Hi everyone, I've just joined the forum so thought I'd introduce myself and why I'm here.... after 3 years of unsuccessfully toilet training my youngest daughter I am waiting for a referral to the eneurisis clinic. I have tried EVERYTHING to get her dry with absolutely no success. I have spoken to lots of health visitors and the gp with no real help. Finally got referred to the hospital about a year ago and my daughter had various tests and scans that were all clear. We were then referred to the eneurisis clinic in june but the waiting list is 36 weeks.... I am tearing my hair out. School are finding it hard as she wets around 3 times a day and won't tell anyone when she's wet (she is the same, if not worse at home). They take her to the toilet every 20 minutes and she STILL wets herself 2 or 3 times. I am now seriously struggling.... Is there ANYTHING else I can do??????? I've just seen the padded pants on Eric's website, does anyone have them?I'm worried about her getting infections etc... But she's at school and I'm worried about her getting picked on for wetting herself......... I worry about taking her to places incase she wets herself, I feel like people judge me (and her) for her not being dry, and if one more (well meaning) person suggests trying a star chart I swear I don't know what I'll do....!!!
In short, I am broken..... Please can someone tell me I'm not alone.......?
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My heart goes out to you. This is exactly where we were earlier this year before finally going on some medication for what was a suspected overactive bladder. People do judge, but they wouldn't if they understood it was a medical condition, and there is no getting away from how bloody awful trying to go out anywhere is. I could never work out which was worst: other people's houses, restaurants or soft play centres! The poor kids have absolutely no control or feeling over things so it is just rubbish for them. I ended up using the dry like me pads (basically sanitary pads) and just switching those over, but we were little leaks rather than big wets. (It helped with the amount of washing if nothing else!) We were dealt with through our local continence team rather than an urologist so I suggest speaking to your GP to see if you can get an urgent referral there. They can then recommend prescriptions to the GP. They might be able to help you whilst you are waiting for the referral but have their own waiting list challenges.
And if you ever have a dark moment, there's a great thread on here about other people suggesting reward charts - we share your pain!!
Thank you!! I just found that thread!..... Ahhhhhh I feel my stress levels already reducing knowing that I'm not completely alone in this.... I will call the GP on Monday and see if there's anyone else we can be referred to, I'm not massively hopeful though as I had to beg for the current referral, (and answer endless questions about sodding reward charts!!) I may also call the hospital referral people and cry... see if that bumps us up the list a bit.... 😢🙄
Hi we have also been through the same 'dont worry she'll grow out of it' comments. After lots of appointments with our school nurse who mainly told me to make her drink, he suggested to measure her drinks and her wee over 3 days. It made everything very clear she had an overactive bladder needing to wee 26 times a day. From that day i went and bought her tenna lady from the chemist. I now have found 'Always discreet for sensitive bladder pad size 3 is the best. Goes in her pants in the morning and it gets changed at lunchtime and she actually comes home in the same trousers. She knows its not a nappy and still has to go to the toilet lots. She is now waiting to see the specialist but has started oxybutynin and she is 5yrs old. I suggest doing an input/output chart and going back to the school nurse who can help support u while u wait for your appointment.
Thank you for your reply, I will try and do an input output chart.... Our major problem at the moment is that she doesn't tell us when she needs the toilet or when she's wet... So I have no idea how I'd measure the output as it would always be on clothes..... Is there a way of weighing or something...? I am going to look into pads I think as I think her teacher is really struggling now (she was very confident in September that it would be fine - "we'll make a star chart for her!"), but she mentioned at parents evening that she had contacted the school nurse as she had never encountered this kind of situation....
My daughter was the same she wouldnt say when wet. To do the chart i got a potty and a pot and normal kitchen scales. We stayed in the house and she only wore pants all day i told her to say whenever she felt her tummy telling her to wee to shout wee i ran with the potty she sat and peed. I looked at her pants which were either little damp, big patch etc and put the pot on the scales, turned on the scales (dont add the weight of the pot to it) and poured the wee in and wrote the number in grams which is equal to mls. Also if her bladder is holding the right amount she should flood when wetting and it the wee should puddle on the floor, 5yr old bladder should hold 210ml my daughter was only holding around 70ml.
Hope that helps. I to was worried my daughter wouldnt be able to do it but she could if she really listened to every wee oh and they have to drink 1 litre of liquid (not including milk)
Glad we've made you feel a bit happier! It can be a lonely old place. Remember, the reason the waiting lists are so long is because sadly, there are so many children out there struggling with this.
One thought: try googling the name of your local area and the words 'children's continence service' - for our area and a couple other I tried it comes up with information about how to get referred and a direct telephone number. Certainly for our area a referral can come from any health care professional so you might be able to get your health visitor or school nurse to refer if the GP won't.
Thank you, that's actually a very good point about the waiting list... For some reason I really hadn't thought of it like that.... I live in Leeds and it looks like there is just the one place for referrals (which I am waiting for), but I will also speak to the school nurse and see if they have any ideas...
Welcome to our "merry" band.....!! Would echo Cupatea's suggestion to do input/output chart it can be quite enlightening. From what you've said about number of accidents and short periods between it may well be overactive bladder (which until my daughter was diagnosed I'd never heard of before but now know that there are loads of kids out there suffering and probably loads more that don't know it yet and still battling with star charts syndrome!!) but there are quite a few other options.
Word of warning though, be prepared for any generalist to completely ignore the chart if you try and show them. Until you get to someone who really knows their stuff they won't know what it means and will be quick to dismiss it.....but try it and people on here will be able to share experience and hopefully give you a bit more ammunition to fight your daughters corner.
On the "other kids picking on her", you don't say how old she is but my daughter is 8 and so far we've only ever had one incident of that type. Toilet problems are more common than you'd think so try not to worry about that too much.....easier said than done at times I know.
Best of luck and have strength, you are most definitely not alone!!
Thank you, my daughter is 5, so hopefully she'll be ok for a little while.... It's just kids can be so cruel... The thing is when she wees it is generally a LOT (I would actually say she probably wees more than she drinks, but I know that's not possible)... And it also smells extremely strong. Her teacher had commented on the strong smell too. We are trying to up her drinking, but it's such a battle.... I feel like I am relentlessly telling her to go to the toilet, change her clothes or drink... I'd just love to have a nice day with her... Just once!
Our daughter is 5 and we've seen lots of professionals: Gp ( a million times), nurse, continence nurse, paediatrician etc and haven't got anywhere yet.
I'm hoping our daughter might get oxybyutinin at some point. She clearly has an overactive bladder. She has frequency and urgency issues.
The urgency issues are the worse. She does now say when she needs a wee ( which she didn't used to) but the toilet has to be very near to get there in time. For example today she said she needed a wee whilst we were in a shopping centre car park. I ran with her to the toilets ( leaving my husband and other kids) and we didn't get there in time. At home she gets there and there's usually a tiny patch in her pants. If she's outdoors she has no hope! If there's a queue for the toilet ( even one person) no hope. At school as classroom is next to toilet she is not too bad, ( one accident per day usually - but I don't know if they always notice because her dress would be dry and only tights and pants would be wet) but if they do forest schools and she has one of those all in one coats on she can't get that off in time.
We've done input output charts and even though the amount we've made her drink has been the same the number of wees has ranged from 12-20 per day! I don't understand why!! 12 per day ( if one per hour roughly) is almost manageable but 20 isn't!!
I'm pinning my hope on oxybyutinin. Although I know someone with a 9 year old for whom it doesn't work and he still wets in the day! So I'm hoping it works for her! It's the urgency we need to calm down. The frequency too! But the urgency because she almost needs a toilet next to her and that's just not possible in real life!!
On my darkest days, I've considered putting her back in nappies but I don't want my 5 year old who is fairly tall for her age in nappies.
Thank you, I'm the same about nappies.... It would just be so nice to have a day where I didn't have to worry/think/ask about the toilet.... But until we work out what the issue is I don't want to put her in nappies in case it makes matters worse. One consultant we saw suggested it was probably behavioural and so I've been telling her off, but it has made absolutely no difference, and now I feel terrible as even her teacher now thinks there is more to it...
The thing is, I have no idea if she has urgency issues as I only ever know once she is wet.... Urrrrggghh.
We were asked to do it for four days ( not consequtive days) twice! The first time they then took no notice but this time the school nurse is referring her.
With our input output charts, we stayed indoors for the day and put her in pants and no trousers. One of us stayed in with her whilst the other took the other two kids out!! Staying in, we did lots of activities with her all day like craft and drawing, games etc ( so she got loads of attention!). Whenever she said she needed a wee we let her go on the potty ( obviously she usually uses the toilet) and then poured it into a jug we bought just for this! Then into a baby bottle that we bought because measuring jugs didn't go low enough ( her output can be as low as 40ml or up to about 90ml.) if we noticed her pants were wet we recorded how wet. The previous time we'd been told to weigh the pants but the recent nurse told us just to record drops/damp , wet or emptied bladder. Hers is always damp or slightly wet, she never has huge accidents. Hers are patches usually on route to the toilet because she can't get there in time.
We are now waiting for a referral to the continence team from the school nurse. We moved house in September and have only seen the continence nurse where we used to live.
The other thing is we have a gp appointment this week because our Gp where we used to live said she'd now have referred us to a urologist because it's been so long. ( we first saw Gp two years ago when she was almost three and she's five now and problem no better) so we are hoping the old Gp has written to new one here to advise that. She said she would.
We've never seen a urologist. The Paediatrician was too general and not specialised in this and fobbed us off with she'll grow out of it! Hoping urology referral happens.
Hmm... Right. We haven't done input/output yet. But I did measure 2 wees that she warned me about... The first must have been about 50ml as it was too low for the jug to measure, the second was 110ml... So she clearly is lower than she should be. She is never just damp though, she is wet (not puddle on the floor wet, but knickers, tights and trousers are all visibly wet). I will attempt a proper input output chart next weekend though. I just want to feel like I'm doing something about it... The waiting around and being fobbed off is driving me crazy! Even her teacher said how the school nurse had told her it was "normal"... But she said that in her experience, it isn't...
We used a little measuring thing for putting conditioner in washing machine! Never weighed clothes. They just said to note frequency of wees/accidents/wet pants and do 6 measures for output (i.e. not every time he needed to go) over 2 weekends but not 1st wee of the day.
I've thought on and off 'is it behavioural' but I'm sure it's not comparing her bladder to my other two children....
My two year old daughter ( 2 years, 6 months) wees about 5 times a day. My 5 year old wees 12-20!! My two year old, if she has an accident will have a big accident. My 5 year old has lots of small accidents on the way to the toilet usually because the urge seems too quick. My two year old can sometimes say 'I need a wee' if we are out and wait til we get to the toilet. My 5 year old says 'I need a wee, looks worried, sticks her bum out to try to stop it and then leaks on way to loo.
Comparing the two girls, I see the older ones bladder doesn't act like the younger one's.
Being fobbed off is annoying!! I've been fobbed off a lot!!
When we did input/output on average I'd say we had maybe 5 pairs of pants with a patch of wee (small patch) that wouldn't have been noticed through trousers but also maybe 2 wet trousers ( but a patch on trousers the size of a fist or something.) her accidents are like that. Enough that you need to change her cos she can't go round with a wet patch, but not big accidents.
One doctor once said 'well it's only a little patch' when she saw her wet, but even though it's little we have to change her and she shouldn't be having wet patches.
Well that's a whole other issue... My 6 year old is extremely wet at night and is currently taking desmopressin for it (not helping)... We were advised a month or so ago by the school nurse bedwetting clinic to stop pull ups at night for our eldest so that we could monitor the situation - At which point our youngest refused point blank to wear them too. Weirdly though she is dry 4/7 nights... Which is significantly dryer than our 6 year old (soaking every night)... I am flummoxed... I am also currently washing 3 or 4 changes of clothes for our youngest and bedding from 1 or 2 beds (plus all the normal stuff) every.single.day. and constantly swinging between "she is doing this on purpose", "she can't help it", "how long is this going to go on for??" Agh. Deep. Breaths.
I feel your pain. I've had times thinking my daughter can't be bothered. But now she usually tries to get to toilet and just can't unless it's really near. She leaks on the way.
I'm not looking forward to nighttime!
My son was dry in the day from two years, three months!! But at night we used to get him up about 10-11pm ( I know that's not advised) and if we didn't then he'd wet by 11pm but then be dry til morning. Now he's older his bedtime is about 9pm and he's doing a double wee then and is absolutely fine!!
The two year old has some accidents and some successes but only wees 5-6 times a day so I think she's fine, just needs to grow out of the accidents. Her bladder isn't overactive like her 5 year old sisters. If it was I would go mad!!!
My daughters wetting was 100% caused by washing her clothes in fabric softener ! I was tearing my hair out! I had this moment where I thought it might be irritating her! I rewashed all her underwear and bam! It completely stopped two days later! Went back to it a month later and it started again! Will never use it again on her clothes.
Hi. When I came across your post I couldn’t believe it as I literally could have written it myself. You are definitely not alone! I have a son who is 4 and a half and now at school. We tried 3 painful times to toilet train from age 2 but apart from the first 2 weeks of the first attempt he has never been dry. Poos are not so much a problem - although he does soil at some point each week - but wees are a MAJOR problem. I cannot ever remember having a dry day ever - and we are currently on at least 4 pairs of soggy trousers a day, usually a few more. He is not in the slightest bit bothered and would do nothing if I didn’t point out the wet patches. Even then he denies he is wet. When I ask him to go to the loo it is like I have asked him to jump off a cliff! A constant and v stressful battle. Behaviour can change like at the flick of a switch. We can be doing something lovely then the wet patches rear their ugly head and all hell breaks loose. This problem is infecting our entire family and I also worry about the effect on my eldest son, age 7. He quite rightly hates the conflict this issue creates. The words “I need a wee” don’t seem to be a part of my 4 yr olds vocabulary. Things are desperate and we saw a v supportive gp who referred us to the hospital. They rejected the referral. Tears that day. We are now waiting to see if the referral will be accepted by another hospital. I have tried to chase the referral as we have heard nothing in 6 weeks, but am struggling to get through. You feel so helpless as a parent. Doing anything as a family is a bit of a nightmare. When you said you were “broken” you took the words out of my mouth. I feel like hospital is only chance as school nurses in my area don’t see children with these issues under the age of 7. 🙁 at the moment feel in limbo - would be good to see any progress or momentum.
That's crazy that the hospital rejected the referral...!!? Did they give a reason? Our first referral came reasonably quickly once the GP finally understood that we had tried HUNDREDS of sodding star charts and they HADN'T worked (when the 4th GP mentioned reward charts I swear actual daggers came flying out of my eyes). The consultant we saw at hospital scanned her kidneys and bladder, and checked her reflexes etc which should rule out any major medical issues/muscle tone problems. It was once we got the all clear for those tests that it all just ground to a halt as they just said "its not medical, so it must be behavioural". Yes it may well be, I don't know... But I still need HELP... The school needs help. We need to know what we should/should not be doing/saying. Someone somewhere surely must be able to help us! It's only since joining this forum that I've discovered it's not necessarily black and white (medical or behavioural) and there could very well be other issues which means it may not be "deliberate" or "naughty".
I'm surprised the school nurse won't help.... Are they mistaking the problem for nighttime wetting? (that is over 7 here too).
Is your son's teacher any help? We've been really lucky and my daughter's class teacher is also actually the SENCO, and so once she established that this wasn't going to be solved with a reward chart, she got straight on the phone to the school nurse to enquire about help from a teaching perspective. I had called them a couple of times and not got very far, but once her teacher had called too, suddenly doors started to open and I wasn't just an overreacting parent who can't potty train her children (probably not what they were thinking, but that's how I felt...). Maybe see if there is a SENCO at your child's school, or speak to the teacher, and I would recommend speaking to.the school nurse again. I have rang ours 4 times and spoken to someone new each time, so you never know you might get somewhere with someone else.
Sorry I've rambled.... It's so good to know that we're not alone in this, this forum has just helped me no end!
Thanks so much for your response. Only just realised it was there! You talk so much sense. No reason was given for rejection of referral, just they don’t deal with “toilet training”!!!!!!! Grrrrrr!!!! This is WAY more than that! We do have a SENCO at school who I know well and who knows my son so will get in touch with her and also ring school nurses direct. I didn’t realise you could do that. X
So rang school nurse but because he isn’t 5 until July next year they won’t help. And even if he was 5 they said they would just provide basic potty training tips as they are not a specialist service. Perfectly nice and sympathetic but no real help. Said we were doing the right thing seeking a referral so looks like we are back to waiting on that. Suggested health visitor so have left a message with them and am also going to try and access a local continence service - although I don’t think our exact area even has one. School nurses weren’t sure either! Still - feels good to be a bit more proactive and trying to achieve something - even if i’m not! 😀
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