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Chronic constipation in 4.5yo

20 replies

KittyandTeal · 17/05/2017 11:12

We have just seen the paediatrician after almost a year of back and forth to the gp. My dd has been diagnosed with chronic constipation. She is back in nappies as she almost constantly soils. We are at between 2-7 nappy changes a day.

The doc has said her rectum has stopped sending the message to her brain that she needs to go. She's on movicol, senna and liquid paraffin atm and has been for a week.

The thing I most worried about is school. I have just met with her new class teacher to explain things and she was lovely. They have facilities at school to change her but at certain points during the day they won't have the adults to do it. Therefore it may be a case of part time (although that can't be for long as she's statutory school age by end of sept) or I will need to go and change her.

I work at a school so I know these suggestions are absolutely reasonable on their part. They cannot loose an adult teaching a group to go and change one child.

However, I'm really stressed about it. We're following the doc advice to the letter (I think part of the problem so far is I've tried to follow too many people's advice and none of it has worked)

I guess I just want a hand hold and to hear from anyone else who has been in the position of having to send their child to school still not fully clean (she was fully toilet trained for a year before this all started so please don't think I've been too lazy to train her properly)

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KittyandTeal · 17/05/2017 16:25

Anyone?

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PotteringAlong · 17/05/2017 16:30

I work at a school so I know these suggestions are absolutely reasonable on their part. They cannot loose an adult teaching a group to go and change one child.

Reasonable, but I'm not sure enforceable. They need to accommodate all children - it might be worth posting on the SEN boards because there are bound to be some knowledgeable posters there who can help you with how best to deal with this issue Flowers

KittyandTeal · 17/05/2017 16:33

Thank you. I've been assured by the preschool manager that they are not enforceable (which I kind of suspected)

Thank you, I may try the SN board

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ButTheBearSnoredOn · 17/05/2017 16:33

Movicol, movicol and more movicol! And the school will have to find a way of dealing with it. Hopefully it will only be temporary.

KittyandTeal · 17/05/2017 16:56

Thank you. She's only on 2 sachets a day but is taking the senna and liq parifin along side it.
It is definitely temporary but it may take a while to sort.

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FrayedHem · 17/05/2017 17:50

Has a referral been made to the children's continence nurse? If not, try and get one done as they can give you advice and put together a care plan for school, and speak to the school as well if necessary. Hopefully the medication will do the trick and you'll find she gets into a consistent routine. It took a while for my eldest's chronic constipation to resolve (he also has ASD and a restricted diet) but it did and my days of worrying about his bowel habits are long gone.

StinkPickle · 17/05/2017 17:54

Is she 5 at end of September? If so she's not stat school age until January. In case that gives you any reassurance you have more time to hopefully find a solution.

KittyandTeal · 17/05/2017 18:06

No ther hasn't been Frayed. I'll request that at the next appointment. That's good to hear about your son. Dd has a slightly restricted diet although it's getting better.

Thank you stink. I didn't think that was the case, I thought stat age was as soon as their first birthday (I'm a teacher and we had a few hoops to jump through to keep one of our children part time after stat age) I'll look into that. Tbh apart from toileting she is more than ready for school so I'd rather they didn't put her on part time until January.

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FrayedHem · 17/05/2017 18:35

If you have a HV they should be able to refer.

As DS1 was statemented to start primary with 25hrs 1:1 it was a different situation to yours, but the SENDCo said they always rang parents to deal with soiling. The Specialist Teacher printed off the law which states said something about leaving children in soiled nappies/underwear is wilful neglect and informed them if they left him soiled and called me to change him, they would be committing an offence!

KittyandTeal · 17/05/2017 19:05

Frayed thank you, I'll get in to that.

They seemed ok in principle at the idea of changing her, she said that in plan, learn review time it would be fine but that during group time she needs all the adults to run groups. Which I fully understand, however, I am a 10 min drive away if at home. This restricts me to staying home all day on the days I don't work which is impractical and unrealistic. I'm not sure what would happen on the days I work, she was vague on that.

I think it would be fine if she had other additional needs and qualified for a 1:1 as they would have an adult available to change her.

Fingers crossed for a more regular bowel movements.

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StinkPickle · 17/05/2017 19:07

Definitely January

See link

www.bathnes.gov.uk/services/schools-colleges-and-learning/support-parentscarers-educational/children-missing-educatio-y

It's the term after they're five. So eg my child turns 5 in May so isn't compulsory school age until the first day of term in Year 1.

KittyandTeal · 17/05/2017 19:30

Thanks for that stink. I hope that doesn't mean they will insist on part time until January. She'll miss out on so much

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teacher54321 · 17/05/2017 19:39

Hello! Ds had constipation and withholding issues-not as severe as your dd's, but took a year to resolve and we had a relapse a couple of months ago which was very distressing for him and us. You have got a fair while before September so things do have time to improve Smile the ERIC website is amazing, and so is the Anthony Cohn book (on kindle app) called something like 'constipation, withholding and your child'. It's a short book but has good and reassuring advice. Although I'm a teacher I don't know the legalities of being changed once in a school setting, as I'm secondary based. Good luck, movicol did the trick for us, but give it time and phase out, don't whatever you do stop laxatives suddenly!

KittyandTeal · 17/05/2017 19:53

Thank you for you reassurances teacher. I was told that it could take up to 18 months to resolve but I was hoping that we could be in a situation where she was back in pants with pads and just a few small accidents. That sounds manageable for the school tbh.

I'll have a look at that website. Thanks you

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fourlights · 17/05/2017 20:14

Hi, finding this made me want to cry, for you, for me and just out of relief!

I could have written it myself.

We are in exactly the same situation, it's been going on 2 years now.

DD Starts school in September too, and it is a huge worry of mine and a major stress.

Still in nappies half the time and no other SN.

Won't let anyone but me change her.

Here to handhold and sympathise.
WineFlowers

MiaowTheCat · 17/05/2017 20:19

This reply has been deleted

Message withdrawn at poster's request.

KittyandTeal · 17/05/2017 20:53

Oh four it's so, so tough isn't it. Having no other SN means that I feel like people assume we're being lazy and not nothing to toilet train her properly or just letting her get away with it. It's so, so stressful. Luckily dd will let some other adults change her as long as she trusts them (her preschool are utterly amazing) but that doesn't help if no one at school will change her. If she was older we could help teacher her how to clean herself up but not now.

Miaow I'd rather not have to battle school about this but I will if I have to. My dh quiet sensibly said they won't be willing to loose her (as a school space and she's fairly bright so decent 'data') just because of this so they'll need to find a way to support her.

I'm just really bad at sticking up for myself and insisting on something.

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fourlights · 17/05/2017 21:08

I'm only on the app at the moment,
But if you PM me we can have a chat, it's about managing your feelings about it too. It's important to look after yourself.
I have a long list of Resources and information stored in my iBooks that I am happy to share.
I have done so so much research!

Blinkingblimey · 18/05/2017 21:55

I'm also posting to reassure you that there's 3 and a half months before school starts and I'm sure you'll make at least some progress before then. Oooodles of lactulose and creating a 'regular time' (I know that sounds weird but essentially I'd bribe dc to stay there with extra reward for 'a result' at a non school time of day and it eventually became a habit...) worked in the end for us in the end but it was a slog and I can really empathise with your worry, please try not to too much!

KittyandTeal · 19/05/2017 20:21

Thanks blinky. I know someone else who sweats by laculose. We're trying the sitting on the toilet after breakfast lunch and dinner which she will do. She has stickers for sitting on the toilet and once we get to the point of her managing go in the loo I will definitely bribe to try and get her pooing in non school times.

Thank you everyone who has answered so far. It actually helps just to know I'm not on my own and that dd is not unusual.

It's so hard not to blame myself. We've had a rough few years after loosing 2 babies which I know has affected her as well but I feel like while I was so distracted grieving I've missed something and it's created a huge problem that might have been more easily sorted if I'd caught it early.

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