Wetting and soiling, not getting anywhere with gp and paediatrician

[Michelle33MB]

Hello. My daughter who is 4 has been suffering with enuresis - daytime wetting for a year and a half now.

She had a scan on her bladder and they said it was fine.

She was prescribed oxybutynin and has been on it for 8 months although it doesn’t seem to do anything.

The last 4 months she started soiling daily too.

She’s not doing it on purpose and doesn’t like that it’s happening.

I told the paediatrician about this in July but she didn’t seem bothered.

Doctors feel her tummy all the time and say she isn’t constipated but I feel like there must be a blockage somewhere.

When she does go for a poo they’re quite fluffy/mushy/paste like consistency and they stink.

She used to go daily, sometimes twice a day but now it’s every few days.

The paed said she was going to repeat the bladder scan?? I don’t understand why when it came back fine before!

I feel like no one actually cares and that they all think she’ll grow out of it.

I’ve started keeping a food diary and started giving her probiotics too to see if they help or if it’s worse after certain foods.

Was considering going private if we can afford it because the length of time it’s taking is ridiculous.

She’s now started school and as you can imagine this happening at school isn’t ideal and she worries.

Breaks my heart seeing her go through this.

Does anyone have any thoughts or ideas or experience that will help or comfort us.

Sorry for the long post.

Thank you x

[Chocolate-chicken]

I could have written your post a year and a half ago, word for word, we had a bladder scan very early on which was fine and everything seemed to stall from then on ...... Sadly nearly 2 years on, we are no further on dryness-wise, but finally drs are starting to take us seriously. I have been asking for help since our daughter was 3 1/2, but like you, they didn't seem bothered and just kept saying she'd probably grow out of it. Randomly once she started school she started soiling herself too (never used to be a problem) so when we were finally referred to a continence team she was treated for constipation. This has been going on for 6 months or so, and after 2 disimpactions, a lot of laxido and sennacot, there is still no improvement with daytime wetting (although poos have slightly improved), so we are FINALLY being listened to. We have done a load of input and out charts with measurements and descriptions of everything going in and coming out (our summer holiday was a world of fun as you can imagine!) and our specialist seems to think the figures may indicate an ineffective bowel.... I have a paediatrician appointment next week so that's when hopefully I might get some answers...

Apparently normally daytime wetting is a sign of constipation (and soiling issues is a sign of that), so we have been told that drs should automatically treat for that first. It sounds like your daughter has been treated for bladder issues before treating for potential constipation...

It is so frustrating and soul destroying..... Unfortunately I don't have any advice, but sending lots of hugs ..

Xx

[Michelle33MB in reply to Chocolate-chicken]

Thanks for your reply.

Comforting to know other people are going through the same. But it’s horrible that it’s taking so long to get sorted. Hope you get some more answers soon. We have another paediatrician appointment next month so will definitely push more about the constipation to see if they’ll look into that being the cause. Which like you said, they should have done first really.

Xx

[Helen36]

Hello, just another person to say it’s the same for us too! Slightly different journey to get to where we are as we knew constipation was the initial cause of our wetting, but not much further forward unfortunately. The only thought I had is that on the ERIC website, there is a copy of the clinical pathways for wetting and soiling that show how constipation needs to be ruled out. - might be helpful to take to an appointment. A disimpaction was the start of a much improved journey for us on both soiling and wetting and now considering doing again as we are back to square one!

[Michelle33MB in reply to Helen36]

Oh is there?! Will definitely take a look and take it with me then.

Thank you.

Hope you get some answers soon too that help. Xx

[Helen36 in reply to Michelle33MB]

Thank you. One thing you could do before your appointment is a transit time test. Don’t let her eat sweet corn for a week and then give her some and see how long it takes to come out. This will help indicate if there is a blockage or if she has a slow bowel. Also keep a diary of all her poos - toilet and soiling - and note the size, smell, colour (how dark or pale brown it is) and then use something called the Bristol stool scale (on the ERIC website) to describe what it is like. If you can do this for a couple of weeks (ideally) or as long as you have before the next appointment it will really help them know if there is a blockage. In the mean time, I would also suggest trying to get her to drink some prune juice, just in case and it won’t do any harm!

[Michelle33MB in reply to Helen36]

That transit test is a good idea although she tells me she picks sweet corn everyday at school for dinner so may have to speak to the teacher about that.

I’ve just started to do the diary, on day 3 now, writing everything she eats and drinks too just in case it maybe a food intolerance.

Thanks for all these tips xx

[Piper2017]

All I can say is I feel your pain and frustration and you are not alone.my daughter is 4 years down the road of being constantly wet and I feel we are no closer to dry pants than we were on day 1-it seems to be a long hard road but I hope that one day we all see the light at the end of the tunnel!

until then keep your chin up and remember you are doing a great job of being a caring parent trying your best to help your kid however you can

[Michelle33MB in reply to Piper2017]

Aww thank you. Think we all need to hear that sometimes.

Can’t believe you’ve been going through this for 4 years!

Just worry about how long it will go on for and if other children will start to notice. She’s only in reception at the moment so they’re all unaware.

Hope you get answers soon too x

[Frustratedmum1 in reply to Michelle33MB]

Just take every day as it comes. As it is along journey.

[Piper2017]

My daughter is in her third year in primary school,a lot of kids have noticed her problem as she would often leak through her uniform she also has a special needs assistant that takes her to the toilet once an hour(kids quiz her as to where she is going etc...we told her to tell them she is helping with a job).i send her in with a bag of changesof uniform + pants with pads.we have recently got access to great pads that hold up to 250ml urine which has practically stopped leakages through uniform which is a big relief.it really is a hard road we are going to see a new specialist next month and I hope so badly that he has some new ideas to help her.

[Michelle33MB in reply to Piper2017]

My daughter has been leaking through her uniform too so she has to take a bag with extra pants and pinafores in. I tried her with incontinence pants before but she got lazy with going to the toilet then. I may try them again though now she’s a bit older.

It’s the endless washing and making sure you always have spare things with you wherever you go. I still have a portable potty in the car too because she gets the urges and bladder spasms so much.

Aw I really hope this new specialist can help you. Fingers and toes crossed. X

[Piper2017]

Yep the endless washing is hard and leaving the house is like a military precision... trying to suss out how far you are from a loo,estimating how many changes you might need of pants,trousers etc etc.....this forum is the only place I don't feel alone on this subject,at least here people understand

[MrsSquirrel in reply to Piper2017]

Just the same at our house - 3 pairs of trousers minimum to leave house with (and take to school). This year we bought 10 pairs of trousers for school. Plus the 2 x wet beds at night. Just contemplating getting him a duvet for winter (we use 2 or 3 blankets together that are easy to dry) but how to wash/dry it? Does anyone have tips for keeping duvet dry? waterproof protectors maybe?

[Michelle33MB in reply to MrsSquirrel]

My daughters back in pull ups at night and they’re soaked through by the morning but she doesn’t wake up or know she’s doing it at night. You can buy incontinence pants for sleeping in, so they look like boxers or knickers with a pattern on and they’re a soft material but have a bit of padding to them so they don’t look or feel like a nappy, that might stop so much leakage on all the bedding for you? And they’re washable too.

Other than that I’m not sure what else will help with the duvets. Sorry xx

[MrsSquirrel in reply to Michelle33MB]

Thanks Michelle. Asked paediatric urologist at apt recently and he said we could use pull ups if we want as there is no evidence that they delay night time continence (other paediatrican had told us otherwise!). Good to know as it had been a point of debate with husband who thought they might make him lazy about getting up for a wee at night (he will wee in pull ups and not bother to go to loo if he has them on during day - when we make a long journey for example) I think washable night time pants sound like a good option - he would perhaps feel wet and a bit more eco friendly than disposables every night! Will investigate.

[Michelle33MB in reply to MrsSquirrel]

Yeh she does the same if she has it on a little earlier before she goes to bed she can get lazy and will go in it. I think they find it easier than having to run off to the toilet every 20 minutes and worry about holding it and if bits are going to leak out. Hopefully the pants will make him think oh I best not wee in these.

From what I’ve been told day and night dryness is completely different but everything you read is conflicting isn’t it.

Fingers crossed. X

[MrsSquirrel]

Yes, been told we need to crack the reasons for daytime wetting first. Movicol and Tolterodine and diaries, diaries, diaries! Oh joy!

[Frustratedmum1]

It's so nice to know we are not the only ones. The whole issues of clothes, toilet stops is so hard to explain to other people.