’t fuck off the first time they’re told. Works a treat.

ASSAULT him?!?!? He's a Doctor for Christ's sake! Since when is medical treatment classed as 'assault?!' 🙄

OP, the Doctor knows what he's doing. I also have an autistic child but that doesn't suddenly give me a medical PHD. It's a shame he'll have a meltdown but some things are necessary. The doctor will not be just saying he's severely constipated for fun?