to ask if you've had a DC with an overactive bladder

[JonSnowKnowsNowt]

How did you get it diagnosed/treated and how did it go?

I think this is what is causing DD's (4.5) persistent daytime wetting, and am trying to get a doctor to pay attention, and not dismiss it 'because she's still young'. She is, but no-one else in her reception class has this problem and it's horrible for her.

Yup, spoke to school nurse in easter of YR, followed her phone advice then when that didn't help in a few weeks she referred straight to enuresis clinic. Diagnosed based on history, oxybutynin prescribed there and then. It's been a bumpy slow road since tbh but infinitely better than getting no help. Enuresis clinic is a something of a refuge where no one blames or judges DD or us.

Some on here might say enuresis clinic don't take them til 7. Daytime wetting is a much more urgent problem than night wetting and I don't think DD was exceptionally young there at 5.5. When DD was wet a lot she lost the ability to feel if she was wet or dry. Once you get to that point, it is difficult for her and us to manage and we need help.

I have a 5 year old who wets almost daily at school and extremely rarely at home. She's happy, not bothered about wet pants etc. she just doesn't want to use the school toilets because they're usually in a state by mid-morning. School have been pretty useless. It's extremely common for children not to want to use school toilets apparently.

I'm hoping she will grow out of it, to be honest. It's not something I can easily fix at home. I just have to remind her to drink at school and to go to the toilet (the staff did remind her for a week or 2 but aren't bothered at all now). It's very frustrating.

Disappointed, that sounds frustrating but I should think it will be a problem your DD will grow out of once she cares about being wet.

My DD is a bit different, the wetting happens at home at school, everywhere. It is quite random and can happen as little as ten minutes after she's been to the loo. It happens at least once a day and usually more. She's still in pull-ups during the night, but if she wasn't, she'd be wetting the bed several times a night. She doesn't seem to know it's coming, or even while it's happening, she only notices later that her clothes are wet.

Luckily school are being very sympathetic, but I want to get her help as soon as possible. GP was unwilling to refer because of her age, I have ended up getting a private referral but I don't know if it's to the best place.

I have a ds who had overactive bladder - didn't wet as frequently as your dd during the day, but was still in pull ups at night. For him, it was more of a dashing to the toilet suddenly, and needing to go frequently, luckily school were very understanding, and he was allowed to go when needed. He still wet sometimes in the day, up to Year 2. He wasn't referred to enuresis clinic until he was 8, and then it was due to the night time wetting. He did have oxybutinin - we found lyrinel (which is a modified release oxybutinin more helpful). He did outgrow the problem eventually, and now in Year 7 has been off the medication for a year and no issues during the day. He still wets at night about 5-6 times a year, but usually only when he's particularly tired/ill, and as his nightime wetting needed lyrinel, desmomelts and a night time alarm to sort out, it may not be due to the overactive bladder any more anyway!

thank you for info. Are there side effects to oxybutinin?

It could be that your DD has no nerve endings in her bladder, or that they don't work correctly. I fought for years to get DD1 seen for her constant bed wetting and sometimes day time wetting. She could go for hours and hours and hours without peeing and could sit on the toilet and not do anything, as she had no clue what it should feel like. She had constant urine infections, too. Finally, at about age 11, she was referred to a urologist, and they said if they had had her when she was young, she would not have had all the infections and the subsequent thickening of the bladder wall and increased bladder size. I was fobbed off as 'just the mother' - and i was right all along!

There are possible side effects to oxybutinin, we were warned about them - I think they included headaches, but can't remember. My ds didn't suffer any side effects though - he was absolutely fine. It may be something you just need to be aware of and if they cause a problem, try something else.

I was fobbed off as 'just the mother' - and i was right all along!

YY. This happened to me with one of my other DC - a completely different medical situation - and I am determined it WON'T happen to DD over this.

There is definitely something wrong. Her daytime wetting is not the norm - it's not happening (on the same constant basis) to the other Reception children, it didn't happen to my older DC, or friends' DCs.

Perhaps it will magically correct itself as she gets older. But why should she have to live with such an unpleasant situation for years until it does - or a doctor finally takes it seriously.

I have got a private appointment with a paediatric urologist next week (costing ££££ but don't care). Does anyone have any tips on what I should think about before the visit / ask during the consultation etc. ?

DD is just 7 and being treated with oxybutynin, with positive results. She had frequent daytime wetting in reception and was referred firstly to a paediatrician where we had a renal scan - pretty standard to rule out any of the plumbing being in the wrong place. Paed said if it didn't improve we could be referred to the specialist enuresis clinic. We struggled on for a year thinking it was improving, then when it went downhill again we got referred back.

One of the classic signs of overactive bladder is something DD has always done which is to crouch right down and wiggle around before actually making it to the loo, because the urgency is so great. Does your DD do anything like that?

The investigation the specialist nurse asked us to do was to get DD to wee in a pot and measure the output. I think it's compared to 30ml X age + 30ml, so for DD was 240 ml at age 7. If the average output over a week or so is much less than you'd expect for their age, that suggests overactive bladder.

Is she constipated at all? We had to deal with that for DD to make progress.

Night time wetting they will be more reluctant to deal with until she is older. But if it is overactive bladder, treating the day time problem should bring the nights along with it as the bladder relaxes and increases capacity.

I'd ask your private paed about a renal scan and any other investigations to rule out more serious problems. That done, I'd suggest you get an NHS referral back to a specialist enuresis clinic. The nurse we have seen is absolutely great, knows her stuff and lovely with DD.

Best of luck.

If GP not helpful you might try speaking to the school nurse team directly. Depends how it all works in your area.

Has your dd previously been dry in the daytime OP? I found the school nurse really really helpful.

Also I found the ERIC website really useful. Definitely worth a read.

My dd had an overactive bladder and therefore very poor bladder control all through primary school. They were very good about it and it was managed by her having drinks at regular times (no sipping throughout the day), going to the loo at every break. She was reminded by the teachers. She always had a little bag on her leg with clean pants, tights, socks and skirt in it to take into the loo to change if she needed to. They were good at managing his in the infants, not so good in the juniors. Dd didn't really care, and often came home a bit smelly and had to have a bath as soon as she got in, but no one seemed to notice thankfully. She was prescribed oxynutinin and then lyrinel when she was old enough to swallow the tablet. It worked extremely well for her and she stopped bed wetting as well but we found he side effects to be awful. One of the side effects is restlessness and this manifested in adhd type behaviours (she was a bit quirky/hyper/doesn't pay attention already and still is). We found it very hard to manage and she was hard work, one weekend we had run out of tablets and she was like a different child, so much easier to manage, so we decided to have a break from the tablets to see how she got on. She was OK by then ( about age 9) and was old enough to manage her poor control, as long as she drank plenty of water.
On a positive note she is now 13 and absolutely fine, has great bladder control and just grew out of it, although she wouldn't drink Coke or orange juice when out as they would send her running to the loo, but she doesn't mind this.
Have you been given advice about drinks? My dd was particularly sensitive to artificial sweeteners and so couldn't have squash, any fruit juice, or anything with caffeine in, including chocolate for years. I had years of dealing with this, let me know if you have any other questions. I think going private is a good idea, as it's so stressful and distressing when it's not being managed.

"Why should she have to live like this"

Exactly this. We are veterans at this now (DD is in y4) and for us it has become more of a long term management thing, but I think in a lot of children, the drug treatment does help "teach" the bladder to calm down. But be aware it's very much about behaviours she will need to follow - drinking extra water for example, or poo charts - as well as medication.

No idea on the private route but I found the school nurses superb on this, not only for the swift referral but for good advice. The more you can get sorted before she gets old enough to be properly embarrassed about it, the less impact it will have on her self esteem.

I have two
I actually have an overactive bladder myself which made picking up the symptoms and getting a urology referral easier

I went to the gp and thankfully they listened and referred kmmediatley

My DS aged 5 has this. We went privately to a urologist who prescribed oxybutynin. Unfortunately we didn't see a massive improvement- wetting frequency decreased slightly but we found the tablets made him very tired and grumpy, and he complained of headaches so I've just stopped him taking them.
We manage at school using the Dry Like Me toilet training pads- they've been a lifesaver. DS doesn't ever wet himself a lot in terms of quantity - usually the pad is sufficient to soak up any small leaks during the day. Therefore despite his problems he's never had to change trousers at school and more importantly no one has noticed as they just stick inside his normal pants.
However I am getting frustrated as I don't know what the next step is. I'm worried that it's not going to improve and don't know what option other than oxybutynin there is.

Wow, amazing responses here, thank you all so much.

DD has never been dry in the daytime and until about age 4 was a terrible "toilet refuser", it was a huge battle to get her to sit on the loo, so I put the frequent accidents down to a behavioural problem rather than a physical one. But in the last six months, it has become clear it's a physical issue: she is completely co-operative now and it is still happening.

I am not bothered about nighttime non-dryness, (staying in nighttime pull-ups is fine) It is the daytime issue that I want to concentrate on, though I completely accept that the two are linked.

I will ask for the renal scan, and also a constipation check. I do think that she was constipated (although GP didn't agree) and she's recently been on Movicol (at my request). This has had the effect of getting rid of her protuberant belly, but hasn't made any difference to wetting problem. I stopped the Movicol because I was concerned it was contributing to wetting, but now I don't think it was, so will ask consultant if we should re-start it.

I have read the ERIC website and spoken to their helpline which was useful, thanks.

I will look for those DryLikeMe pads, thank you. DD often wets profusely, so I don't know if a pad would contain it, but it might reduce the amount of changing needed (e.g. not right through her skirt).

DD doesn't really drink much except water - very occasional fruit juice (like once a month or so) and a fizzy fruit drink on birthdays/special occasions (prob about 8 times a year) perhaps a hot chocolate once a month too. No caffeinated drinks. She does eat chocolate though (not every day obvs) and loves it. I hadn't thought about things like that being bladder "irritants" but now you say it, I did notice when we were on holiday we stopped at a cafe, she drank a full glass of orange juice, and then wet herself 5 times in the next hour - I put that down to the amount she'd drunk but perhaps it was the acidity.

OP, I could have written this post myself a couple of years ago. Sounds exactly what we went through. DC stopped daytime wetting about 6 years old. Everything you are describing sounds so familiar. So just sharing with you what we think may have contributed towards it:-

1. constipation caused by stool witholding. Paediatric Continence clinic gave us the Bristol Stool chart and poo should look like type 4 (en.wikipedia.org/wiki/Bristol_stool_scale) We've been on movicol for years and yes movicol seemed to make wetting worse but we stuck with it as the hard poo can build up like a poo plug and get stuck in there for a long time (months). Meanwhile soft (new poo) still keeps coming out sometimes looking like the runs, making you feel that you should stop movicol, but actually you may need to continue usage (better to be advised by Paediatric Continance clinic - they were brill for us).
2. DC absolutely hated using the loo and going for a poo. She has very strong sense of smell and for some kids going for a poo just feels really weird. So had to make sure loo was a place she felt comfy in (air fresheners/books to read on loo to distract them/posters on wall). We practiced loo sitting 20 mins after meals to get her going regularly again. She would have to sit there about 5-10 mins each time.
3. She was diagnosed with SPD (sensory processing disorder). Couldn't really tell there was something wrong apart from her loo problems. So she just couldn't feel it in time to get to the loo in time. She would go from feeling empty to full in the space of 10 mins. We got her a vibrating wee watch from Eric that was set at 45 min intervals, then eventually to 1 hour. School were ok with this. Now she doesn't need it!
4. She's hyper mobile so even when she does feel it she couldn't hold it in to get to the loo on time as her pelvic floor muscles were not strong enough.
5. Not drinking enough fluids as she was worried about weeing self but meant her wee was more of an irritant. Vicious circle.
6. We cut out caffine (ie. chocolate). I'm not sure if it was just a coincidence but seemed to help.
7. not sitting there for long enough to empty bladder. She's always in a rush.

I believe DC was wetting more with Movicol as she was finding it harder to hold in her poo. In order to hold in poo you also have to hold in your wee. Just think about how hard it it to go for a wee and not go for a poo if your body is wanting to desperately wanting to go for a poo. She was really very determined not to go for a poo ever!!!

Good Luck OP. I know how hard it is. I really think they should give you a referral. We got one just before 5. I rang the continence service up as you can ring for telephone advice. They gave me advice and told me to go to GP to get referral to them for a face to face appointment.

That's really helpful thank you Bing. What do you use as treats instead of chocolate? Was just about to start buying Christmas chocolate!

One problem is that I can't find an NHS continence clinic for children in my local area - there must be one! The GP didn't give me any details, just said she was too young, which is why I went for the private referral.

I think going back on Movicol might be a good idea. I will wait till the referral next week and ask the consultant, but it is probably worthwhile.

Off to have a look at the Bristal poo chart now. (there's a sentence I never thought I'd use) ...

My DS has an overactive bladder and I was completely fobbed off by my GP. Eventually I saw a private doctor who diagnosed it and he was put on tolterodine for 6 months. This seems to have really helped and he had no side effects. Before the appointment they asked me to keep a bladder diary for two days (i.e. weekend) so that you can record how much they drink and how much they wee (have to do it into a jug though!) and timings / how desperate they were to go to the loo. It was obvious to the doctor from his results that his bladder could not hold anywhere near as much liquid as he should have been able to. He was older that your DD though but I do wish I had pushed the GP earlier and got it sorted out.

Looking at this thread I feel very lucky to have gone the school nurse route. Private doctors had never entered my head!

Happy to help. DC has more sweets now instead of choc. We have re-introduced choc but only a little bit. But then sweets could make it worse too.

Finding continence clinic for us was really tough. GP didn't know about it. School nurse didn't know about continence clinic (shocking as i later discovered that they work in same hospital on same floor!) I found out via a friend of a friend. And then i still had to google for months to find it! Where abouts are you location wise ? If you want PM me. I can give you the address and phone no of ours.

Prior to the NHS Paediatric clininc, we did see a Paediatric Consultant privately (not Paediatric Urologist though) and he only helped with advice on Movicol. The rest of it - wetting and fear of the loo, he really didn't have a clue. However, I think a Paediatric Urologist should be able to provide more insight.

If no joy there, can you see another GP within your surgery and say that your DC is getting really upset about not getting to the loo on time and ask for a referral.

I do not think your DC is not too young for referral for daytime wetting (but i can't remember what the age is). They don't worry about night time wetting until 7 years old.

Have PM'd you Bing thanks

You may have already tried these but:
Keep a diary for a week of all wetting and toilet use (will help at consultant appt).
Try double voiding (wee, wait 20 seconds, wee again).
Try scheduled weeing (buy a timer watch and set it for a bit less time than she currently goes between accidents and steadily increase the time).

I had this with my daughter (now age 6 and dry day and night) and my son (age 4) was diagnosed on Monday.

Both children have smaller than average bladders. When the ultrasound was done on my son it was 20cc which is tiny. It increased to 70cc after drinking lots of fluid but at this point he was leaking wee.

I saw a consultant privately. If you are near London/Kent I can recommend a brilliant consultant. We saw him on the Monday, my son had the ultrasound on the following Friday and then the follow up on the next Monday.

Things I was asked

1. Constipated - my children were not constipated so it may be worth being sure you've resolved that first.
2. Avoid acidic drinks especially black currant as this can irritate the bladder.
3. Keep a record of accidents over a week
4. Measure the output of wee over a couple of days.

I am hopeful that the Ditropan /Oxybutynin will help my son as much as it helped my daughter. My daughter was also on a low dose of antibiotic for a year which stopped her having recurrent UTI's.