ERIC
2,287 members1,054 posts

Nine year old still wet.

Our 9 year old son is a happy and active boy, but has never had a completely dry night. I think that over the years we have tried just about everything: alarms, lifting, rewards, desmopressin, oxybutynin, drinking more, drinking less, doctors, nurses, clinics etc. etc.. Nothing seems to significantly improve him. We know that he has a small bladder for his age (about 150ml) and when he was last using the alarm, he was often wet 3 times and sometimes 4 times a night. He was also very slow to potty train, about 4 1/2, and even then he wasn't very reliable. What is more distressing than still being wet at night is that he often wets whenever he falls asleep. This is usually in the car, on long car journeys, but has been on a plane, on the sofa in front of the television or anywhere where he falls asleep. What is absolutely terrifying him is that he has a school trip coming up at the end of March, for 4 nights. He doesn't want me to tell his teacher and he would be so embarrassed if his friends found out about his problem. He would quite happily miss out and just not go, but everyone else in his class is going and it's generally expected that everyone should go. We could really do with a magic cure and any suggestions would be really welcome.

29 Replies
oldestnewest

My nearly 9 year old son has day time wetting so can’t advise specially on the night time wetting but do feel for you both!

Most parents on here have been through all the tests and meds and clinics!

From a personal point of view I was a night time wetter when I was a child and yes I did “grow out of it” but at the time I used to sleep through the alarm or just get out of bed, get a towel and cover over the wet patch and go back to sleep!!!!

My son is currently waiting for funding to be approved for a treatment called PTNS, look it up! Sounds like they currently have a few older kids trialling it at the moment on the 12 week programme and with a good success rate for night time issues I would get hold of your paediatric/urology hospital contacts and request to speak to someone for advise on whether this is carried out in your area

Re: school trip. Really tough one. You won’t be able to fix your child in time for the trip and it would be a shame for him to miss out otherwise kids tend to receive negative attention from not going. Speak to your child and big up the trip and say everything will be ok. Say them you will speak to School privately about this. I would bet money that they are used to this. There are more kids out there who bet the bed than people realise but no one ever talks about it. !!

Get a care plan set up such as they wake him at night and get him to go to the loo and/or they wake him an hour before the others and give him spare PJ’s to get changed before other kids wake up. In order for your child to go on the School trip they should support them

Sorry for the waffle but I hope it helps a bit. Good luck!

2 likes
Reply

Hi, 10mg Oxybutin combined with a Desmo tablet every night slowly worked for us. Along with a routine of no fluids after 7 & a wee before shower and a 2nd wee before going to sleep. (We found that 2nd wee crucial!) My daughter is now ten and we have managed to ween her off the oxy and she now only takes the Desmo-melt which I think she can come off soon too.

I feel your pain - it feels like they are never going to grow out of it - but he will... you just need to be in for long haul. 1 in 4 children suffer from bedwetting - so he won't be the only one in his class!

Good luck!

1 like
Reply

Hi, I hope you don’t mind me asking, but I’ve just had a google of PTNS. Would you be able to tell me what part of the country you are in? This is something I will be taking to our next appointment. Thank you for the heads up on this treatment. Good luck I hope it works for son.

Reply

Tough one. I can see this being us in a few years' time. Can he wear baggy PJs with some kind of adult incontinence pants underneath?

I guess a teacher would need to know though to help him escape to put it on discreetly and dispose of it in the morning.

1 like
Reply

How much investigation has your son had? Does he have a diagnosis for why his bladder capacity is small?

Reply

Thank you for your suggestions, which we have basically decided to follow. Regarding his small bladder capacity, the doctor suggests that he drinks plenty and try's to hold on as long as he can, to try and stretch the bladder. This is easier said than done, especially at school, at the shops or anywhere other than home, because when he need to go, he really needs to go! Personally, I think that he has a bit of an overactive bladder, but the oxybutynin didn't really help, which we are told it would have done if he had an overactive bladder. We are also told that everything will sort itself out with time, which really doesn't help us!! I guess we must just keep plodding on!

Reply

It sounds to me as though you haven’t had any input from a paediatric urologist, and my advice would be to push for this. My 6 year old son has all the signs of having an overactive bladder, but actually, now that he has had some investigations, he has been given a diagnosis of “voiding dysfunction”. He may have overactive bladder as a secondary issue, but it is not the primary problem. He too has a small bladder capacity as part of it all.

If oxybutynin isn’t helping, I think you need to push for investigation to ensure that overactive bladder is the correct diagnosis, as the treatments for this and voiding dysfunction are different. Hope this helps - see my other posts for further info about my son’s condition and the tests he has had so far, if that is helpful.

2 likes
Reply

Oxybutynin did nothing for my daughter and she does have an overactive bladder....I've seen it twitching on an ultrasound! Equally we were told time and time again by local professionals that "she'll grow out of it" and I now know she wouldn't have. It wasn't until we finally got a referral to a specialist children's clinic that someone finally told me what I'd know all along, there was a problem.

You didn't mention the urgency issues on your first post but at the end of the day, you know your child best and if you believe there is an issue, there quite probably is. None of us want to believe that our child has something wrong with them so we let the professionals convince us. Equally we don't want to be "that pushy parent who knows best" but you'll probably find most of us on this site have had to be it at some point or another too!

I really, really hope that it will "sort itself over time", I'm sure some do but if you have doubts, for both your sakes, I would push hard to get a referral and really get it checked out fully. I kick myself for letting it go on too long, thinking it wasn't that bad and maybe she will just get better in time. We've still got a long road ahead of us and no guaranteed answers but at least I now know what we're fighting. If I've upset a few people along the way by being too pushy then, for my little girl, it's worth it.

Sorry, that was a bit of an emotional rant but meant with best intentions.

Best of luck.

x

2 likes
Reply

School trips are a minefield. Would echo what the others here say though, it really isn't as uncommon as your son thinks so no shame at all in talking to the school but that's easy to say and difficult to convince a 9 year old! Rather than try for the cure (which realistically is unlikely before March), could you work with your son to find a way to manage it? My daughter still uses pull ups at night and with baggy PJ's they aren't obvious. Could you send your son with enough PJ bottoms for each night and a Pull up already inside so that they are not obvious? Or talk to the school about letting him get changed in the bathroom? Worth checking with them if they do breakfast in PJ's or anything similar so he's prepared for it (ours do breakfast one day in PJ's as a treat!). Best of luck and I hope you can convince your son to go, he'll love it when he gets there..... xxx

2 likes
Reply

Hi,

I know exactly how you feel, my 10 yr old son is the same. He is a happy, healthy young boy with a very caring and sensitive side. We have also tried everything you have. Currently on oxybutinin 3mg three times a day. Been on this since Oct and it has had a huge positive impact on him, however there are still odd nights he wakes up wet. We were told previously he had an over active bladder. He had tests only last week that shows he has dysfunctional voiding, which means his bladder doesn’t totally empty when he goes to the toilet. After some persuasion it was agreed my son would be referred to the Evalina children’s hospital in London to do the same tests again but off the oxybutinin for a week before, then to compare the differences (if any) and go from there. It was decided after the second test is done to then review medication/treatment. Currently waiting for this referral to happen.

My son also has a school trip coming up in July (4 nights). We need to make the decision in 2 wks whether we pay the balance of £450 to go. The issue is my son will not wear any form of pull ups/ protective absorbent underwear in front of his friends. (Even if it is under his PJ’s). At the same time I know he would be mortified if he had an accident, but really enjoy the trip. Have thought about telling the teachers but even if they do go in an hour early to wake him, without waking the other children how do they sort out a wet bed etc?

I really feel for you, and I know how very stressed out I am just thinking about this school trip. I feel so torn, let him go and risk being humiliated by the other boys if he wets the bed? Which could have a massive psychological impact in the future. Or he doesn’t go but misses out on a wonderful opportunity?!

Bigs hugs from a mummy in the same boat!

1 like
Reply

Sorry to hijack this thread a bit but I was interested to read that your son (like my 6 year old) has been diagnosed with dysfunctional voiding.

We have been told there is no treatment but I have read online that the Evelina offers biofeedback training for this.

Would you mind starting a new thread to update us once they have reviewed his treatment plan, as I would be so interested to hear what treatments they can offer. Am planning to push for referral there too. Thanks.

1 like
Reply

Hi

I’ve just gone back and read your previous posts with your sons cystoscopy. This hasn’t been mentioned to us at all. Is your son on any medication? We were told my son had a much average thicker wall (they actually compared it to a man in his 50’s). Also his bladder was small and contracting to empty without being full - overactive. It was then they prescribed oxybutinin which has helped significantly as it allows the muscles to relax, bladder to fill and stretch.

I do have a concern with this medication due to its link to dementia. As I keep being told this was a research project done in the over 65’s. My argument is there has never been any research that has followed children through from young into older age, so until they can prove otherwise this doesn’t wash with me! I let them know this and have told consultants they will need to review my concerns and his medication very shortly. As a positive though this medication has helped dramatically.

Once we have our referral to the Evalina and we know what the next stages/tests are I will up date. Have been told this could be at least 6-8 wks just for the first stage referral and to repeat the test off the medication.

I don’t know too much about bio feedback but have seen it bounded about on different sites, so will be doing more reading on this topic. Good luck!

1 like
Reply

My son also has a thickened bladder wall - we were told that is fairly typical in children with various urinary problems, so not specific to one condition. He also has a slow urine flow and incomplete bladder emptying, indicating a bladder outflow obstruction. This causes urine to relux back up his ureters and collect around his kidneys. The cystoscopy ruled out a physical obstruction, and so that leaves “voiding dysfuction” - a failure of all the necessary muscles to co-ordinate correctly to allow the bladder to fully empty.

He has never been on medication, as they needed to investigate the incomplete bladder emptying first. One more junior doctor at the hospital did at one point suggest that children can often develop a kind of secondary overactive bladder as a result of incomplete bladder emptying, because the bladder wall keeps getting signals that the bladder is not empty and so goes a bit overactive in an attempt to try to empty.

After the cystoscopy, I asked the main consultant whether trying oxybutynin would be appropriate (I was thinking of this secondary issue, as my son does need to wee very frequently, and with urgency), but he said that they did not want to relax the bladder wall muscle in a child that was retaining urine, as it could cause a greater degree of retention.

He said there was no treatment available and that it would just be a case of waiting to see if he grows out of it! In the meantime, my son has an MRI scan next Sat to rule out neurological conditions which could be affecting his bladder, but I am told that it is likely to be normal.

My own research led me to read a few papers which suggested that biofeedback therapy is helpful for voiding dysfunction, to teach children how to voluntarily relax their own pelvic floor muscles when they need to pass urine. Then I found that the Evelina does offer this, so if the MRI scan is normal, I will be requesting a referral there.

I think I posted a few useful links elsewhere on this site - will try to re-post here.....

Reply

Useful article explaning overactive bladder and voiding dysfunction:

healthunlocked.com/api/redi...

(You may need to join the site)

Reply

Just realised from reading this article again that the terms “voiding dysfunction” and “dysfunctional voiding” are confusing. The former is more of an umbrella term for OAB and other conditions, of which the latter is one such condition.

Reply

Thank you so much for all the information. What a wonderful website. I've had more support in the last couple of days than in the last five years!! You're all heroes - thanks you.

1 like
Reply

Article about biofeedback trainng for voiding dysfunction:

healthunlocked.com/api/redi...

Reply

Factsheet from Evelina Hospital about the biofeedback training they offer:

evelinalondon.nhs.uk/resour...

Reply

After reading the biofeedback. It makes sense as to why the consultant has asked my son to sit down to go to the toilet. This relaxes the muscles and stops some muscles acting against the contracted ones. He has also been told that after weeing he should continue to sit for a while longer and then try to wee again. This is all well and good, but my 10 yr old will only sit on the toilet at home. He refuses to do it at school or in public places 🤦‍♀️😫

1 like
Reply

Yes, I can’t get my son to sit down either - he’s always in too mch of a hurry. But I think he would love to play a computer game controlled by his own muscles!

Sorry, I fogot to comment on your dementia concerns. I have heard that but have never researched it myself as my son has not been offered medication.

But I know there are other options -tolterodine and solifenacin. I don’t know much about them though.

Reply

We’re in Oxfordshire and PTNS is not automatically offered currently to those who reside in this county (pretty sure they have a child who comes in for the treatment who doesn’t live within the county though?!)

The GP has to go through a lengthy process to apply for the funding for my son to receive it

Another parent on this forum has mentioned their child receiving TENS treatment alongside medication but this is t an option offered where we live!

1 like
Reply

I plucked up courage and went to see my son's teacher after school yesterday, to discuss his problem and to make arrangements for the school trip in March. I have to admit that it went much better than I anticipated. Apparently another mother had already seen her about her son, who also wet the bed. She suggested that she would look after his pads and that he could put them on in the teacher's area at night, under the pretence that he was getting some medication and do the same to take off his wet pad in the morning. If he wore a dressing gown and baggy pj's, there would be no chance of other children noticing. She said that they always have one or two of the children wet the bed and that they would much rather know about it in advance, so that they can try to help and save embarrassment. When I got back to the car and told him what we had said, you could see the weight lift from his shoulders! He was delighted that he wasn't the only one and hopefully he can now start to look forward to the trip. (I will still worry though!!).

2 likes
Reply

I am happy you came with a good solution and you son does not have to miss out

Reply

how did the school residential trip go for your son out eleven year old is going on his tomorrow and is taking drynites

Reply

He got on very well as his teacher was brilliant. As it turns out there were two of them who needed pads. They went to the teachers accommodation wearing a dressing gown, to get 'medicine'. She gave them their pads, which they put on and then went back to join the others. In the morning, they did the same to take them off again. None of the other children suspected a thing and he had a thoroughly good time. I can't say it wasn't stressful, but he is glad he went. I really hope your son has a wonderful time and that he gets on ok.

Reply

How did your son manage on his school trip last week? If you were anything like me, it was as stressful for you as it was for him. I spend the whole week worrying when my son went away in March!!

Reply

it turned out there were two other boys in the same boat as my son and they would go to the bathroom to change in and out of their drynites he also had tena guards in his underwear for the daily coach trips as a precaution which he was pleased to have as he wet a little every day on the coach trips yes i was concerned how things would pan out for him but it all went well a few boys found out and got told off for a bit of teasing the first night there but they soon stopped we did put his sleeping bag in the wash as he leaked a bit on the last night over all he had a good week thanks for asking

Reply

I am so glad that he got on alright. It's good that he wasn't the only one, as I'm sure that having others in the same position definitely helps. It seems that despite our concerns, teachers and camps are pretty well informed about bedwetting and child continence problems.

Reply

yes our school is good with dealing with bedwetting... the boys seemed to bond over the week

Reply

You may also like...