Tearing my hair out!!!

[Chocolate-chicken]

Hi, I've posted a few times but now I just have no idea what to do...

My daughter is 5 1/2 and has never been dry. Poos were never an issue until she started school, but wees have always been a nightmare. After a great deal of greif we finally got referred to a paediatrician and after a soul destroying 14 month wait we finally saw her. In the meantime my daughter has had 2 disimpactions and is currently on a daily maintenance dose of 3 sachets of laxido and 15ml sennacot.

To be honest, i think I had been hoping that the paediatrician would wave some kind of magic wand so I'm cross with myself that I'm so gutted she didn't. Instead, my daughter has been diagnosed with a suspected overactive bladder and has been prescribed oxybutynin.

She has been on oxybutynin for just over a week but there is still no improvement and for the last 3 weeks or so we have been having regular poo accidents (we had had a good month without any accidents)... I don't know what to do. Could it be over/under medication?? The paediatrician had said that as oxybutynin causes constipation, we may have to tweak the laxido/senna but this all started happening before she was on oxybutynin.....

She has a care plan and school have been incredibly supportive and understanding but they are also starting to struggle with what to do for the best. My daughter is coming home most days red raw because she is refusing to tell anyone that she is wet/soiled (she is the same at home), she wears incontinence pants and pads to try and limit the issues, and has one to one time with the emotional support pastoral teacher, but NOTHING is helping ...

Every time I talk to someone about the situation I cry and when I start crying I can't stop, so I am worried that professionals just don't take me seriously....

I just don't know what to do.... We've been told not to make a big deal of accidents, and we are TRYING, but she is actively refusing to go to the toilet and drink... Am I allowed to be cross about that? We give praise and r rewards, vut they just don't work longterm. She's got a WOBL watch but ignores it now so even that's not working...

She is now in year 1 and I am so worried about people being mean to her about it all, she's so happy and confident it destroys me to think that she might get bullied.

Agh... Sorry I know it's a bit of an incoherent rant. I just don't know what to do....

[EHM39]

Hi there. I’m afraid I also have no magic wand but I just wanted to reply to you as I feel you need the support and I am in a very similar situation to you. My son has just started year 1 and also suffers badly from daytime and night time wetting and soiling. He too has a care plan, wears pads to school, now ignores the alarm to go to the loo at home and it is a general day-to-day struggle to see any positivity. He resists going to the loo too when I ask him. He is on a maintenance dose of 2 movicol sachets a day - and although this has improved his soiling with regular sitting sessions morning and evening on the loo - there is absolutely no change in the wetting. Our general paediatrician has done all they can do we are now waiting to be seen by specialists following referrals. What keeps me awake at night is worrying about his future. So anyway - I understand!!!

In terms of your daughter not telling people at school she is wet and being red raw - our care plan has set times my son goes to the loo and changes his pad (with the support of a TA) which he doesn’t resist as this is just part of his daily routine and they are carefully timed so he doesn’t miss too much. Would this work for your daughter, so she doesn’t have to initiate the loo visits, they are just something that happens during her day? Just a thought.

I am so sorry you are struggling and don’t feel bad about pinning your hopes on the hospital visit. You are human and this is about your little girl - nothing is more important. I get it. Xxx

[Helen36]

Not incoherent at all, and not a rant either ... I get it too! I feel so sad that my daughter is now year one and I feel like we are going backwards not forwards. Weirdly, my little girl has also started soiling again too, it started over the summer and since the beginning of school has been awful. Don’t underestimate how much could be new teacher/class/summer hols making everything unfamiliar.

On the oxybutynin - give it time. When we started it took about 6 weeks to see any noticeable difference. Then we upped the dose and since then we have had periods of dryness. Not perfect miracle but it’s amazing just have for a few weeks when it happens! This was the turning point in my little girls attitude to it all, she started to understand what needing a wee and emptying felt like and was much more willing to comply with trips to the loo etc. Hang in there.

On the attitude to it all ... it is SO INFURIATING isn’t it!!!! I sometimes manage to be patient about it, and sometimes fail epically. I wish I had some solution for this but I think all we can do is encourage the right behaviours as best we can, for as much of the time as we can manage it! Maybe try not to tackle it all at once and just focus on getting her to drink and then if you can get her accepting that, then get her focussed on telling you/teacher if she is dirty. One step at a time.

On the soiling I’ve just done a bit of a mini disimpaction again and things have improved but not perfect. The other thing we’ve done that has massively helped is switch our Senna to the morning rather than bedtime - this is making the actual poo arrive about 3pm which has been so much easier to manage. I think before it was in the bowel from the morning but she wasn’t going then which was pressing on the bladder. Maybe worth thinking about? I also wondered if you’ve tried Movicol rather than laxido - I have heard some people suggest there is a difference in how they find it.

I’ve been on the phone to our continence nurse a few times recently and one of them said that children’s bowel walls are really flimsy which is why they stretch from even mild constipation and can go all baggy from bad constipation. But the bowel wall will tone up as they get older and things improve. I liked this - a little light at the end of the tunnel xxxx

[Wagamama]

Hi,

My daughter had this. I’ve posted a few times on here about this... No one could figure out why she weed so consistently and I finally worked out that she was sensitive to fabric softener and it was causing the constant wetting!!! I tested this out three times to see if I was right and each time the wetting started again. Took me two years to work it out and she’s been dry ever since. Worth a shot.

Xx

[Wagamama in reply to Wagamama]

Oh and forgot to mention. My daughter was also a bit sore, which I put down to being wet. But I think it was actually the skin was sensitive and that was causing the wetting, not the other way round... xx

[MrsSquirrel]

Chocolate Chicken, I'm still here too - and as frustrated about the general situation. Loo refusal, wetting, slow NHS speed, glacial. Meds seem to not have an impact. At last consultants meeting I remained sensible and dry eyed, then fell apart in tears in the waiting room afterwards. I feel like a broken woman these days. Like you I secretly hoped they would have a wand to wave. Or at least show interest in how much it controls our lives. At least we get that on here. Anyway just a hug from a fellow mum dealing with the same troubles x

[Michelle33MB]

I don’t have much advice but just wanted to say you’re not alone, my story is almost exactly the same as yours.

My little one is in reception.

Was dry when she was first potty trained and then after a year the wetting started.

We tried oxybutynin but it didn’t really do anything so she’s come off that now.

Had all sorts of scans and tests and just keep being fobbed off by being told she’ll outgrow it and she needs to double void which is difficult with her being at school and so young.

She’s exactly the same with the fact she won’t tell anyone when she’s wet.

So everyday she comes home wet/damp and very very occasionally soiled.

I guess all we can do is keep going, keep pushing the doctors and keep researching as much as possible xx

It is so frustrating and heartbreaking though x