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.

Ultimately, OP, you are the parent and if you do not consent there is nothing he can do.
If you could tell the Dr what the chain of events would be after administering the enema, then ask him what part of that fits in with 'first, do no harm'. (Which I believe is quite important to doctors)
Just because he wants to tick a box without actually thinking about the patient as a whole....bad practice.

I was agreeing with you and vehemently disagreeing with the PP (whose post was unable to be quoted directly).

@Hospedia you’re an awesome mum. Thank you for advocating, not just for your ds, but because every time we stand our ground we gain another inch of acceptance for our dc.

Ask for Sodium Pico Sulphate.

I thought the ‘Doctors are omnipotent and always know best’ attitude was slowly disappearing. Sadly it would appear not, if some of the comments on this thread are anything to go by. They are not God, and they don’t always know best.

@Floundery

Sorry *@Comefromaway* I thought you'd confused me with Dr Mengele a PP.

My post was rushed as I'm at work and I was probably not quite as clear as I could haver been.

Thanks to Paula McGowan training in autism is now mandatory for doctors and nurses, lets hope improvements are made soon

www.olivermcgowan.org/about_us

Well done OP for standing up for your kid. As always the only people in these situations advocating for our asd children are us the parents! Doctors need to treat the ‘whole’ person with dignity and respect and not just the symptom.

My son with significant cerebral palsy has issues with constipation at times but regardless if he went daily or weekly doesn't negate the fact that doctor has no business around children! As a RN and mom of a 21-year old I would refuse that enema and want to be discharged to get away from that quack. I have dealt with pediatric residents, attending and fellows and have had to advocate for my son all his life-I also respect doctors who have the fortitude to push back and give me the reasoning for it. I once threw a resident out of my son's room for insisting that a girl named Samantha was in the private room my son was in when she refused to think independently that her patient was transferred, discharged or expired. Yeah she got an earful but I made it clear she was never going to touch my child. Stand your ground.

If the dr believes he is ‘seriously constipated’ then he is right to advise him to stay in, otherwise your son could be at risk of a perforated bowel and at least a lot of discomfort. Do you know what he based that on? Have they not documented that he passed stool on Sunday? Did he examine him? Has he had an X-ray? If he is potentially dangerously constipated then yes it might be a case of doing what’s necessary. If not then yes you’re right to advocate for your son, and you’ve got the wiggle room to take him home where things are likely to be more effective!
I agree with pp that if possible I’d try and review the regular meds so he’s going more than every 2/3 days usually.

I'm mum to a congenital Rubella syndrome child.
And after reading this thread I'd just like to say to the mothers of
autistic children and the the autistic adult[s] on here that you're bloody amazing and inspirational.

I’m glad that the original plan was followed! I honestly do believe that some doctors really don’t have much of an understanding of autism. I remember having a similar discussion (minus the enema) with a doctor about my then three year old autistic son needing to produce a wee sample. It was two in the morning, he was so tired he couldn’t stay awake, non verbal at that point and not toilet trained. The doctor could not understand why he couldn’t understand ‘sit on the potty and wee’. All the while ds was getting more and more stressed about wanting to sleep. In the end I discharged him against medical advice and the doctor informed my health visitor who understood ds’s needs and didn’t bat an eyelid. It was not one of my favourite nights I’ve lived!
I hope your ds is home and feeling better!

Doctors do not have a PhD in medicine!
Stand strong OP you are doing the right thing.

Hospedia

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

That’s not acceptable. The paediatricians I know would be horrified by this.

I’m glad you are able to go home. It wasn’t ok for the doctor to try and insist on the procedure. If your DS was at immediate risk then fine but letting him go home and monitor it was the clear option. If he doesn’t go in the next day then may be you can reconsider.

When you feel up to it, if you can, it would be really helpful for you to flag this doctors attitude up. The hospital should have a PALS department who listen to and understand patient feedback to help inform services.

Additionally it might be helpful to creat a kind of ‘passport’ for your DS that details what’s helpful and unhelpful for him in terms of hospital procedures so you don’t have to keep educating staff as to his needs.

There should also be play specialists available to help him to cope with procedures too.

Well done for advocating for him!