Losing hope about son's toileting issues

[BigLittleRedOne]

DS is nearly 7 and has always struggled with toileting. Wet accidents and occasional poo accidents. Still in nappies overnight.

We were referred by GP for scan of bladder and all normal. Then to a paediatrician specialist who has diagnosed overactive bladder which also affects his ability to pick up on needing to poo.

He is now on tolterodine (for about 6 months now) which doesn't seem to be having much effect. Every day his pants are wet and often there is a small amount of poo in them too. It's never a full wee or a full poo, but more like lots of small leaks.

I know from talking to him that he often doesn't know he needs a wee until it's urgent, and then often doesn't go to the loo on time because he's too busy playing or having fun. He claims to not know when he needs a poo. I think I can count on one hand the days in the past 6 months when his pants have been clean/dry at the end of the day

I am just feeling so at my wits end. I try SO hard not to get cross or frustrated but I do fail at this when I'm dealing with shitty pants for multiple days in a row. He often hides them or doesn't tell me when he's wet or dirty and I know he feels ashamed. I really worry about how and when things will improve for him as sooner or later it's going to be picked up on by his friends and his self esteem will be affected. I can always smell that he needs to get changed when he gets home from school.

He is a very sweet kid and I feel awful as he gets down about himself for it - I just wish I could help him in some other way. We have tried reward charts/points for clean pants, points for going to the loo unprompted etc but sooner or later it reverts back.

We will have a follow up with the specialist at some stage but at the moment we are waiting for the appointment.

Has anyone been through anything similar or has any words of advice? I don't know any other kids with this issue so feel quite isolated and hopeless!

Don't want to leave you on unanswered threads.

Sometimes small amounts of poo like that can be because the bowel is impacted (full) and it is just bits squeezing round the mass that is impacting.
I'd press for a scan of his bowel.

ERIC are very helpful - if nothing else in at least realising you are not alone - but they have some great information too.

I'm another person wondering if he's constipated with overflow coming out as accidents. Agree that the Eric website is well worth a look.

Having supported children in school who sound like your DS, one thing we implement is a very structured timetable for going to the toilet. We have been able to secure funding as it is classed as a medical issue at this point, and we used that funding to pay for a TA who would take the child every hour to the toilet. We made sure they didn’t restrict their fluids and also ate lots of foods that aid with bowel movements. Positive reinforcement, being non judgemental, praise and patience more often than not will eventually work. It’s pointless telling him to remember to go - he has to be taken. Not just asked IF he needs a wee or poo.

I also am questioning constipation, we had this exact problem with my three year old that was resolved by clearing her bowels.

This issue is a lot more common, than many people may think.

Try not to worry and just continue loving and helping him and making him not feel embarrassed or ashamed.

He's a gem and your beautiful kid.

Some ideas:

1. Could he also wear disposable children's pull up pants during the daytime (as well as night) just to give you a break for dealing with the poo and pee?

and

1. Use a watch. Set alarms for every 1.5/2 hours - to remind him when to go.to the loo. First try at it at a weekend just to see how he responds and then at school etc. Responding to an alarm on his own watch may make him feel a bit more grown-up and encourage him to go.

(if you have other children - you could get them a watch each too - just so he doesn't feel different. You and his dad could also wear watches with alarms etc to encourage him to mimic you. It could be a family thing - just to help him - for now)

3, He needs to clean his bum - so talk to him about cleaning until the paper is clean.

4. Don't be frightened about speaking to the school about it. Teachers have heard it all before and deal with these issues every day. If you use the watch alarm - or other system like the TA mentioned by Soontobe60 in their post above - they need to know - because the can help you with it. He could also take extra regular pants or pull-ups to change in at school.

1. Many children, especially boys issues around all this. Their bladders or other parts of their body (certain bits of their brains) may be slightly - not fully working properly yet - but this can change with increased age. Some people will have this their whole lives. They have gone to uni, are married with kids etc and they still have some accidents on a regular basis. They have very understand wives - who treat it fir what it is - a medical condition.

Your son is still a baby - he's only nearly 7. That's still very young when it comes to things like this.

Great that you will be seeing a specialist. They will fill you in a lot more.

Remember: As they develop some kids will just grow out of it - some may not - but either way he will be okay.

Your description of him made me wonder how his interoception is. My daughter, has terrible interoception in some respects. She doesn’t notice she is hungry or cold or having an asthma attack. She has adhd and her friend who also has it, doesn’t notice she needs to wee until the last second and was still having accidents at 7.

I’m not saying your son has adhd but as our OT says, we are all a bit sensory in different ways.

I would be tempted to take him to an OT and get them to help him with noticing he needs to go. They also have lots of excellent work arounds and reminder ideas for the meantime.

Hi OP, I can message you directly if you prefer but your DS sounds like he has the same issues as my autistic 5 year old, we now have been prescribed another medication to ‘make him go’ within 20 mins, we administer it every 24 hours after bath time and he does a 💩 everyday at the same time and empties his bowel. I know this doesn’t help your issue with wee, but it may help with the 💩 sensation problems? We had constant accidents and nappies until earlier on this year, now we’ve had none. Happy to give more information if needed. 🙂

My son is autistic and was slow to toilet train. We used pull ups in the day. School had a cleaning plan for him. He had no issues at night. We had a specialist referral but the issues resolved before we were seen.

Been there, got the tshirt etc and totally understand the frustration and trying not to show it and the worry about him smelling and his friends picking up on it. So a handhold to start.

DS is 8 now. He was always slow to poo. After years of movicol, GP visits, chat with ERIC on the phone and one appointment with a specialist bowel and bladder nurse we weren't really much further forward. The smallest possible dose of movicol made him just do small nuggets of poo 6, 7, 8 times a day. Mostly in his pants. Nobody would listen when I explained that he was going regularly just not often and when he did it was a full clear out and a normal poo, just massive. So I don't think he is constipated in the classical sense, just has a really slow system. We now get smeared pants a couple of times a week when he's gearing up for a big poo but nothing like it used to be.

Sometimes damp pants too when he just leaves it too long and he is soaking wet every night. When we're at home we just wash his bedding every day and hope it will change eventually but we're away for half-term so I've just had to go and buy him nappies again.

So no magic answers OP I'm sorry but you're not alone.