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.

Op that is so sad.I am sure you are at your wits end.I don’t really have any advice but wanted to say it sounds as if you’re doing all you can.Perhaps one day he will learn the hard way which would be unfortunate but maybe what he needs to start ensuring he does use the loo before it’s urgent.

This must be so distressing for him and you.

Are there no drugs he can try? My friend’s daughter has had similar trouble for a few years and her mother pushed very hard - she has now been medicated and after 3 days of treatment she had her first dry day at school.

I’m no urologist but I think you need to push his GP or consultant as hard as you can.

Did you ask to be assessed by his local child and adolescent mental health team or the psychology team attached to your children’s hospital. Is he under anyone at the children’s hospital medically?

Your local general mental health team will never see him. If you can get him into that paediatric psychology team attached to his local kids hospital I think they will.

The response of the nhs here is dreadful. Surely they can do something else for your son.

I’ve got no experience here but hopefully someone will be along who does

Would a vibrating watch help him? You can set several alarms through out the day (time for end of lunch time/before he walks home etc) so that he k ow to go and try them.
If he has something discreetly reminding him he might be more willing to just go and try??

DS1 was a lot younger (6) when we had the watch but he was so stubborn and you would ask if he needed to go and could see him jogging around but he would still say no and then wet himself!! The watch gave the control back to him in a way and he was much more willing to go when the watch said.

Also due to weak muscles he had physio and a course of hydrotherapy which also helped strengthen his core.

It's sounds like he's trying to be as much like his friends as possible and wants to be normal and fit in and by pretending/acting that he doesn't have a problem
I had a friend at school who refused to take insulin because she didn't want to be seen as different and at that age any consequences to not doing this never entered her mind other than being told of by her parents
Is there anything he enjoys that help with his confidence like music or sport

He was assessed by the psychology team attached to the children’s hospital. He's under a consultant and paediatric urologist there and has had scans, MRI, urodynamic assessment, etc. It seems it was the impaction that was the original issue but he now has a 'twitchy bladder' which he doesn't fully empty even after sitting on the toilet for ages and 'double voiding'.

He did have medication (tolterodine) for an overactive bladder but it didn't seem to make any difference (and gave him headaches).

He has a vibrating watch, which worked for a couple of days. He then just ignored it.

Incentives/rewards don't work. Neither do consequences. Eg we took away his tablet after he wet himself on the sofa while playing on it. He was upset at first but now doesn't even ask to use it. He said he knows he'll probably wet himself while on it so it's not worth it.

He doesn't really like any sport, and he enjoys listening to music but not playing. He's very shy and does lack confidence (although I do too so I think he'd have been shy even without the bladder issues). But he has a group of nice friends and gets invited to parties and to friends houses. He would never tell them about it though (even though they probably know). I suggested confiding in a friend but he said it would be the worst thing ever if his friends found out.

DH said we shouldn't let him go on any school trips or to any parties until he can show he's trying to use the toilet when he needs to, even if he still has accidents. He thinks there should be some kind of consequence for weeing on other people's chairs, cars, etc. But I'm not sure, I think this will knock his confidence further and is likely to just give up.

Just realised I put DD in the OP. Meant DS!

Hmm From your op the main issue at the mo that could change is him avoiding the toilet (to fit in? Cos he’d rather stick his head in sand?). I wonder if this was the same when psychology assessed him. I’d go back. Good suggestions here re physics etc but your main issue is behaviour change and I really don’t know if strong arm tactics will help that.

My dd has similar issues, but just with weeing. She toilet trained well and all was fine until she was about 8-9yo, when she started having accidents at school/when out. I think it's that she tries to hold it and hold it, and then she doesn't have time to get to the toilet. This has obviously become a habit and is hard to break, and now she's forgotten to listen to her body's signals, etc.

She has Aspergers and just wouldn't engage with any suggestions/help, etc, and wouldn't see a doctor about it. Eventually convinced her to see a Dr. when she was 12yo, and they did a scan and an intimate exam and said it was nothing physical, and that everything looked normal; they said it was a habit and she needed to retrain her bladder/habits. They suggested going every 1-2hrs whether she felt she needed to or not, and gradually lengthening the time between, etc, but she just won't follow it.

We also tried a watch, but she won't wear it. She also takes tolteridone, but isn't great at taking it regularly, and I can't make her have it (she's 16 now).

I really believe that with effort on her part, she could "cure" this, but she won't help herself. She has a toilet pass, but doesn't always use it as other kids know what it is. She just won't go at school and doesn't want to waste her breaks in the toilet (her words).

She's recently admitted that it's got worse, but refuses point blank to try anything or to go back to the Dr. for help/advice.

I'm at my wit's end and so frustrated, especially as I think it could be solved if she'd comply with the suggestions she was given. Sorry, no help, but really sympathise. You're not alone.

ScienceIsTruth so sorry you're going through this too, it is so hard isn't it. My DS is exactly the same with the toilet pass, he's even been given 'leave the class' passes that don't have any reference to toilet on them but he won't use those either.

Everyone keeps saying he'll grow out of it but if anything it's getting worse. It's become such a complex issue, and he just won't talk about it. I think even if we could afford a private psychologist, it would take hours and hours before they'd even get him to speak.

So frustrating as they get older and you can't 'make' them do anything, they have to want to help themselves.

We have/had a similar situation with soiling. 6 months if drama therapy has made a significant difference, even though most of the sessions are not spent discussing this particular issue. Instead there is a lot of associated work on ancieties, feelings and relaxation. I don't really understand why it's helped (we found the therapist in utter desperation) but it has. We have to pay, of course.

anxiety

tenton are his friends kind? I was just wondering if there was someone you could take into your confidence so that he could casually say I’m going to the loo before next lesson and your DD might tag along?

It must be very embarrassing for your DS but I know that my own lad would happily and discreetly help in this way if asked.

DS sorry not DD

Oh and it took 6 sessions before he relaxed enough to say anything much. So yes, it does take time. He's also a bit younger than your ds - 10 - which helps.

Does he do his own washing? Would the inconvenience of having to sort it out himself encourage him to pay more attention? Then he wouldn't miss out on activities but still has a consequence for not trying to help himself.

My son is the same (not the wetting anymore) he won’t use any strategies in school like cards or anything ‘different’. It makes it hard work doesn’t it!?

Have you asked your son what he thinks? What would he use?

Have you seen an OT? Have you heard of the interoception sense?

It controls bladder, hunger, temperature etc. Might be worth a read.

www.growinghandsonkids.com/interoception-8th-sensory-system.html

center4lifeskills.com/what-is-this-8th-sense-interoception/

This is an excellent link, it does mention autism (not suggesting your son has autism)

What is this 8th sense: interoception?

“We all know of the five basic senses: smell, taste, sound, touch, and sight. Two of the lesser known senses are movement and proprioception. There’s a new buzz in town, however, and it is interoception. It’s considered the 8th sense.
Thanks to advances in brain imaging, we’re not only learning about what it is, but we’re also learning how it impacts our daily life. Think of interoception as the physical feelings in your body, which then tell us what emotions we’re feeling. In fact, think of some of these phrases. There is truth to all of them: lump in your throat, broken heart, butterflies in my stomach, cold feet, gut feeling, follow your heart, clammy hands.
So, how does this apply to us?

Many people with Autism Spectrum Disorder (ASD) and other disorders have difficulties with interoception. In fact, what we are learning about interoception might explain some of the little understood patterns of ASD.
We know that individuals with ASD have limited information alerting them to act or use strategies. Therefore, emotional regulation is different. We see meltdowns, high anxiety, rigid thinking, overwhelming emotions, resistance to change, and poor problem solving.
Basically, we can look at interoception as an over or under awareness of our physical body signals.
Under-responsive interoception

With under responsive interoception you may not notice internal signals. You don’t feel states or emotions until they’re very intense. For example, with explosive anger you don’t recognize the feeling of anger, but recognize anger because “I hit someone” and were taught that means anger. Or, it’s hard to answer questions about how your body feels when hungry, angry, calm, thirsty, etc. It’s a vague feeling but you can’t identify the sensation. In fact, poor interoception awareness can lead to wet pants due to an inability to register the sensation of a full bladder.
In one case study, a boy described a feeling in stomach. Was it hunger? He ate. No, it wasn’t hunger. Did he have to use the bathroom? He did use the bathroom, and that wasn’t the feeling either. He learned from occupational therapy sessions that the feeling was stress”

We are in a similar position with our younger DS. In our case, I raised the question of feelings and apologised for having focused so much on the practical that we hadn't addressed the emotional side. DS was very receptive-to a degree that surprised me, in fact.

It turns out DS had given up hope of improvement and was just shutting out the whole thing out of despair and embarrassment.

Just acknowledging the emotional impact has had quite an effect. DS broke down with DH the other day and poured his heart out about it. He is keen on having some counselling and we are trying to find something suitable. We and he feel more 'on the same side' and DS feels less alone with the situation.

So, I completely sympathise. Would your DS be receptive to supportive chats with you? Not about strategies, etc, but just understanding how crap it is, and how he feels? It might just trigger a bit of improvement, but even if it doesn't you might all feel better for it.

Apologies if this sounds a bit pat and if you've tried all this before.

Have you had a look at the ERIC site (www.eric.org.uk). They have advice for incontinence and soiling.

I know you mentioned about the pull ups for your son if he's at someone's house or at the cinema. Have you looked at Tena Men's pads?

Our son has soiling issues so and someone on the ERIC site mentioned that they use the lighter ones back to front (largest area to the back instead of the front) in pants to save keep washing soiled pants. So we've done that and he's become more confident and the soiling is improving.

You can get actual pants or pads just like the women's range and you can get them in black which is great for darker underwear for school.

At least he doesn't have to be so embarrassed whilst you're working on the problem.

ReginaBlitzkreig that's really positive that your DS has opened up about it. What you've said really resonates with me. We seem to spend so much time talking about how to stop the accidents and feel as though that's all we talk to DS about, and I'm aware we don't always acknowledge his feelings. He's so closed about things though, it's really difficult to get him to talk about anything that's worrying him. He sometimes says he's worrying about something but then finds it really difficult to say it out loud. When we're playing or chatting about random things you can't shut him up but anything emotional he shuts down.

LondonJax yes we've used the ERIC website, they weren't very responsive when I asked for advice but they do have some good info about different products. The urology nurse has told him not to use pads because he'll get reliant on them and not try to get to the toilet. But we've come to the realisation that he's not going to get to the toilet anyway so we might as well help him be discreet about it. I'll look into those.

Shedmicehugh1 thanks for those links, I'd not heard of that at all, I'll have a read.

Happyandshiney his friends are kind, and I have considered having a quiet word with one of them, I'm friends with his mum and she actually suggested it. But I'm worried DS will feel I've betrayed his trust. He relies on us to keep it discreet (although I'm almost certain his friends are aware of it and have chosen not to mention it) and if he thinks I've talked to his friend about it he might be even more reluctant to talk to us about things.

GummyGoddess yes he does his own washing some of the time. He moans about it and needs reminding to actually put things in the machine rather than leaving them on the bathroom floor but it doesn't seem to make a difference.