5yo dd still in nappies/pull-ups, feeling overwhelmed

[pooismymiddlename]

I was advised to move my thread to this section for more responses....

Please give me some reassurance, if possible.

My 5yo dd has some issues with her bowels and bladder control. She is still in nappies (pull-ups) and is under the care of our local children's hospital, but her next appointment isn't until April 2019.

She doesn't have full awareness of her bladder/bowel fullness, and although we tried to potty train her, as soon as my hypervigilance would wane, she wet herself all the time. She is on Movicol, 2xsachets a day (or often every other day, if I can't get her to drink the required mls) to prevent constipation. She was blocked up pretty bad about a year ago, but we've overcome that hurdle perhaps. She soils herself on this level of Movicol, but if I reduce it she won't poo at all.

I'm just worn out, and worried, and I don't know what to do. I don't like getting frustrated with her, and I'm not upset when she has a soiling accident, but she won't tell me/other care givers so she sits in it until she gets a rash. I know she can feel it after it's come out, even if she can't feel it coming out in the first place.

I feel so stuck. She's in reception, the teachers have been supportive, but I'm worried for her future, and I'm worn out with all the messes and just .... I don't know. It's just so tiring and upsetting.

She's also been referred for possible ASD, and I know that toileting issues are often common with children on the spectrum. Everything feels very insurmountable and never ending at the moment.

Have you looked into getting a watch that you can set timers for and it will vibrate as a reminder ie. Go to the bathroom. I understand you are probably feeling very frustrated but with technology so advanced these days there are a few watches tailored to children with adhd you should be able to find one that might suit your daughters needs

Thanks, bonnielassie1.

At our last hospital appointment, I was told they would post one out to us, but it hasn't turned up. I think I'll just buy one myself.

We had the same struggles with our dad. She started mainstream primary completely dependant on nappies, she had never used a toilet or potty. She would sit on the toilet but would just not wee on it. She was seen by the school nurse and she referred us to a bladder and bowel team.
We tried social stories and reward charts but she wasn’t interested.

Then she began taking her nappy off throughout the day, so I’d pop it back on at regular intervals to let her wee and then take it off as soon as she did one. Eventually she began asking for her nappy when she needed a wee, so by this time I knew she had control. This went on for ages and then 2 months after her 6th birthday she just did a wee on the toilet, with no prompting from us! She’s been bone dry ever since and now aged 7 and a half, she’s dry at night too.
She’s not as confident with pooing and sometimes she’ll only pop in a nappy but she’s gradually getting there and because she shows lots of signs of needing to go she rarely has an accident even with pooing.
She has been diagnosed with ASD and is now at a SEN school, many of her class mates are still in nappies so it’s a very common issue for children with ASD.

Thank you nancy. I hope we get a similar result - it helps to hear other people's experiences.

Just a small update.

Been to the GP this morning and asked for our referral to be pushed up - children in her class are noticing her in pull-ups though the teacher is very aware and preventing any noticeable chatter/bullying at this time. I did play up the issue with the GP however, and he took me very seriously and promised me he will be chasing up the referral today (after leaving a message on their answerphone while we were in the office with him).

We were also promised a wobble watch that hasn't materialised yet, so I bought her a cheap step counter that can be programmed to vibrate throughout the day - she is using that for the time being.

She can sometimes tell when she needs to go. She took herself to the toilet this morning. This is what confuses and frustrates me - why isn't it all the time? If she can do it sometimes, what is stopping her from doing it - if not all the time, at least most of the time?

@pooismymiddlename - "she can do it sometimes" - yes, this is what happens with all new skills. Remember when she learned to walk? A few steps here and there, then a few more, then toddling but still falling, probably still crawling from time to time because it's easier and finally, finally, walking almost everywhere and seldome tripping. And with talking? You don't expect a child to go from first words to sentences overnight! It's the same with toileting. Small steps, but going in the right direction.

True, true. Thanks for that reminder.

probably the sensations are stronger in the morning and the distractions less maybe?

not so tired, not so overwhelmed socially.

That's an interesting perspective, thanks!

just guessing, you know them best, but sometimes it helps to have outside perspective or suggestions, to pick and choose from. Hopefully not all of them will be fucking useless.

(can you guess we have just had our own sen difficulties and I am still pissed off?)

DD just did her school nativity play today - she did a marvellous job! - but is now hiding in her room having a cry because she was asked to move out of someone's favourite chair.

She has a snack waiting for her when she calms down.