DS 5 isn't bothered by being soiled

[SleepingStandingUp]

So da is not long 5, goes into yr1 Sept. He's been in reception at same school
.
Still not toilet trained.

Part of the issue I think is he doesn't tell me when he's gone, wee or poo, and will happily stay in a soiled nappy.

But it isn't just nappies. We was in bed waiting for DH to do stories and his drink leaked all over him, he didn't react. DH moved the duvet and asked why he hadn't said anything. DS said he didn't know it had happened. Similar has happened a few times over the years where say a drink of milk has slowly leaked over him and he's not reacted at all.

Occasionally he wets through his night nappy (he's in it borderline 12 hours so occasionally it's too much as he pees loads overnight), so he's waking in a wet bed in wet pjs. He'll come into us as normal, get in bed and not say anything until I realsie
He's under no concern he'll get in trouble for being well or dirty like this and I don't think "he's lazy" or "he's naughty" makes sense.

He is a bit precious about dirty hands and had sensory issues when younger about touching sand, paint etc. He still has some sensory issues around food so takes nothing "wet" like yoghurt or ice cream, but will tolerate dirty hands for beans etc as there's never any sauce.

Has anyone got any similar experiences or advice?

Were trying toilet training AGAIN but it'll just mean a lot of pee on the floor with two crawling babies thrown in so YAY!

And that wee went on the babies changing mat at least.. This is part of the issue, he wees so often! Been 30 mins top since the loo wee

Peeing frequently like that is not in the range of normal. It sounds like you need some specialist input - ERIC are the "go to", they really are amazing.

We had some real challenges with potty training and I felt totally lost and like I was failing . The ERIC team were absolutely brilliant and we worked out some solutions.

It sounds like your son is complex, give them a ring.

@AnneBullen

Chromosomal issues are hugely linked to spina bifida. Has he been looked at for occult spina bifida?

No, no one has looked at it at all. Referral to HV who gave advise on how but it's all been "he'll get there" but now he's 5, yr1 in mainstream and his poor 121 is having to help change him Inc poo as he poos generally in the daytime.

I had read about tethered cord as it seems to present in t18 babies but our paediatrician has retired, resp consultant who is normally amazing is rescheduling everything.

He's had xrays aplenty but of his diaphragm, I'm guessing that wouldn't be low enough to see?

@vivariumvivariumsvivaria

Peeing frequently like that is not in the range of normal. It sounds like you need some specialist input - ERIC are the "go to", they really are amazing.

We had some real challenges with potty training and I felt totally lost and like I was failing . The ERIC team were absolutely brilliant and we worked out some solutions.

It sounds like your son is complex, give them a ring.

Yes complex is the word we use 😂 I'll call them, I have him and twins so need some of them to sleep before I can but I will.

He's had 140ml through his tube but had a nappy on, and not even half a breaker of water. Dry toast. Hula hoops (so no additional food liquid). So I don't know where it comes from

Honestly I wouldn’t know, or even whether it would be X-ray or mri? I have a working knowledge of chromosomal disorders and/or relation to abnormalities in utero but that’s it.

Does he have a neurologist?

@AnneBullen previously but not now. Referred due to head size, excess but no pressure, immature something or other but now he's talking and handling mainstream we've been discharged

He has a third 12 and 18 chromosome in some of his cells so we check for some t18 conditions ie yearly kidney scans but it's fairly unchartered Waters

Re the soiling. He had an accident earlier, got upset told me. I told him to get off the waterproof mat he's peed on, and change his pants and socks. He did that then stood back on the mat so in the pee. He didn't react to it being wet, I had to tell him to get off it, move it, change his socks.
Is that just kids?
Is he just lazy / naughty and it's our fault for being shit parents?
Or should I worry?

Aagghh I wish he wasy 2nd

If he's got some sensory stuff going on that could affect his reaction - skin doesn't feel "wet", just hot and cold, smooth and rough etc. We cobble "wet" together from sensation and experience.

Eric told me that kids with pee/poo problems are never lazy/naughty. There's always a reason.

You may well be shit parents, I'd be surprised as you sound very caring to me!

My dd (7) has some similar issues.
Still in night time pull ups.
School nurse said ditch the pull ups.
We did. Night 3, she wet the bed. Had a huge chemical (from the wee) burn up her side and down her leg.
She didn't wake up.
She often wets during the day too. Even at home, she rarely changes herself.
We have been referred to continence. On the first step... waiting for the result of urine infection test.
So while not ideal, its not unusual for kids to not notice or not be bothered about being wet or dirty.

My ds is 7, just finished year 2 at school, was diagnosed with autism when he was 3.

He has just started to do a poo on the toilet. He has been in nappies 24/7 till February when he mastered realising when he needed to wee. He would wait to poo until in got his night nappy on when he was half asleep to poo.

Then one day during lockdown, he shouted that he was on the toilet and done a poo. He decided, he needed control and was relaxed because he wasnt at school.

My ds also doesn't decipher the messages correctly that his brain. Something could be hot, he says it's cold etc.

Sounds like he needs to have a physical check qnd once all clear, input from relevant hcp.

My ds school have been Brill as schools have to be with incontinence.

@MyNameHasBeenTaken

My dd (7) has some similar issues. Still in night time pull ups. School nurse said ditch the pull ups. We did. Night 3, she wet the bed. Had a huge chemical (from the wee) burn up her side and down her leg. She didn't wake up. She often wets during the day too. Even at home, she rarely changes herself. We have been referred to continence. On the first step... waiting for the result of urine infection test. So while not ideal, its not unusual for kids to not notice or not be bothered about being wet or dirty.

If you dint mind me asking, does she have any medical or learning issues or just a perfectly healthy kid who had continence issues? I think it's so easy to assume it's cos DS is complex and then I over think and over complicate

@Serena1977

My ds is 7, just finished year 2 at school, was diagnosed with autism when he was 3.

He has just started to do a poo on the toilet. He has been in nappies 24/7 till February when he mastered realising when he needed to wee. He would wait to poo until in got his night nappy on when he was half asleep to poo.

Then one day during lockdown, he shouted that he was on the toilet and done a poo. He decided, he needed control and was relaxed because he wasnt at school.

My ds also doesn't decipher the messages correctly that his brain. Something could be hot, he says it's cold etc.

Sounds like he needs to have a physical check qnd once all clear, input from relevant hcp.

My ds school have been Brill as schools have to be with incontinence.

You say have to be. HT I know parents who have been told their kids MUST be dry before starting reception, that if thry soil the parents will be called in clean them up etc. And this is PRE clovid. Glad we both have good schools but I do feel sorry for our lovely 122 who ends up in poo duty as they're bigan sized stinky poos. This is the other thing, so far we've had no bullying but I do worry as thry get older..

Thank you for the 99% of messages which were kind and supportive

Dd... where do I start??
Lots of issues.
Some confirmed. Some in the process of being confirmed.

She has hypermobile joints. Much worse in her legs. This can be a sign of weak nerve info passing to brain. Can affect toileting too.
She also has ADHD and ODD. Being assessed for ASD.
She is dyspraxic.
There is more... but I think those are the ones relevant to toilets

I'm sorry I can't really offer any advice but my 3.5yo is also still fulltime in nappies and doesn't seem bothered about being wet or dirty either.

@MyNameHasBeenTaken

Dd... where do I start?? Lots of issues. Some confirmed. Some in the process of being confirmed.

She has hypermobile joints. Much worse in her legs. This can be a sign of weak nerve info passing to brain. Can affect toileting too.
She also has ADHD and ODD. Being assessed for ASD.
She is dyspraxic.
There is more... but I think those are the ones relevant to toilets

It's hard isn't when they're complex cos it's hard to work out what's due to what

I’m surprised the health visitor was so unhelpful as there is clearly more going on than a usual late to train child. Hopefully now he’s hit the 5 you can push for some more specialist referrals. My daughter was a nightmare to train (just didn’t care) but was trained by 3. However, she’s always been prone to accidents. I think sometimes psychological (had a lot during the first few weeks of lockdown but I’m also wondering about physical issues. At the moment she seems to have and seems to have leaks- almost like her pelvic floor isn’t quite right. She is v clever and independent but toileting is more of a challenge. I’ve always been amazed on here by the posters who trained in 2 days and never had any accidents. That was never the case in our house.

They sent me on the toilet training classes but we lost out specialist health visitors who were great and got transferred to a normal HV at 4ish who I've never met. I think the disruption of being moved teams probably doesn't help and of course at the moment they're no HV service as such, we've not seen anyone since my 7 mo twins were 6 weeks. Called recently concerned about their development and the duty HV couldn't get me off the one soon enough

At 5 I think they start to come under the school nurse rather than HV so that might be worth exploring. I'd second calling Eric (their website is also worth a look). It is incredibly stressful but sounds like there is something going on inside that is making this so difficult, please don't blame yourself.

Thanks, our SENCO is good so hopefully she'll advise of she can Re school nurse. It's day 4, 2 wees so far and we're still only going when I tell him to. Mornings are hard cos he has 140ml milk via tube and then he was water to drink with his oral breakfast so there's a fair bit of liquid to dispose of u guess. Same between evening milk and bed and he def pees quickly of he has a drink.

We do a poo yesterday in the loo no drama so that's good, at least he doesn't appear to be withholding massively

Glad to hear he has had a few good days.
We are a school year ahead of you.
School nurse did our referral after we managed to speak to her in school.
They are not based at each school any more, but we managed to arrange an appointment after school for dd.
Dd was trained at nearly 3. 3-5 she has been brilliant. 3 hour car journey ok. Days out, fine.
But since about 6, she has been wetting a lot. She must own at least 30 pairs of pants. But had no clean ones today. My wash machine is on at least twice a week...usually more often.
No shorts or leggings or joggers or any other bottoms either.
She is often red raw from being in wet things, but only changes if we see a wet patch and send her off to change.
Your ds is not alone!
Read the Eric website, there may be something you haven't tried.
When schools go back, ask to see the school nurse.
Which part of the country are you?
If you are north west, I might have the right contact info for school nurse.
I think they have changed their name to "starting well" or something similar.
And to your ds, keep up the good work matey

@MyNameHasBeenTaken

Glad to hear he has had a few good days. We are a school year ahead of you. School nurse did our referral after we managed to speak to her in school. They are not based at each school any more, but we managed to arrange an appointment after school for dd. Dd was trained at nearly 3. 3-5 she has been brilliant. 3 hour car journey ok. Days out, fine. But since about 6, she has been wetting a lot. She must own at least 30 pairs of pants. But had no clean ones today. My wash machine is on at least twice a week...usually more often. No shorts or leggings or joggers or any other bottoms either. She is often red raw from being in wet things, but only changes if we see a wet patch and send her off to change. Your ds is not alone! Read the Eric website, there may be something you haven't tried. When schools go back, ask to see the school nurse. Which part of the country are you? If you are north west, I might have the right contact info for school nurse. I think they have changed their name to "starting well" or something similar. And to your ds, keep up the good work matey

Thank you, I called Eric but they're not taking new calls til Monday. After 10 days of no progress we've reverted to nappies as my usual 1-2 poos a day boy want going every day and had really city back on his drinking. Given our issues with feeding and drinking I thought I'd ease off to I speak to them. Will ask about school nurse thank you, were West Mida

I spoke to ERIC, took a few weeks as they'd closed to be calls then had to wait for a nurse as da had a bowel resection previously. She definitely thinks it's constipation so we're going to try extra fluid (thank you PEG!)