5 year old bladder incontinence - I just can’t cope - ERIC

ERIC

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5 year old bladder incontinence - I just can’t cope

pickle2016 profile image
8 Replies

My 5 (almost 6) year old daughter has a serious overactive bladder. She’s been on tolterdoine for a year and drinks loads of water, wears vibration watch etc, but her problems are worse than ever. She never tells us when she is wet and will come back from school soaked through (and smelly) and seems unbothered but it. Today 4 full wetting accidents through to her trousers including one huge puddle and each time I needed to tell her to get changed. She’s otherwise completely developmentally and socially “normal”. Whilst I don’t dispute she has a serious overactive bladder I do think a lot is down to her, she says she wants to stop having accidents but she needs to take some responsibility for not sitting in wet, and going to toilet as soon as (ideally before) she start a dribble.

We are at a complete loss on what to do, it is seriously affecting our relationship with her, each other, and our family life as a whole. I got really upset with her today and feel so bad. Just don’t know if I can cope with no end in sight.

Has anyone tried a child psychologist/therapist or equiv on top of the medical/practical approaches with any success? I’m London based.

Thanks so much

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pickle2016
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8 Replies
pickle2016 profile image
pickle2016

Ps goes without saying that it is her that I feel that saddest for. Other kids have started to notice and comment at school, she isn’t allowed to sit on the carpet at carpet time in case she wets so has to sit on the floor next to it. Worry so much it’s affecting her emotionally and about possible bullying in the future

Hls494 profile image
Hls494 in reply to pickle2016

Not really any help to you but just want to say my daughter is 6 nearly 7 and we are in the same position. I really worry about how it will affect her mentally as she gets older. I really don’t think they have any control over it!

pickle2016 profile image
pickle2016 in reply to Hls494

Thanks Hls494!

I struggle because I see no end in sight and just don’t know whether to basically ignore all the wetting and stop trying to encourage her to take some personal responsibility, or whether to try to push her a bit towards her having some control over how she responds to it (I think wetting is one thing but sitting in it another). How do you approach this?

Also she goes through stages of being a lot better (never totally dry) and then much worse which makes me think at least some of it must be within her control, even if most it totally outside control….

I really don’t think anyone who hasn’t had personal experience of this has any idea how hard it is on the kids (and the rest of the families), when I think about a day of not having to push water/toilets/changing it seems like a fantasy day we’ll never reach!!

Hls494 profile image
Hls494 in reply to pickle2016

I could have written that post. We have tried everything cross/ignore/praise and nothing changes. We have good days and bad (1 accident up to 6, sometime damp sometimes wet) I make diaries but nothing to explain. I just feel like doctors don’t care

JamesParkin profile image
JamesParkin

Sorry to hear you're finding it hard to cope with your daughter's wetting problems, which are more common than you may think. If you are on Facebook then you may be interested in joining the parents' support group, Daytime Wetting in Children and Teens, which has nearly 1,000 members whose children regularly wet their pants during the day:

facebook.com/groups/6512332...

Daytime Wetting in Children and Teens Facebook Support Group.
pickle2016 profile image
pickle2016 in reply to JamesParkin

Thanks so much, I’m not on Facebook but depending on how tough things get I might join!!

profyaffle profile image
profyaffle

Hi Pickle - my DS is about to turn 12 and has had issues with daytime and night-time wetting since he started primary school. He would either come home wet (or it would be obvious that he had been wet and had dried out again) most days through primary. He smelled very badly. He would regularly sit and wee himself when he was at home sat right next to the loo. To be honest, for the longest time, he just didn't seem to notice and if he did he didn't 'seem' to care, despite being emotionally very mature for his age.

I feel your pain in terms of the frustration and anxiety it causes in everyone - it's not just your child who is affected but the whole family and it's exhausting, the obsession with charting drinks, pees is all encompassing.

If I am brutally honest, it was only really when DS got to Yr6 and secondary was imminent that we started to see a real change in how he handled things. Almost overnight he suddenly seemed to really want to fix things. In his case that means he is taking more responsibility for drinking enough (which is his biggest problem) and acknowledging when he has had an accident. He also finally became dry at night this Christmas. Tbh I suspect he probably could have been before, he just didn't want to deal with it.

He is also dyslexic and dyspraxic (two conditions which are often seen alongside bladder problems) and suffers from anxiety and I think that did play a role in how he handled things. We also struggled to get decent support from his primary school which also made things worse.

I've just read your post to him and asked him how he felt at her age and why he tried to ignore his issues for so long and he said he was just too embarrassed and upset to admit there was a problem or to ask for help. What he also said was that the phases where we tried to make him take responsibility just made him feel out of his depth and a bit alone with it all.

None of the above really helps for where you are now, I know. My son was never bullied for his issues, the kids were surprisingly understanding so I wouldn't panic about that just yet. In our experience Tolterodine is by far the best medication to be on (the others triggered severe anxiety in my DS) so I would be reassured by that too. I assume she's under an enuresis clinic?

How helpful are school being? Is she given unlimited access to the toilets at any time without having to ask permission? DS used to make a T sign at the teacher with his hands so he could leave the room without a fuss.

Are the toilets in a good condition, does she have any reason to be scared of them? I found out several years later that some kids had been telling stories about ghosts in the loos which had partly caused my son to stop using them and partly triggered his overactive bladder. They also redesigned them to be open plan and he used to panic about kids banging on the door and pretending to get in while he was having a pee. In the end we got him permission to use the staff toilets which helped.

You asked about therapy - DS has had psychotherapy and CBT for his anxiety rather than bladder problems. He found the CBT very helpful but I think he benefitted from being a bit older (10) when he had it and I'd worry that at the age of 6 it wouldn't be as effective. Psychotherapy is fun for them but you're basically paying £80/hour for them to draw and chat so I can't personally recommend that! A couple of other friends have had success for different issues with hypnotherapy though, so that might be something to consider?

I've written an essay, sorry! I think the one thing I've learned over the years is that less is more - the phases where we've basically decided to ignore it all, stop with the charting and obsessions and reduce the stress is where things have improved a step. And if I could have my time again I would have been much much pushier with school in terms of support they were offering and in ensuring that the teachers genuinely understood the issues and didn't think he was just being lazy.

Good luck and please be good to yourself - it does get better in time I promise!

pickle2016 profile image
pickle2016 in reply to profyaffle

I cried when I read your “essay” ( 🤣 I love detail), really is incredibly helpful, and having your son’s view is so valuable so thanks so much to both of you! So much of this sounds so familiar…

She is with a bladder and bowel specialist, Anne Wright, at the Eveline Children’s hospital, we are lucky to be in the area as think she’s one of the best and tolterodine was her first choice. It definitely helps with the “twitches” and notice a big difference when she forgets a day. Also trying desmopressin at night but not got very far as she got really upset one night when she couldn’t drink, will restart after half term.

Thanks for your tips re school, I’ve not been very impressed with them (though they do let her go to the toilet whenever she wants to). I was heartbroken when she told me she wasn’t allowed to sit on the carpet with all the other kids, and whilst I can understand why they wouldn’t want her to does seem mean and will inevitably draw attention. I don’t think there are issues with the toilet itself but will check! You’ve empowered me to arrange a proper meeting with the school and will ask whether they have any concerns re dyslexia or dyspraxia, but nothing been suggested so far.

So pleased your son wasn’t bullied, and that gives me comfort as definitely my worst fear with this.

Views on CBT/psychotherapy really helpful, will hold off for a bit.

Really appreciate you taking the time and so pleased your son has come out the other side, hearing that gives me hope!

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