Lost the plot with incontinent DD, so ashamed

[soupmaker]

DD has been incontinent for nearly 2 years. We've been to hospital, GP, HV and nothing is working. She soils and wets everyday and today I just lost it. I feel so awful but she came out of school again today filthy, wet and smelly. She had pads to help her keep mess to a minimum but hasn't bothered to change them making everything much worse. I have yelled at her, told her she is horrid and hosed her down in the bath before yelling at her again. She is supposed to be going off to see a friend and I have told her she can't, but feel rotten as I know the incontinence is not her fault. I'm just so fed up with dirty pants and wet clothes. We have gone through a supermarkets worth of pants over the last 3 years. I'm also 6 months pregnant which probably isn't helping.

So where do we go from her. I feel like I'm never going to be able to cope with DD and a newborn. I'm just so rubbish and want to just crawl into bed and weep.

We have a hospital appointment in 2 weeks but that seems like a lifetime away.

How old is your dd? How do you know it's not her fault? Does she have to change her own pads etc at school? It must be horrible for her being dirty and wet at school. Has she got a diagnosis? has she seen a specialist? It sounds very frustrating.

You've told her she's horrid and withdrawn a promised treat for something you acknowledge isn't her fault?! Poor little girl. That's going to have a negative effect, not make it better. How old is she?

Push for a referral to a specialist to rule out physical causes. I was that little girl once, but because my mum didn't push the issue with HCPs I was 24 before I got a diagnosis and 26 before I had the major surgery I needed to fix the problem - it really wasn't my fault you see, I had a very rare set of birth defects that weren't apparent without serious investigation.

Don't alienate your child further, you're going to cause her some very serious mental health issues if you treat her the way you've done today. Being pregnant is no excuse, and won't mitigate the harm caused to her. You're the one who should always be on her side, no matter what, never give her reason to doubt that.

DD is 5. The staff at school can't help her so she has to manage herself. She has been diagnosed as having an irritable bladder and constipation. The medication for her bladder also makes the constipation worse. She has a great diet and drinks plenty. No one had been able to tell us why she has these conditions. I feel so sorry for her but because for 2 days she hasn't changed the pads in her pants she is red raw and sore. It hasn't helped that we haven't been able to see anyone at the clinic for 6 months due to the nurse specialist being on long term sick. Sigh.

Been cuddling DD to reassure her and we've both been in tears. I just wish I could get back to being calm about it and get a solution.

You are not rubbish. It happens.
DS has various SN which include being incontinent. Even if he does ask for the toilet or agrees to going we have to change him. 14 years of wiping his bum!

I shout sometimes. I shout a lot.

What help does she have at school? You should think about asking them. Maybe then can remind her to use the look every hour.

The loo!!

And get some cavilon cream for her bum. It won't get rid of the current soreness but when that clears use it regularly. Its a barrier cream and doesnt interfere with the absorbing of the pad - the continence team here recommend it. Ask your gp to prescribe it.
( you can buy it from some pharmacies but its not cheap although you don't use much and a tube lasts ages.)

ask to speak to the senco at school. She needs someone to help her when she soils. 5 is little.

Argh fat thumbs. Absorbency of the pad

I can sympathise as DD was severely constipated until age 6ish and we had stinking overflow every day when she came out of school. Focus on the hospital appointment and just try to make it through until then. Once you get in there break down and make them help you. It's awful but sometimes you can't help but lose your rag, the smell, the dirty clothes the seeming inability to just help themselves (I know they're just babies really and logically you know it isn't their fault but it can make you lose all sense of reason).

5 is quite young to have to take a lot of responsibility and be so different to everyone else. I understand staff in school can't physically help, but could they at least remind her to go to toilet maybe hourly, and make her go and get changed at breaktimes. So that wet or dry, clean or dirty, she gets a clean pad twice a day at school as well as when she gets home. It might seem like a waste initially, but if it gets her in the habit of changing at school, and it becomes routine to her (and those around her), it will be more likely that if she feels a need to change at other times, she will be more comfortable going and changing (and certainly won't be wet/dirty for hours in the interim).

Yes you were wrong to shout, but you know that. Reassure DD that you know that - and that even grown ups get things wrong and have bad days. Maybe, in the context of the pg, you could talk about pads you have to wear and how important it is for you to change them (ok - not all the time wearing, but probably at times you've needed them and you definitely will in 3 months time). And that you will ALWAYS LOVE HER!!! No matter what.

And also reassure DD that you want to help her not have these problems. That's why you're getting her to wear the pads, and going to Drs to see what is causing it and how to help it.

But also talk a bit about how everyone is different to others, but different people have different types of differences. So DD might have problems with the toilet, others have problems learning to read or do sums (betcha she'll see someone in the class with those problems), or maybe others who can't eat chocolate or drink milk or eat nuts cos it might make them sick. Even talk about different coloured hair and eyes, taller or shorter, etc (physical things she can see) and how our insides can be different too.

Sorry, not meant to be epic, but while not having the exact same thing, a girl on our street has similar problems and we have different SN problems to face as well.

DD is 5. The staff at school can't help her so she has to manage herself.

I don't understand why the school are taking this stance with her, it is their duty to help her. I understand it's not easy for you but you need to save your anger for the school.

Thanks everyone.

Have reassured DD that i understand this is not her fault and that mum was wrong to shout and say mean things. We have always explained to her that her body is different to other boys and girls and that none of this is her fault, it's the sneaky poos and wees that are naughty.

I think I have been too stoical around health professionals up to now. I don't think they understand fully how hard it is to cope with.

I am going to go into school again. The staff are okay about it, but I don't believe they are proactive, just reactive to accidents. DD is so little and I feel very frustrated that school can't help her more, but they have been adamant that staff cannot clean her or touch her. Sigh.

I have an industrial sized tub of zinc oxide cream so her poor sore red bits are slathered in it. We've always used it as she still has pull-ups for night time.

DH home now and I've told him what happened today. I feel so much better for talking to him.

The staff can help her, they can touch her, they can clean her up. They are in loco parentis and to leave her to sit in her own faeces is neglectful and against the disability discrimination act.

How dare they just leave her to deal with it here sell, she is five! For gods sake some kids can even wipe their own bum when they are five, never mind deal with A major faecal incontinence incident! I cannot think of one five year old who would cope under these circumstances, my heart is bleeding for what she goes through. She must be so frightened of having an accident at school.

You must get some more support in place for her.

Agree that you need to establish clearly with school that your dd has a medical issue and she will need help cleaning up and that someone needs to check. Hat she goes regularly to toilet and should also check at regular intervals that she isn't wet or dirty. You should contact school nursing service to set up a meeting with school to discuss. Don't take no for an answer. Schools are allowed to help children but they will need to set up a system to do this.

I'm not sure it's right the school can take the stance of not helping her-she is only 5! All schools have an Inclusion Policy, and Must make necessary adjustments to accomodate any SN or Additional Needs a dc has-mental and physical. Your dd needs to be able to access the Curriculm like other dc. How can she do this if she is sore, wet & dirty? Is it impacting on other dc not playing with her 'cos she may smell?
Your dd has a dx of irritable bladder & constipation-these things by themselves are miserable-imagine what it's like having both.
You must write to your Head of Education in your LA & explain your dd's needs and how the school is not making adjustments for her. If it means a TA or a staff member responsible for First Aid has to help toilet your dd several times a day, so be it. She is far too young to have to deal with this herself. Our Primary school has a dc with Cerebal Palsy who cannot walk unaided. He is helped with toileting, so it can be done.
As far as home goes, you must keep telling yourself it is Not your dd's fault. She has no one helping her at school, so she is going to be wet/dirty. She will feel awful already, and shouldn't be worried about your reaction on top.
If the medicine for the bladder is making the constipation worse, tell the Consultant-ask for something different.
Finally, I'm not clear, how you did not know your dd had not changed her pad for 2days-does she not change them at home as well ? Is she worried you will shout at her? Poor dd being so sore. Please try & be patient, she is 5-a baby. Also, she may have these conditions for several years, there isn't a quick fix.

Sorry Bigpants, not sure I understand the question, but I knew DD hadn't changed her pad each day because I know how many she takes to school every day and for the last two days she has come home wet and dirty and must have been sitting in the mess for hours. She is good at telling us if her pad needs changed at home and can often manage to do it herself, but will ask for help if she needs it.

So far, the other kids don't seem to have stopped playing with her or teased her about it. In fact when she has had accidents in the play ground they have been supportive. But I know that this will not last forever.

We've tried to always make DD understand that this is her way of being different and to explain that to anyone who says otherwise. I feel so ashamed that in one afternoon I've probably set back over 18 months of being calm and relaxed about it all.

I never want to be like this with DD again and DH has agreed we need to speak to school and get support in place and really push at the hospital for proper support for all of us.

As a special needs co-ordinatior I am horrified about the schools stance. Please go in and rant at them, not your DD. They can and should be helping with a medical issue such as this, ask to speak to the nurse with responsibility for your daughter's school. A five year old cannot deal with this issue on her own in school. I hope you get some resolution for her soon.

Ds2 has fecal incontinence issues. He's starting school in September and they already have a plan in place for accidents in school

Your dds school simply isn't doing enough, even without cleaning or touching there are many ways they could be helping her... They are choosing not to.

{hugs} I've lost my temper too.... Ds2s issues are sensory, not physical, and I've been in tears at times. It is utterly draining and soul destroying scraping poo of a child several times a day.

Is she on movicol?

Does she have a care plan at school? The school are acting in loco parentis and as such they have a duty to care for your daughter, if this means helping her to clean and change herself after a soiling incident then they should do so.

Taken from an ERIC leaflet

Asking parents to come into school to change their child is likely to be a direct contravention of the Equality Act (2010) and leaving a child in a soiled nappy or clothes for any length of time pending the arrival of a parent is a form of abuse (Leicester, Leicestershire and Rutland Specialist Community Child Health Services).

And..

Legal responsibilities

The normal process of assisting with personal care, such as changing a nappy should not raise safeguarding concerns. Any member of staff who does not have a valid CRB check should not be involved with any intimate care procedures.

It is good practice for the member of staff who is going to change the child or carry out a procedure informs the teacher that they are going to do this. There is no requirement that two adults must be present and staff will need to make their own judgement based on their knowledge of the child / family (Including Me, The Council for Disabled Children, 2005), however if there is known risk of false allegation by a child, then a member of staff should not change a child on their own.

All schools and settings registered to provide education will already have a policy relating to hygiene and infection control as part of their health and safety policy. This is a necessary statement of the procedures the setting/school will follow when a child accidentally wets or soils, or is sick while on the premises. The same precautions will apply for nappy changing.

I really empathise with you. DS 1 is 7 and has intermittent soiling problems, although no actual diagnosis. It is SO soul destroying, and even though you know it isn't their fault, it is hard not to shout at them occasionally when you are tired and just can't face sorting out another dirty, smelly set of clothes.

I am also horrified that the school won't help: I spoke to DS1's teachers (he's in Y2) and despite being a very small school they still find the resources to help him if he needs it, as well as being very understanding about sensitively reminding him to go several times a day. DS2 who is 4 and in Foundation and I know that they fully expect that some children will need help when they start school, not just ones that have an actual diagnosis, but any of them, just because they are little.

Do go and talk to the SENCO / the head / your DD's teacher and explain exactly what you have explained in your posts - I think they are just abdicating their responsibilities because they don't fancy it, but that is grossly cruel to your DD.

Hi,

Just wanted to add hugs and support, we have the same problem with DS3 as SummerRain though we have no firm diagnosis other than 'idiopathic chronic constipation' and to keep giving him large amounts of Movicol.
He also starts school in September and we are putting plans into action for the issues that may arise.
I had similar problems as a child and eventually it sorted itself out, that seems like all I can hope for with my little one.

It's tiring and frustrating repeating yourself over and over, cleaning, etc but don't be too hard on yourself. Speak to the school asap and get some support and reassurance for you and your DD. Good luck and best wishes.

PS I think I've lost another 3 pairs of pants today

Hi there, I echo all the posters who think the school's stance is very poor. I imagine they have a generic policy that staff don't wipe bottoms and I guess that is understandable given the fear of a rogue member of staff abusing that. But that is for children who are continent and able to manage using the toilet. If they have something in writing from your dd's specialist then hopefully their stance will change, as they should adopt a different policy with children who have medical problems which cause these accidents and messes.

I do feel for you and how difficult this must be. One thing I wanted to say though was in response to you saying a few times that you tell her that 'this is how she is different to other children'. I would avoid making her feel "different" to other kids - "different" is not good when it comes to children and their fragile psyche, especially with a condition she could find shameful and embarrassing. I would try to emphasize that she is not the only child to have this, that it will improve with time, that together you can manage it in the meantime but that does involves changing pads regularly etc.

Thank you all.

DD has movicol and sodium picasulphate for the poos and oxybutynin for her bladder every day. We have had to do disimpaction regimes a number of times.

We are going to tackle school next week and ask that she is taken to the toilet every break time and after lunch and assisted with any pad changing needed. If they refuse I am going to get a letter from the consultant in a couple of weeks and see the Head to ask about support for kids with medical/SNs.

I wish I'd gone before now, but DD seemed to have been managing.

She is the most fantastic little girl, so full of energy and fun, makes friends wherever she goes and is loving school. We have so much to be thankful for but some days it is just overwhelming.

Our worst day so far for 'lost' pants was a grand total of 6!

I so hope that all of us dealing with kids like DD will all be able to look back and laugh in years to come.

That sounds like a good plan of action :)

I've just noticed this thread. My dd had constipation and soiling for years. It is incredibly frustrating, I shouted at times too. You've had such good advice I won't add anymore.

I did want to add that my dd developed an open sore which got infected. I felt terribly guilty but it wasn't clearly visible without a full on inspection, remember to keep a close eye when she gets sore.

Ds1 is 6 and in year 1. He never managed toilet training so started school in nappies. The school were brilliant and helped change him several times a day. He then moved to dry like me pads and then to a woble watch which was set around his school routine to remind him to go to toilet, that then broke and they were good at reminding him when to go, bar the very occasional day when he is very tired/distracted he no longer has accidents at school.
I have to say his school has been absolutely brilliant with all of his issues, speech therapy was quickly arranged when he started, ed pysch assessed him and helped push through pead referral, they have routines in place to help him with his fine motor skills and social interaction.
If the school are not wanting to help at all then I woul be looking for a school that will, if you can get a letter from doctors stating that she needs x and y help then it might help with a transfer. What have school said about the fact se soils herself?