To think my child will never get better

[tentontruck]

DD is 11 and at secondary school. He has never been dry since potty training and still wets himself every day.

He originally wet and soiled himself and it was only after being given advice on here that I pushed for an x-ray to see if he was constipated (the GP and consultant had continually told us he wasn't). The x-ray showed he had really bad faecal impaction so and since then he's been on an assortment of laxatives to deal with this.

He no longer soils himself (well very rarely) but the fact that his bowel had been restricting his bladder for years has meant his bladder is very weak and he needs to wee much more often than usual. The urology nurse has given him exercises to do and he has to drink loads each day to strengthen his bladder and this is working, he does have better bladder control and rarely has accidents at home. But often when he needs to go he has very little warning.

The problem is at school or when he's at friend's houses. He always comes home soaking wet, and has wet himself on other people's furniture, on buses, etc. We now make him wear a pull up when we know he's going to be sat for a while (eg at the cinema) but he hates it.

At school he has a medical person who reminds him to go to the toilet. He has a toilet pass so he can leave the room whenever he needs to. He has permission to use a separate toilet to everyone else if he needs to, and he has a locker for spare clothes and also carries some in his bag.

But he has developed a complete mental block about going to the toilet. When he came home wet today I asked him whether he'd been to the toilet before his last lesson and he said no. I asked him why not and he said he just can't at school. He knows he should but he can't make himself leave his friends and go.

When we were at a shop the other day he tried to get my attention but I hadn't noticed. When he eventually caught my eye I asked 'do you need the loo?' and he was mortified and said 'don't say it out loud in public!'. I tried to explain afterwards that saying you need the toilet or asking where a toilet is is a perfectly normal thing to do but he assumes it'll mean that everyone will know he wets himself. So when he's out with friends and we're not there he'd rather wet himself than ask where the toilet is, and then has to spend the day trying to hide the fact. We've explained over and over that friends will smell him and that would be worse than then thinking he goes to the toilet slightly more often than usual.

We've asked for him to be referred for psychological support but he's been assessed and they said he didn't need it. We can't afford to pay privately. We're already on our knees with the amount of extra clothes we have to buy, the ridiculous amount of washing we have to do, and the sheer relentless of it and thinking it will never get better.

My ds is 14 and used to do both, soiling and wetting. He has limited sensation and wasn’t realising he needed to go until, he started to go. Like the links I posted earlier. ‘Back flow’ and ‘seeping’ etc where suggested to us. Motival etc prescribed. Making him sit on the toilet at regular times, toilet passes, his own designated toilet etc, etc. Nothing helped.

We have never punished or rewarded. Drawing attention to it and throwing strategies at it, made it worse.

What helped was asking ds what he thought about it, how he felt etc. Eventually supporting ds to recognise his own signs of when he needed to go, which were very different to ‘our’ signs.

We had an appointment with the urology nurse yesterday and she has suggested seeing if he can see the school counsellor.

Everything the nurse suggested he couldn't do, eg she said could he use the disabled toilet at school (as he'd said he doesn't like the toilets as the locks don't work and he won't use a urinal) but he said he can't because people will ask him why. She asked if wetting himself makes him worried or uncomfortable and he said no and that nobody has noticed so it's fine. But it's clearly not fine. He got quite upset and defensive talking to the nurse (and I also got upset) so I think if he can see the counsellor it might help.

We've got an appointment with his teacher on Friday so will see what she suggests. He said he's happy too see the counsellor but he doesn't think they'll be able to help him.

Cant help but your poor ds. X

What a hard situation for you all. It is a good sign that he has expressed willingness to see a counsellor, hopefully that will really help him. I just wanted to make a suggestion about having a code for when you’re out and about. Perhaps you asking if he needs to wash his hands, or he can say he’s just touched something sticky/dirty and need to wash his hands. So you both know what you’re talking about, but he feels safe that no one else does.

Is your son under the children’s continence team? If not, then demand your Gp refers you.
My daughter was under them for bed wetting until the age of 11 and luckily grew out of it. They were very good.
They may be able to help with medication to help the bladder or signpost you to suitable medical aids to help to discreetly hide the problem when in school.
If you don’t have any luck with the Gp, the school nurses can help out or refer so it may be worth giving them a ring as you may not have the same hassle as trying to get an appointment.
If you go onto your local community trust web page they may have the number for them or speak to the school and they can provide the number.

Oh sorry, I seemed to have missed your comment that he had seen a urology nurse x

Following this with interest as my 9 yo ds still regularly wets himself.

He's never soaking though, unless he's wet the bed, but I can live with that every so often. Instead he's a little bit wet most days. I've seen a good about it a few times but haven't been in about 2 years probably. I suppose I've just got so used to it now and the fact that he's 9 has just crept up on us.

What is most annoying about it is that if we bribe him/blackmail him enough he can stay dry for several days, so i don't tend to think that it's a physical thing.

OP I really feel for you. I was a bit like this when I was young. I don't think I really became fully dry until secondary school. My parents were at their wits end with me. I still don't really know why I did it either. I would just hold it and hold it until it was too late and then just block out my wet pants/skirt and assumed that no one else would notice (which of course they must have). Punishments made no difference and any attempt by my parents to punish me just increased my shame an anxiety but didn't help with the problem. I was a bit shy) (though had plenty of friends). And remember finding the act of walking into the toilets in itself something quite embarrassing - partly connected with a fear of going into the boys toilets by accident but that definitely wasn't all of it. Unhelpfully I don't really know why it stopped. Could have been me attention seeking as my parents had a lot on their plate dealing with other dc with significant health problems. i feel like the only thing that could possibly have helped would have been someone talking to me to try to help with my anxiety about it all. Sadly as it was the 80s/90s I got none of that and actually a lot of it was minimised because of embarrassment. I really hope it resolves itself for your ds as it did with me. It sounds like you are being an amazing support to your him and when he is old enough I'm sure he will appreciate this! Good luck.

Just for times in public could you agree a different question you can ask? If my mum asked me if I needed the toilet in a shop aged 11 I might be worried that someone might hear.

Yes asking a different question in public is a good idea, I'll speak to him about that.

Something he said to the nurse that surprised me was when I told her that he's much better when he's with us but has accidents when we aren't there. And he said 'that's not true, when it was non uniform day at school I didn't have any accidents and you weren't there then'. So I asked him what was different about that day and he said he was wearing lighter coloured trousers so he knew people would see if he wet himself. His normal school trousers are black so you can't really see of they're wet but you can definitely smell it.

So he can do it if he really tries but he just doesn't seem to want to because he thinks nobody notices.

No advice regarding his condition but I can tell you that you should be qualify for the watersure scheme which may reduce and cap your water bills if you are on a meter. May help a little with the extra associated costs. You have extra costs due to a medical condition in the family.

@tentontrruck my dd doesn't seem to care either and thinks no one notices, but I can smell it, so I'm sure others can. She also has a normal pass for when things get too much and has been told she can use that when she needs the toilet, but she still won't. She really appears not to care that she's always wet. Unfortunately, she has very few friends, and most of them aren't really her friends but she can't see it. She just clams up when I try to talk to her, although she's taking her meds more regularly, so I'm hoping we'll see an improvement, although I'd rather she retrained herself than spent the rest of her life on pills.

I feel for you and your DS.

Has he only ever been prescribed Tolterodine? DD was diagnosed with a jumpy bladder at 7. Before diagnosis she had been prescribed with Oxybutynin, then Tolterodine, neither of which did very much for constant daytime wetting. After having urodynamics tests she was prescribed Detrunorm which she has been on for four years and completely fixes the issue. She never had a problem with soiling/impaction, so the root cause of her difficulties may be different to that of your DS, but we have been told the problem should fix itself once she hits puberty.

Of course I don't like her being on constant medication, but vibrating watches, reminders to go to the loo, double voiding, drinking plenty etc just didn't work on their own.

Perhaps ask the urology nurse if there are other medications he could try?

He sounds resigned to the whole thing, as if it’s just something that happens and he feels he has no control. He seems very worried about being seen as ‘different’.

Our only break through has been my ds being able to say what he finds difficult and what will and won’t help. Rather than being told by adults what they think will help.

This came about by asking ds, he doesn’t always have the answers, needs time to think. But I stopped giving him solutions and encouraged him to find his own.

Going back to the excuses about the school loos - the toilet locks don't work? Contact the school and ask that this is sorted immediately, and tell them the effect this is having (albeit its probably not as simple as one thing), and ask them to have it sorted on every door in every loo, male and female. Remove that excuse for him.

DD (11) was diagnosed with a jumpy/twitchy bladder when she was 7 after a stressful couple of years of daily wetting. She tried Oxybutin and Tolterodine but neither really worked. Things only got better after we were referred from Urology to the Paediatric Continence Clinic and the fab nurse prescribed Detrunorm after urodynamics tests. The fixed the problem immediately and she's been on it ever since, gradually reducing the dose.

Not ideal for her to be on long term medication but like your DS, she found it embarrassing to ask to go to the loo or would just 'forget' and then have an accident.

I would go back to the docs and ask about alternative medication.