DS11 and toileting troubles. When to be worried?

[TooEnabledToCare]

DS is 11 and at coming to the end of primary. He is diagnosed ADHD and ASD.

Over the past year we have been having issues with pee; his pants often smell very strongly of urine where he clearly has not shaken or wiped after the toilet. Or he waits until the last minute to go to the toilet , at which point he doesn’t quite make it or he is so rushed, he pees over the top of the toilet on to the floor.

Last week he wet the bed but did not tell me; I only realised when the cat came in to the living area having raided DS wet pyjamas. His bed was sodden, including his pillow and duvet so there must have been loads. I gently approached him about it and he said he thought it was just sweat.

I’m repeatedly reminding him about cleaning himself after the toilet, going to the toilet etc but it doesn’t sink in.

He also briefly mentioned that he goes to the toilet at school, thinks he is finished but a few minutes later needs to go again (although he won’t ask the teacher to go because he’s already been). He also does not like to interrupt his activities to go to the toilet (much like an engrossed toddler!).

Should I be concerned about this? Or is likely an element of a boy being lazy?

Yes you should. He needs to see the GP to check for infection as a start.

I did have him checked for a urine infection but it was all clear. I’m not sure where to ask for help next?

Contact your school nurse and ask for referral to enuresis.

We've been on a long journey with DS(10) and he's finally been referred to the paediatric urology team in Leicester for scans. Currently diagnosed with overactive bladder, a very small capacity and significant issues with urgency. We're on our 2nd type of medication and overnight wetting has stopped but still got issues in the day. Not full wetting but lots of patches / desperate dashes to the loo and lots of frequent, small wees.

Definitely go to GP and try to get referred.

Has he been tested for diabetes?

Constipation can cause wee accidents. It’s very common in children especially children with ASD.

Sounds familiar. My autistic son is slightly younger but will delay going until the last second (result being he misses the toilet) and also quite often won’t fully empty his bladder because he’s in too much of a hurry to be done - result being he’s sprinting back to the bathroom 15 mins later.

It’s mostly behavioural I think. Definitely an element of demand avoidance.

As for general hygiene, would something like a checklist in the bathroom help?

DS is known to the school nurse so I’ll speak to the nurse, thank you.

@FusionChefGeoff thank you for sharing, your DS sounds similar to mine. I hope things improve soon.

DS has been tested for diabetes and those were clear. He goes to the toilet regularly and is not constipated.

Is the bed wetting new? I ask as we have a very similar ds, also 11, very occasionally wets the bed and trousers/PJ's smell. Never wet the bed younger. GPS suggestion was to try a reward chart 🙄. No infection. Not sure if it's something they'll grow out of or needs medical intervention so following.

@Takealeaf It is new in the way he has not wet the bed in a long time but he frequently did until he was around aged 8.

Unfortunately its fairly common in children (and in our case now adult) with asd. My dd does not feel the urge to go to the toilet, nor does she feel hungry or full (we wonder if they are linked in someway). All testing showed nothing wrong. Alarms help but I've bought her reusable pants designed for heavy periods/incontinence

Does he drink enough? He should be having about 1300ml a day.

Yes, he does drink enough during the day. I don’t want him to get teased when he moves to high school. I’ll contact the school nurse for advice but if it’s common with ASD, I’m unsure what they could offer.

They can make a care plan in school for hygiene needs. I’d contact the SEN department in school to make them aware, perhaps they can encourage toileting and provide an area to clean/change if needed.