Our son is 7 and has never been dry in the day. Night times he is responding well to a buzzer from local continence clinic. He has plenty to drink and has had a scan to check if all is OK. No problems to report there. He does lots of tiny wees. As many as 20 a day, and we are constantly changing wet trousers when he doesn't reach the loo in time. Our nurse suggests next step as Oxybutynin. Would really value your experiences. Have you tried it with success? side effects? or chosen to try to make better capacity through building up holding on times? Thanks.
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MrsSquirrel
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Hello, I'm a bladder and bowel nurse specialist and it sounds as though the oxbutynin would be a good option. The way it works will help to gradually increase the bladder capacity but should help to reduce the incontinence. In terms of side effects, the main ones to watch for are a dry mouth and constipation so I would suggest making sure he has a good fluid intake. If it's problematic there may be other medication options. Hope this helps.
Other posters have said TENS training has helped. Do you know if this is available throughout the UK? It was not an option mentioned at our recent clinic. Thanks.
This is not something that I have heard of before but for adults there is a similar treatment that works well. I would guess that it does depend on the service locally as to whether it is provided.
I had a search on Google and found a powerpoint from Nottingham NHS. They ran a trial with 24 children and found that 3/4 of them improved or attained 'dry'.
Oxy seems to have a 40% chance of relieving symptoms, as far as I can see from a review of these types of medication by a university in the US in 2007. A quick search - not looked at more up to date material so far.
31 % increase in void volumes.
'mean number of episodes of incontinence decreased by 71%'
Looks effective enough, but potentially more side effects than TENS I guess. Article details percentages of most common side-effects.
'Agents for treatment of overactive bladder: a therapeutic class review' Kristen Hesch
No doubt that Oxy works for some/many but interestingly in conversation with consultant she described it as being old fashioned - the analogy she used was that it is a Morris Minor of drugs. Good, solid & reliable but not necessarily what you'd chose today.
Apparently, newer drugs are out there that may be more effective but because of the time it takes to get them to market and then on top of that the additional time it takes to get them licensed for children they are rarely prescribed. There is good and bad in that statement- good, that they take extra precaution before giving to our kids, but bad, because as a result it takes extra time and often doesn't get done due to cost so the kids miss out on what might be a more effective solution for them.
Oxy didn't work for my daughter and there's little else out there that's licensed so she's now on Tolteradine which isn't officially licensed for children yet.
She was on Oxy for about 4 months, now been on Tolteradine for about 5 months (combined with TENs) and doing well. Bladder capacity has gone from averaging around 100ml before she started the latest regime to now up over 200ml (unless she's got a poo coming......but that's a whole different saga!). Still daily accidents but definitely less of the mad dash, the odd dry day and even some dry nights too.
Bless her, she came down this morning with a wicked grin on her face, then told me she'd forgotten to put her drynite on before bed (Dad had put her to bed and he never remembers to remind her!)....BUT she'd not had an accident - hence the huge grin!
Posters have said this has been offered at Evelina Clinic (Guys Hosp) Just wondering why there are inconsistencies in treatment methods across NHS - have found this before. Doesn't seem logical.
Hi, I can relate. My 5 year old is doing input/ output charts and day one was 17 wees! Day two was 20 wees! Today is day three. One more day to do after that.
I've been changing wet clothes since she was two and a half! I know your pain! Although sounds like you've had it even longer.
Starting to actually think of putting her back in pull-ups ( after two and a half stressful years in pants).
We've seen paediatrician 3 times, Gp probably 15 times, incontinence nurse 3 times, health visitor, out of hours doctors twice ( when she was weeing a few times per hour!), community nursery nurse, practice nurse a few times. Nobody has helped yet. They ruled out UTIs, ruled out constipation ( bowel is fine), tried bladder retraining but she cannot increase intervals between wee. She gets a sudden urge, her face looks in pain, she sticks her bottom out to try to stop wee coming out and it comes out. She can get to toilet if there's a toilet within about a 10 second run! But the desperate urge can happen even if she's not long been.
I think I am going to put her back in pull-ups. She cannot control her bladder. If she couldn't control her legs she'd be in a wheelchair. People seem to think she should keep trying to do something she absolutely cannot do.
Our two year old ( not quite two and a half) has a normal bladder. Our five year old listened to her weeing one day and said "her wee doesn't keep stopping" my husband says "nor does mine, it goes until its finished unless I choose to stop it" our five year old said "you can choose when it starts and stops?!". Her wee goes start-stop-start-stop. She calls it 'farty wee' cos it spurts out suddenly. Stops and does it again.
Hoping someone helps her. Nobody has so far. They think she will learn!!! She's not potty training. She has a bladder problem.
My two year old does a full wee that flows, then can go between two and three hours til the next one! That's like heaven!!! So relieved!!
I wish doctors would take it seriously when someone has a bladder problem. I have an 11 year old, have fostered three kids, have a 5 year old and a 2 year old and have worked for years with children. I once was in charge of a room of about 20 2 year olds!! I know my 5 year old has a bladder problem, but they think I just can't potty train her!! I've potty trained and helped to potty train lots of kids. You can't potty train a kid with no bladder control at all. If a child was in a wheelchair nobody would say 'make them walk'.
I am cross that we've tried to get help since September 2015 and my poor daughter is still wetting and feeling rubbish about it. She's mature for her age. She was reading before starting school last month, rides her bike round s bmx track! Does cartwheels, monkey bars etc! She's bright and good at so much! She hates being changed all the time.
Last time we did input output charts the nurse refused to look at them as they were 'outdated' by the time she got an appointment!! I'm scared the same will happen again.
I wish doctors took parents seriously. I've cried at them, my husband has got cross, they've seen her wee every appointment with no control over it. Once she wet four times in an hour we were at the doctors!! ( appointment was late) and the doctor saw all the wet clothes and didn't see why that would be a problem to deal with!! Thankfully she only wees once or twice per hour now not three or four times!
It sounds like both of you are having a lot of the symptoms my daughter has/had and which ultimately (after similar frustrating visits to numerous health professionals) got diagnosed as an overactive bladder. Oxbutynin was what we tried first but didn't do anything. We're now under care of Evelina Hospital, Bowel and Bladder clinic in London and they've been fantastic. The consultant actually showed me the muscles surrounding her bladder twitching on an ultrasound. Because they were twitching constantly, whether she had a full or even the tiniest amount of urine in there, if she didn't manage to close her pelvic floor muscles quick enough she'd have an accident. Finally knowing this, all of what she's been struggling with made so much sense!
She'd had scans before but this twitch was never picked up because they were done with a generalist. It wasn't until we finally got to the Evelina that I really felt like we got some answers. We're now doing treatment to relax the muscles to enable the bladder to stretch and ultimately the hope (and we are seeing improvement) is that the muscles will stop twitching or at least reduce enough that she can then control it and get to the toilet. In 4 months we managed to almost double the max capacity of her bladder!
My daughter is 8 now and the diagnosis was only confirmed 6 months ago, my advice to you is to really push to get referred to a specialist bowel and bladder clinic (although I know that's easier said than done, trust me!). Generalist practitioners in my experience don't seem to understand this area. It may be that it's not the same as my daughter but equally I know I am kicking myself for not pushing harder for referral sooner and getting the help she needed. I knew in my heart there was a problem from around age 5 but it took me over 2 years to get to see the right people. That was 2+ wasted years of frustration and tears (from both of us!). Even knowing now what we're dealing with, it's not a quick fix but don't give up hope, there are people out there that can help, it's just a nightmare trying to find them but it really can get better.
AliStan, what is the treatment to relax the muscles of the bladder?
PoppyMum, what advice did you get from ERIC and the continence nurses?
Our nurse has said they want us to try the meds before any referral for more investigation to the urology consultant at the hospital. I hope the meds help. We seemed to have moved (fairly) quickly - a year or so is speedy given the usual glacial speed of NHS (not that I am knocking them, communication issues aside they probably do their best). Good luck to both of you. It's just nice to know we are not alone. Especially when dashing out of the shops twice in half an hour yesterday afternoon. The back of our local Sainsbury is well watered Don't get me onto the subject of lack of decent public loos. Red and purple smoke will start coming out of my ears.
I think Oxbutynin does relax but it didn't work for us. We are now using Tolteradine instead (which is stronger but I don't think officially recommended for children!) but have also combined it with use of TENS machine once a night on her back. I know not all clinics use this option from other conversations on this site and because we've only ever used it in conjunction with the medication I can't isolate which has worked or if it's combination that's doing the trick.
What I would say though is if you do find you need to do this relaxation strategy, we were warned that accidents potentially could get worse before it got better (not explained when we were prescribed Oxybutynin!) because by relaxing the muscles it doesn't stop the accidents, just allows the bladder to stretch. It is this stretching (as I understand it) that normally happens as a child grows, and when it grows, that is when they are able to gain the control. The improvement I know is happening for my daughter is because of measuring output but also slightly less of a mad dash to the toilet! We are still having accidents daily (although with the odd dry day finally starting to creep in).
Have you ever measured the output volume? When we started the most my daughter could hold was <130ml, some wees were right down to 50 or 60ml, BUT when we did diary last month she had a couple that were 250ml with most at least in the 100's. Consultant has set her a challenge to get to 270ml which is considered "normal" for her age.
Might be worth do a diary for a day before you start on the meds to see what volumes you are at and whether it then makes any difference.
Best of luck though, you are definitely not alone.....there should be an app developed that shows all public loos, I tend to plot my route around town knowing that we are never far from the nearest one! These are the things they never warn you about before you become a parent!!
yep, volumes here are between 30 and 90 ml - usually 40 to 50. So we have a way to go! Thanks for the advice on poss. increase in accidents. It's great to hear from other parents in the same boat.
12 wees ( that's better than the last two measuring days of 17 and 20 wees!) though she's not in bed yet. Hubby bathing her. I'd guess she would have one more yet.
Plus 2 wet trousers and pants, 5 wet pants ( wet from her needing to go and dashing to potty ( using potty as it's a measuring day). She's taken herself each time but the urgency is too quick! 2 damp pants, 2 dry pants.
We stayed indoors measuring til 4:45 but then ventured out! The last two wees/accidents were the ones where it went through to trousers and that's what happens if she's not in the house or in school. She needs to be literally almost next to the toilet.
Yesterday we went to a park with six other mums from school and their kids. Outdoors the accidents are bigger because she's not right next to a toilet.
The continence nurse and paediatrician thought bladder training would work and we could take her at intervals and increase the intervals. That doesn't work. Today the intervals are:
The intervals are random. The capacity is random 60-100ml.
They wanted her to have an alarm every 90 mins!!! Today the biggest interval is 65!!! Even 60 min interval alarms wouldn't help!!!!
I think she needs oxybyutin??? Surely?
We've bought padded pants at £16 per pair. Today she's been in normal pants as we need to know how wet she is.
She's been like this since taking her out of nappies two and a half years ago. I've sought help since September 2015!!
The pedeatrician was completely useless.
We are seeing a school nurse next week, but after a long list of professionals we've seen I can't see how that will help?
When we ventured out for an hour today she was wet when we arrived where we were going ( through trousers) again through trousers an hour later when we left. It makes going out too much stress. That's why I want her back in pull-ups til someone helps!
I feel your pain! Could you give her a continence pad in her knickers when you're not measuring? This has only just occurred to me for my two! (One of the boys has found it helpful, the other one hasn't)
Alistan, how did you get to the Evelina hospital? How do we get referred there?
We haven't seen a urologist yet. I want to be referred to one as the pedeatrician seemed not specialist enough in this. She ruled out constipation, we know it's not UTIs etc from many urine samples taken to Gp!
Did you see a urologist before Evalina hospital or is that where you saw one first?
It must be a relief to know why there's a problem. I spent ages thinking I couldn't potty train her! I must say I feel better now cos my youngest ( 2 years 5 months) is now out of nappies and wees about 5-6 times a day at the most! She does have some accidents but the fact she doesn't go so often and also her accidents are right down her leg ( the 5 year olds are always little patches) makes me know she's normal! My son was normal. He's 11 now. He trained at 2 years, 3 months. It's just the middle child who has a problem.
Our son has always done small wees (50 ml or so) and like your little girl, the intervals are mixed - sometimes 45 mins but often every 30 mins or less. If he's had a big drink he might go half an hour then go 10min, then 15min then 5min. I asked the nurse about interval training vs the Oxy. She said we could try - go to loo when feel the urge, but try to hold for 1 min. Once that is reliable, then try 2 mins etc etc up to 15 mins. Could take a lot of time, also tricky on the practical front (e.g. what about when they are at school?). She said that trying to do this with him was really asking the impossible. He just wouldn't be able to do it. Sounds very similar to your situation. Unless there is a reason they don't want to try the Oxy? I know there are some med conditions which contraindict. We have used pull ups on and off at night for years since he came out of nappies at 2 and 1/2. Kept trying, getting exhausted with being up and down 2 or 3 times a night stripping beds etc. Had to buy a washer/dryer in the end. Anyway, I guess what I am saying is keep pushing. Can you go back to continence team and ask for a second opinion or to trial the Oxy? Make them aware that the situation is taking its toll on the family. Ha ha - as I type son is dashing past on way to loo I think they hope they will magically grow out of it, but when you live with it for years you just know its not normal/developmental thing.
Forgot to add I went on an ERIC course ( I think it was springtime this year - can't remember the date!) and it was very helpful!
The morning they talked about the things to do to help train a bladder, drinking enough, ruling out constipation etc etc but in the afternoon they talked about what to do if none of the normal things work i.e. What can be wrong with the bladder muscles etc and overactive bladder etc etc. It was good to learn more about the bladder.
I know we are past the normal solutions i.e. Drink enough, rule out constipation, ( disempact if constipated - thankfully my little girls bowels are fine), try to train bladder and increase intervals ( we don't reliably make an hour here!!). I'm sure there is something ie overactive bladder with my little one. My little one has a certain face she pulls and she will quickly stick her bottom out because the urge is strong and sudden and she wants to get to the toilet. She doesn't want to wet! And usually she's let out enough to just soak the bottom part of her pants before getting to toilet. Sometimes they're only slightly damp. But if there's no toilet in the building ie shopping or at a park etc or even the wrong side of the supermarket then the wet patch is bigger by the time we are at the toilet.
The padded pants are great. Indoors they absorb enough. If she's not near a toilet she can soak through them and have a patch on her trousers.
My daughter just turned 5 last week and I think they don't give oxy til 5 so it may be she was just too young. Also because she is an October birthday she only just started school so I think they think preschoolers are still young and will grow out of it!
We've moved house since we saw anyone so maybe the county we are now in will be better.
We haven't actually started with nightimes! She's still in a pull-up! On Eric course they said sort bowel ( hers is fine), then sort daytime wetting, then nightime. But I think school nurse next week will say take her out of pull-up at night. She said the continence team here will insist on that. So that's gonna be fun!
Oh.. the Eric course talked about flow too. There are different types associated with different problems.
As in a normal wee flows and tails off near the end then stops. My daughters wee goes start-stop-start-stop all the way through her flow. She's started noticing that her little sisters wee just flows then stops at the end and hers keeps starting and stopping, which indicates something isn't right.
Just catching up on all the posts from later yesterday and few thoughts......
The start stop is also sign of overactive bladder I think. They did flow pressure measurements at hospital and from my non medical understanding...that really urgent spurt to start is the muscle spasm, if bladder not really full it then stops until the next spasm.
In terms of referral, the way we got to the Evelina was by chance but it was the peadiatrician that did the referral. She had her on Oxy and it just wasn't doing anything, so the conversation went along the lines of - Ped - "We could try *** drug instead, that might work", Me "You don't sound very sure", Ped "Well it works for some children, if they have overactive bladder" Me "Again, sorry but you don't even seem sure that she has an overactive bladder, so I'm really worried that you are the doing trial and error with different drugs", silence for a while the Ped "well there is a childrens bowel and bladder clinic at the Evelina that I could possibly refer you to"......well I've never jumped on a suggestion so fast in my life! Basically being a pain in the **** paid off! Still took 6 months to get first appointment but it was worth it!
I'd tried finding paediatric urologists before as often just urologists will not see children until they are at least 8. The only one I did find "locally" that took private patients was actually at the Evelina so don't know if it's an option but think Evelina do take private patients too, just not sure if that's in this particular clinic. Might be worth a phone call if you think it's possibility. Ridiculous that we should have to even consider it but at the time I was at my wits end and would have done anything to get some help.
Just to add to what the ERIC course said ie bowel, then day, then night. Our consultant absolutely said the same. If they can't sort daytime then why put yourself through the stress of night time too. We're still in pull ups although have had a few dry nights lately but it means we can celebrate a dry pull up and not be stressed if it doesn't quite work. Consultant has said next visit will be the time to start thinking if we need to do anything more....but that will be after 8 months of treatment to get daytime under control first.
Yes, our continence team said day then night. TBH I was keen to sort out nights as I didn't want to carry on forever with pullups/wet beds. So I was quite firm in asking to try the buzzer. Had mixed messages about pull up use at night. One paediatrician said it 'made them lazy', another that it was fine to continue - albeit with gaps where we could try to see if he was able to rouse and go to the loo/potty.
He's almost 8 BTW. Lucky we had kept a large potty we had when he was potty training as toddler. So we are about 3 weeks into buzzer use and it seems to be working. He does 1 or 2 wees on the potty next to the bed at night, and now often wakes to go before the buzzer sounds. He dislikes the buzzer (dyspraxia, and noise sensitive) and I think a part of his brain is now slightly more alert to the wee signals as a result! or teaching those synapses to fire up quickly at the exact moment of wetting - or a mix.
Saying that, we had a wet bed last night at half ten (typical time for 1st wee of the night). but then I emptied potty this morn and could see he had used it in the night. He's on a fold out bed next to us so we can de-activate the buzzer and change him (PJs are damp if he's wee'd a bit and set it off). We limit fluid after half 6 or 1 hour before bed. He sleeps so heavily, that the signal does not get through I think.
Daytime is still the same as ever - lots of tiny urgent wees and wet trousers. 4 times we had to pause the finale of Masterchef last night....
Anyway I feel like we are making some progress and he is pleased as punch that he is having so many less wet beds. Getting up twice a night is all too much like having a small baby - tiring to say the least. Add to the mix parents with long commute, tiring job (husband) and me with Chronic Fatigue...its a relief to feel like we are at least trying for a solution.
And at least now we have had the continence nurse say 'overactive bladder' I have something to say to teachers who have said things like 'He's putting it on just to get out of lessons/he can't possibly need to wee so much' etc. Just wish had had that explanation for the last 3 years of school to combat the crying wolf story.
They are going to ultrasound him to monitor progress of bladder stretching/holding more, at our local child dev. clinic which is just up the road. Handy not to have to treck off miles to a big hosp. If that doesn't work then we'll be seeing urologist at big hospital an hour and half away. So fingers crossed! Funnily enough, my sister wet the bed until age 7 - and mum tried buzzer with success in 2 weeks. I think he may always have smallish bladder as his dad is the same. He can't hold it - esp. cup of tea or glass of beer Apparently he had Oxy as an adult but it didn't work. Maybe there is more chance with a child as they are growing all the time?
A success-ish-start-of-a-journey story from the EVELINA hospital:
I would definitely second the others who have recommended the Evelina. I now have two boys (nearly 7 and 5) under Dr Wright's team. After 4.5 years and 3 years respectively of not being dry in the day or night, they have finally been 'diagnosed' with overactive bladders.
My oldest has been tried on oxybutinin (when he was under 5 years old) at several different doses, the higher of which caused a very dry mouth and cracked skin around his face and later desmopressin, neither of which helped. Having had my oldest under Great Ormond Street for about a year, we finally got him referred to the Evelina after we had great treatment with our youngest. GOSH had essentially told me: "take him to the toilet every 4 hours" as the treatment. Needless to say that wasn't the solution! Our last appointment at GOSH was equally unhelpful, and when I asked about if they treat with a TENS machine (as we'd recently been at the Evelina for our youngest), I was told that they didn't, and that bladder training and medication were the ways that that hospital treated the problem.
Now we are at the Evelina for both, the initial assessment was much more thorough than just a bladder diary by itself. The children have to drink several cups of water, making note of the volume; then when they need to toilet or are wet, they need to wee in a uroflow measuring device, then have a bladder scan to see what the residual volume is, then empty that in the normal toilet and then another scan to check any residual volume. And all of that three times. The consultant we saw was extremely thorough, asking about sleep, joint hypermobility etc.
So both boys are now being treated with a TENS machine for an hour a day - it's quite amusing to see them lining up for me to attach the sticky pads! My youngest has had the machine for 3 months, and it has halved the amount of accidents he has, and my oldest said, when he saw that his brother was doing better said, "I want to be dry!"
The idea of the TENS machine is that it strengthens the nerve pathway from the bladder to the brain with the electrical signal that's sent my the TENS machine, with a view to the parasympathetic nervous signals between bladder and brain becoming stronger and less scrambled. This should mean that the child is able to distinguish and understand the feeling of needing the toilet, which apparently at the moment they only receive the "GO NOW!!" signal, and then it's too late.
I cannot recommend the Evelina hospital at Guy's and St Thomas's highly enough! If you would like any more details, please ask - I'm more than happy to share!
Victoria
PS I think the best way to get a referral would either be for the continence clinic to ask for a referral or through the paediatrician. If you're under neither, then the GP might be able to but it's unlikely unless you're got a lovely GP!
Is the TENS treatment something we could try at home? I think its doubtful we would ever get to Evelina as far away and not got to Urologist stage yet (could be another 6 months to a year before that happens). Is it a machine as you would have for pregnancy? could it do any harm having a go?
I'd be slightly nervous doing TENS without professional advice. We have to use a particular programme setting on ours. They didn't explain why or what the difference was so afraid I couldn't say more than that as just know we use Programme No. 5! The fact there are different programmes though implies to me that they do different things but I guess it could just be different strength or something. Hope others know more.
The TENS machine has a special setting on it so it would need to be under supervision of the specialists. Same at AliStan - prog 5! You have to fill out a symptom and current strength diary each day and then revisit the specialist every 12 weeks. The TENS machines we have seem to have more settings than the consumer pregnancy/pain relieving ones.
Wow, can't believe I missed this thread a couple of weeks ago! So much useful advice that seems to relate very much to my son's situation (which I posted about in a separate thread yesterday. Will follow the updates from all of you with interest.
I'm happy for you to contact me for any info - I know how hard, draining and frustrating is to have these issues with our children and I'm happy to help/listen, even if it's just for your own sanity!!
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Can feel the happiness from here! 
Daytime weeing frequency 
Teenage son bed wetting 
Nine year old still wet.
