Complex continence help please

[Sunbathingsloth]

I've name changed for this to better protect my daughter's privacy and I'll be vague/slightly change a few things, but nothing fundamental.

Daughter is 7 and has physical and neurological health issues following a head injury. She's under various hospital teams. No known mainstream ND but the neurological stuff can cause behavioural challenges and oddities, meltdowns etc. no cognitive issues.

She has issues with bowel awareness which are being investigated. She's apparently not constipated, but we see the expert soon so hopefully will get some better answers. To manage this best she does toilet sits, but she does have some (smallish usually) accidents on a daily basis, but also soils sometimes in a pull up at night. She's not dry at night either.

She's started to object to these but also avoiding telling us when she has soiled. Fortunately the timing of this (gets worse throughout the day) means it's rarely an issue for school. Sometimes she doesn't know she's done it, and other times she doesn't want to tell us. She lacks the dexterity to manage it herself, though could possibly learn if she wanted to. She doesn't. She's developing hang ups about wee and poo being disgusting, not letting us check and it means she's sitting in it (small amounts thankfully) for hours sometimes.

If she was a toddler I'd pin her down, same if she didn't have the cognitive awareness to make a.decision, but she does. She's also been subject to so many invasive medical things that I pick my battles with what I force.

She's starting to sometimes have wee accidents now too because she doesn't like going for a wee as 'its disgusting'. She can hold it for 20 hours plus, and it's not great.

I'm at my wits end with what to do. Persuasion isn't working, but it doesn't feel right to pin down a 7 year old with her history, and like it would breach the trust that she has me. I need to be her safe place for when we go to hospital etc. But I can't let her daily stay soiled for hours on end.

For reasons of privacy and dignity I can't discuss this with many people IRL. Help!!

Is DD receiving any MH support?

I presume DD has had an OT assessment, but did it cover sensory integration?

Have you/DD had any input from The Children’s Trust?

Is DD actively withholding for 20+ hours or is it urine retention related to her neurological issues? I think the answer to that influences the way forward for dealing with that aspect.

As the parent of a teen with complex physical, medical, psychological and developmental needs, including incontinence and trauma (has a PTSD diagnosis), I understand your reluctance to force the matter. However, for us, some things are non-negotiable for health reasons. That includes changing/toileting because sitting in wet or soiled incontinence products causes its own health problem, so we do force the issue. I appreciate everyone’s line is different though.

Has a wash and dry toilet been considered for the toilet sits? Would DD wee in the bath/shower, then wash straight away?

No to the MH support yet, but I think if this continues they'll need to do a referral. No OT assesment but physio for physical issues. The drs were reluctant to do anything about the poo/wee issues for a long time because of how much she'd been through, and hoping she'd grow out of it, but are finally staring to realise that there's an issue.

The 20hrs + wee is being investigated (slowly) but seems to be a physical issue with a psychological layer now on top.

I agree that it needs to be a non negotiable re cleaning, however hard it is. She wouldn't go in the bath, but thanks for the suggestion.

I think I'll have to be firmer on her, you're right. Maybe I'm just after permission to do so, and I need to be told that it's ok to do so. Thank you for that.

My reasoning is my DS1 would cope even less with the medical intervention that not changing him would lead to. Forcing changing (or dealing with the button he has into his bladder) is the lesser of the evils, even if he can’t rationally see that. I suspect your DD might be similar.

I would request MH support now.

And an OT assessment. I’m surprised that hasn’t already happened. A general OT referral is worth it. Not all ICBs commission sensory OT on the NHS, but if your area does or you can secure charity support for it or fund it independently, it is worth it.

Does DD have an EHCP? If so, sensory OT can be included in there even if it isn’t available on the NHS in your area. (Similarly, MH support beyond what is available on the NHS and without the need to sit on the normal waiting list can be in the EHCP.) If add doesn’t yet have an EHCP, has an EHCNA been requested?

No echp because the bowel issues don't emerge until afternoons and she's on a part time timetable. There's simply no toileting of any description in the mornings. Her educational needs are quite subtle I guess, or more precisely managed with effort from us through scaffolding we (and school) put in place.

I'm drowning in disabled kid admin at the moment so it's probably things I need to chase/sort etc, but I don't have the energy between not sleeping properly (because of my beautiful daughter) plus trying to fit in work. I need to find the time to be organised.

I think I'll ask for support from the continence team though, which may help (this was suggested last week by physio but they had no power to refer).

I can’t believe DD isn’t already under the continence service! That seems like such an oversight by the HCPs involved. In some areas, you can self refer.

I would request an EHCNA yourself. On their website, IPSEA has a model letter you can use. Although toileting needs/provision can be included in EHCPs, my reason for suggesting you request an EHCNA isn’t just about toileting. The fact DD is on a part time timetable further my point that on needs requesting.

Why is DD on a part-time timetable? Is it because that is all DD can manage or is it because the school is unlawfully insisting? Is alternative provision in place for the afternoons?

Would taking some parental leave from work help with the admin side of things?

It's at our request as it's what she can manage. School are pretty supportive but there's starting to be a gap in attainment which I need to get to grips with. I have access to specialist educational psychologist support for that. Thinking about it, the psychologist be able to offer help with the emerging psychological stuff so I could fire off an email.

I think because she's quite physically little and presents as quite young for ages, even doctors forget sometimes how old she is and treat her more like a toileting delayed 4yo. We've got an appointment next month which I'm hoping we'll make some progress with. Realistically she needs referring to some very very niche specialists which is exist but only in GOSH as far as I'm aware.

I think because I'm acutely aware of how lucky we are to have her and that she's in as good shape as she is, that some of the side stuff feels minor. But on a day to day level it's impacting her, and us as a family.

If DD can’t manage full-time school, you can request alternative provision (AP) under section 19 of the Education Act 1996. AP doesn’t have to be traditional education.

I would also check how the absences are being recorded.

Thanks. Alternative provision won't work with her though as she's upto her capacity in terms of quantity of work. I'm need to consider whether s hool at all is the best place for her at some stage,but I'm hoping the path ahead will make itself clear to us in time. Sorry, I know that sounds wishy washy!

For a minority of DC full time in any form isn’t suitable, but just so you are aware AP doesn’t have to be work. There is far more to the scope of AP than that. It can be therapeutic to support physical and mental health.

If you aren’t sure school is the right place, you definitely need an EHCP. With an EHCP, if it is inappropriate for provision to be made in a school, there is EOTAS/EOTIS via the EHCP.