DD10 still wetting and soiling daily

[endingintiers]

I am pulling my hair out with my youngest, DD10. She still wets and soils herself daily. She is due to start secondary school and I am terrified for her if this continues. She was under a toileting clinic for years (before it shut down), they did all the tests and said it was behavioural.

She has ADHD, which we finally got diagnosed last year and hoped with meds she would notice urges more but it has not got any better. She often sits in soiled clothing and lies about it, despite the fact everyone around her can smell it.

She has a water bottle with motivational lines to encourage her to drink more (doesn't use, only drinks apple juice). We have bought fun bath and shower stuff for when she is dirty, but she won't clean herself up. She refuses to go to the toilet when we're out / at bedtime / when she wakes up so often wets the bed or wees on the sofa. She can be very defiant so it's hard to enforce going to the toilet, especially as her screaming and shouting upsets our other neurodivergent child.

It is causing a rift between me and my partner because I think he is babying her/choosing the easy option by ignoring it when she's dirty and he thinks I'm being confrontational (I told her she would have to start washing the bedding/sofa covers herself if it's because she chose not to go to the toilet).

Any advice?

I think an OT assessment by an OT specialised in sensory integration therapy might help.

If there's no physical issue then it does sound like it might be sensory.

Although really bad constipation can I believe cause overflow issues like this.

Have you requested an ECHNA? If not, I definitely would as secondary are more likely to help you if that's in progress.

Has she had any kind of therapy or psychological help other than the ADHD assessment?

I wonder if the PDA Society might have a useful resource.

eric.org.uk/help-for-you/

www.pdasociety.org.uk/resources/toilet-training-and-the-autism-spectrum-asd/

Look at a referral to the continence service. In some areas, you can self refer. If you can’t the GP or school will be able to.

I second a sensory OT assessment.

What support is the school providing?

www.awhingamatua.org.nz/articles/pathological-demand-avoidance-syndrome-pda-and-toileting#:~:text=Children%20with%20PDA%20find%20certain,they%20can%20to%20avoid%20them.

The resources seem to be aimed at slightly younger kids but may be useful.

Regarding your DH, SEN issues are very stressful for everyone and it's really common in my experience for dads to be avoidant and dismissive.

DH and I had some success in terms of getting on the same page with NVR training.

(Disclaimer - we don't have your particular issues but we had other ones, just as severe, so I sympathise).

I wonder if you might post again in the Education general thread (so more people see it) asking if there are any special school staff on here. They'd be likely to have relevant experience.

I also wanted to add that DD may not have control over this and may not know why she's doing it.

It's really hard but try to remember she's not doing it "at" you.

Did anyone in the wider family have similar issues as a child?

Firstly, tysm everyone for your replies they’ve been so helpful and I am reading and considering each one carefully. Will reply to each one in order.

My partner is managing her CAMHS appointments so I’ll get him to ask for an OT assessment by an OT specialised in sensory integration therapy.

She is probably constipated again although we did several clear outs in the past and it continued so it might be a mix again.

I’ve never heard of an ECHNA so will look into it

Nope, no therapy or psychological help other than meds for ADHD

Eric we literally lived and breathed that advice for years when we were potty training. I can see theres some stuff for older kids I didn’t look at, so I’ll read - although it looks like it’s more about telling people (and very selfishly I want something on how to make things better by going to the totiler and drinking water). I did a short training course for parents and that’s how I recognised her wetting was due to a compacted bowel. It does signpost a lot of support groups so I will work my way through that.

I’ve purchased the toilet training with autism book mainly because it has a chapter on PDA and I think that will be relevant.

She was under the continents service for 6+ years until it closed down and they took her off the books because it was behavioural and they’d given is all the tools

Primary js great she has toilet pass, use of toilet with her own stuff to get changed etc. can’t fault them.

Thanks for perspective on dads being avoidant, I probably need to be less harsh on him and realise it’s his coping mechanism. We are really stressed and have loads to juggle what with work, competing needs of kids and so many appointments for them both.

I bought book on NVR research for my eldest with ADHD and it was really helpful. Need to a) refresh and b) get partner on board.

Will post on education board. - I almost did but then worried about people not getting the significance of ADHD related behaviours.

And yes I need to remember it’s not her fault/ about me. The oppositional behaviour makes it easy to lose sight of this fact sometimes.

All of my kids have had bowel issues at some point and needed investigation, hers have gone on the longest. Older one has recently been investigated for colitis. I also had them problems with soiling when I was a primary aged child and have ibs symptoms myself now..

think that’s everything answered, thanks again!

www.ipsea.org.uk/pages/category/education-health-and-care-plans

Your primary might be supportive but they have been really remiss in not helping you get formal support in place before the year 6 to year 7 transition!

The NHS doesn't do sensory OT. You would need to pay for that yourself.

These are the people we used:

www.childrenswellnesscentre.co.uk/

I haven't used this charity but they are often recommended by a poster on here for help paying for assessments:

www.parentsinneed.org/getting-help/

With all 3 kids and you yourself suffering issues in that area it does sound like "behavioural" was a complete cop out!

Some areas commission sensory OT on the NHS. It is worth checking if your ICB does.

If you go private for a sensory OT assessment, make sure they actually have training, qualifications and experience of sensory integration. Not all do. And if there is the possibility you will request an EHCNA, make sure they have experience of writing tribunal standard reports in case you need to appeal.

Look at another referral to the continence service. Even if it is behavioural, DD needs support. There will be a continence service DC in your area can be referred to. It may be a different provider to the one DD used to see, but there will be one.

Speak to CAMHS about therapy too.

Following disimpactation, did you continue with maintenance treatment? Treating constipation isn’t just a short-term thing. It can take years for the body to recover.

That's interesting @StrivingForSleep I didn't know that was area dependent.

@Phineyj yet another aspect that is a postcode lottery. Although even in ICBs who do commission sensory OT, it is rarely the same as good independent sensory OT support can be.

In some areas who don’t routinely provide sensory OT via the NHS, they do provide it to some with the provision in their EHCPs.

Hi all, update for you:

• Saw hospital pediatrician (for something else but they focused on this instead) and undertook another disimpaction. Took over 2 weeks, not sure it was 100% successful but I couldn't stay home with her any longer. Went down to the highest maintenance dose. Now is still soiling a few times a day, sloppy ones, so I'm not sure if a) this is overflow and she's still impacted or b) the maintenance dose is too high. I could do another disimpaction in summer if needs be for a few weeks but I'm not sure if this is necessary and my GP is weird about giving me meds for this without hospital approval.
• Pediatrician also arranged a scan to check nerves in spine (?) but follow up is not until December.
• School took her away for a residential and were horrified how bad it was (a lot of the time the worst accidents are late afternoon/ evening / overnight bed wetting).
• Bought an air up water bottle which has increased her water intake somewhat (however has lost one already!)
• Asked CAMHS for referral to sensory integration - they said our local occupational therapy service don't offer it. Also said it was most likely physical (stretched bowel) so will refer her again to constipation service. Not sure if the hospital pediatrician outranks them anyway but let's see what comes through.
• Have bought timer watch with timers set to remind to go to toilet after eating etc so I don't need to hassle her/she can take charge of her own toileting. She has now decided she hates the colour, and takes it off / ignores it when it goes off.
• Have tried being much more positive about small wins (e.g. when telling me if dirty) and less critical in general. Very hard though when she's refusing all meds, refusing to go to toilet, and then sitting in dirty underwear for hours. But I am still trying :)
• I looked up the private OT mentioned above but they don't offer sensory integration.

I'm going now to work through all the suggestions here now, thanks again.

If you need advice on medication dosage and the GP won’t/can’t advise, contact the paed’s secretary.

For sensory OT, you could look at: Aniesa Blore, Diana Pierags, Mary Cunningham, Alison Hart, Julia Metcalf, Jo Woods, Bryher Hill, Nikki White, Holly Fenton, Victoria Cureton-Favager, Sarah Chierico, Dawn Frith, Claire Stirland. I have tried to post a selection from across the country, so there should be someone accessible.