My 8-year-old son has been wetting and soiling himself for a long time now. We have been referred to hospital specialist nurses who are helping retrain his bladder. This was over 18 months ago and we are still no further. They told us that he may not know when he needs to go the toilet but can't say this is definitely the reason behind the accidents. They have said they can't do anything about the bowel side of things until bladder problem is under control.

It is occurring everywhere: school, out shopping, family outings, parties, at home, literally anywhere.

He won't tell us until we smell him at bedtime. If he has soiled or wet he will hide his pants and won't clean himself up.

We have tried many approaches: Talking, trying timers, a wobl watch from hospital, reward charts, naughty step, making him clean his own underwear, taking away privileges, stopping sleepovers, making him strip off bed each day when he has had accidents through the night. Honestly the list goes on. Nothing at all is working.

After all these years I'm at the end of my tether. I am getting upset and find myself crying over this when he isn't around. He is now in year 4 and residential trips are coming up which he isn't allowed on if he still has these problems because of hygiene reasons and because of other children who are also on trip. He is being tested for autism through school.

Can anyone help me at all? I need some advice on what to do next. Should I be asking to speak to anyone else?

  • There are very good answers below. Don't panic if there is a diagnosis of autism. I was diagnosed with autism when I was closer to 60 than 50 years of age, after several successful careers. Autism is a common symptom of many apparently unrelated metabolic issues in the brain that are not really understood at all. While it is possible that understanding the autism is the key to this, it is also possible that the to are unrelated.
    – pojo-guy
    Sep 22 '18 at 22:19

Have you considered looking into seeing a gastroenterologist?

Back before I was diagnosed with Chron's/UC there would be times that I would just be unable to control my bladder. I was able to tell when it was going to happen but there were instances where I wouldn't be able to hold it (even if the bathroom was 20 feet away).

  • Can I just ask the doctor for a referral for something like this. He seems to make a lot of excuses and I can't tell if they are just excuses or if he actually can't control when he is doing this. I feel terrible cos I keep going on at him when ever he does it bit even when he does have things taken off him and anything else I have tried in the past just doesn't work. I get a tea took from him at the time but it doesn't seem to stop the continence problems
    – Becky
    Dec 7 '17 at 21:20
  • Yes, your doctor should be able to refer you to a gastroenterologist. It may be hard for them to diagnose, though. It sounds like there may be some psychological issues at hand as well if he is making excuses. Has he given you any indication of if there may be an underlying issue?
    – sej
    Dec 7 '17 at 22:09
  • Yes we have discussed with him to see if anything is going on at school or if anything is on his mind or if he is worried he said there is nothing. When we discussed with the urologist nurse and consultant they said that he may have encropesis (unsure of spelling) but they couldn't say for definite as it hadn't been investigated but we'd have to wait until wetting side was under control as bladder pushes on to bowel aswell. To be honest he has had a lot of loose bowels as a baby but it seemed to settle for a long while. When nurse and consultant told us this I felt worse for punishing him
    – Becky
    Dec 7 '17 at 22:35
  • @Becky it's "encopresis" and there are a bunch of other questions on our site about it -- take a look at them for some additional input!
    – Acire
    Dec 7 '17 at 22:58
  • I will have a look to see what they say. I did put the encopresis on tag I just couldn't think of how it was spelt
    – Becky
    Dec 7 '17 at 23:05

My family is going through a lot of the same issues you are. Our 7 yr old son has a bowel obstruction that has made it impossible for him to know when he has to poo, so he goes through a dozen diapers a day due to leakage and his lack of motor skills keep him from cleaning himself properly.

Lets start with the Autism, the school system only cares about autism as it relates to academics, they do not care, and in fact are not able to care, about it medically. That is why it is very important to go to a developmental pediatrician for diagnosis. It can change your families' life for the better so quickly, and is well worth the money as your insurance will probably not pay for it. Or they will pay for it, but there will be a multi-year wait for an appointment.

It sounds like you have specialists looking into his urological and gastrointestinal issues, do your best to find nurses and doctors who have experience with children and especially autistic children. Our son also has Sensory Processing Disorder so often cannot describe what he is feeling to us in a way that we can relate to, for example, when he gets craps he tells us he feels "blue" and when watching him he actually breaks out in goose-bumps like he is cold. We are on our second GI doctor and not having a lot of positive results at the moment.

You may also want to look in to diet, he may have an allergy that is causing the issues. Have him tested for allergies. We have not done that, but it may be in our future.

Hang in there, keep fighting, build your support team, and good luck.

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