School support

[Roxyrox]

Hi, my son is 7 1/2 and had severe constipation and impaction as a baby and throughout his early years. We had little support from the doctors , other than to give him movicol, but we had no clue about the problems this would cause him later on, as he still leaks poo several times a day. It’s been a very frustrating time for us all , and I feel ashamed to say that over the years we have got very cross with him, as we had no idea that he didn’t have the normal sensation to poo due to his bowel being stretched. We’ve only recently been under the hospital and understand his problems a lot better now. A big thing for him is withholding , as a baby he had a massive fear of going, and this is just set in his brain and I know he still witholds and sometimes without even realising it!

Anyway , part of out consultants regime is that he cleans himself after he has a poo accident. This is to give him a bit of extra motivation to not withhold, as the usual consequence of this is a leak.

Anyway, this has been hard for me to let go of, as a mum, I hate the thought of him not being completely clean! Now he’s going back to school next week , I need to speak to his new teacher and put something in place for him so that he can go to the toilet whenever he needs to, without having to wait for teacher permission etc. Also , he needs to be able to clean himself up if the leak is bad, and I don’t want him having to do this in the boys toilets because he’s also very shy and hates anyone knowing about it.

It would be great to know any strategies that your children have in place at school, so I can make some suggestions to his teachers on how to handle things. I really am scared that we’re going to go backwards if the right measures are not in place for him at school, so he’ll go back to withholding and leaking.

Any advice would be great !

Thank you !

[Alicass]

Hello

My son is nearly 9 and has had chronic constipation - though he's not a withholder.

At school he has a "toilet card" so he places the card on the table when he needs the toilet. This saves him from waiting for the teacher's attention.

He's also in a classroom near to the toilets at Junior School and is allowed to use the disabled toilet to clean himself up (not that he needs to very often now). No other children are allowed to use the disabled toilet. This means he can take his time to clean himself up without other children knocking on the door.

You can disimpact more than once. Do you have a toilet plan in place?

Xx

[Roxyrox in reply to Alicass]

Thank you for your reply, the toilet card sounds like a great idea, I will suggest that. I was thinking of something similar, but at least with a card he won’t have to wait to get the teachers attention, and he hates drawing any attention to himself .

He has a toilet plan in place , so he sits three times a day after meal times, and I’ve been making him check and try again as soon as we get in from anywhere if we’ve been out, so he knows he has to go straight to the toilet on arriving home. He hates sitting on the toilet , and it’s very hard sometimes to get him to do it.

Thank you for your advice

[Robinia in reply to Roxyrox]

Is he still soiling regularly?

[Roxyrox in reply to Robinia]

Yes, sometimes 3-4 times a day.

[Robinia in reply to Roxyrox]

Well in that case there has not been a complete disimpaction. This is something I have very bitter experience of. It can take a month plus of 12 sachets a day to complete a full disimpaction. And also often you have to do it multiple times. If you contact the Eric helpline they are brilliant 😁

[Roxyrox in reply to Robinia]

Thank you for your advice, the consultant examined his tummy and said not to do a disimpaction regime because she didn’t think he was impacted. I have an appointment soon so I will bring this up again, many thanks x

[Robinia in reply to Roxyrox]

Argh .... consultants..... in my experience soiling equals constipation. My son soiled constantly for 3years. Now clean!!!

[Helen36]

Hello - my daughter has a toilet bag which is kept near the toilets for her so she fetch it on the way to the loo and pop her dirty stuff on the way back without anyone seeing. It’s definitely worth trying to speak to the teacher about it and make sure they know all staff need to give full access to the loos - including staff on playground duty who might say ‘you’ve only just been!’

Some parents on here have negotiated access to a disabled loo. This might be worth talking to the teacher about but location of the loo / proximity to the classroom is probably most important.

Any problems - ask to speak to your SENCO officer. They can actually put a care plan in place that specifies his needs and will make sure all staff are on board. Might be worth doing anyway.

I’d also talk to your son about how to deal with questions from other kids. He needs to be able to explain he has a condition and give him some language to use to help other children know it is not his fault and to be kind. Kids are actually very understanding of this when it’s put to them in this way. They are very used to eczema, asthma, autism labels etc these days and far more able to ‘get it’ that we give them credit for.

Of course, it’s also a fine line to say ‘it’s not your fault’ when you also need them to do something active to not withhold. I say to my daughter, if you feel it: jump up and run to the loo. I sometimes think her withholding is actually trying not to have an accident which of course... leads to an accident! So I have told her what I see when she withholds (knees up to tummy, watery eyes, red face) so she can recognise what she’s doing and run to the loo at that point. It’s not a miracle trick but is helping....

I’d also agree with the others that if you still have soiling then another disimpaction needs to be considered. Have you been given a stimulant too - like senna or sodium picosulphate? Really key to getting bowel tone back.

Finally, I felt so sad to read your words about having got cross with him in the past. Unfortunately that is part of the journey for all of us in parenting through childhood constipation and I have all the same feelings - as do most of us on this forum! Don’t let it upset you. You’ve done amazingly well to get him to hospital level care for this by the age of 7, and that will only be because you recognised and responded quickly as a parent that something wasn’t right - and got him the care he needed. So start patting yourself on the back please!

[Roxyrox in reply to Helen36]

Thank you for your very supportive and informative reply.

My son also has a mild form of ADD ( although he’s not hyperactive or misbehaved) but has problems processing instructions, so this has made things even more difficult to deal with.

Anyway, you are right about prepping him with what to say if another child does ask why he’s going in a different toilet etc...he’s super sensitive about people knowing and wants as few people to know as possible, so this will be really important for him.

I have managed to get an appointment with his teacher next week, so she can talk through how they can help him at school, so I feel like we are taking big steps now towards managing things.

Ironically, he’s had 4 days without any soiling , and has managed to go everyday in the toilet. I really hope it continues!

Thanks again for your advice, and good luck to you and your daughter 😁

[Heidi_hi78]

Hello my daughter is 8 years old incontinent of urine .not poo we got a diagnosis many years of fighting ,2 health boards . regarding school I mum do my daughter's care plan with times e.c t she has her own toilet not shared. The best thing I bought her was the incontinence watch £40 it vibrates you can set up to 8 alarms so for school it set at 11 and 2 she goes straight to her toilet and changes her pull up she has a suit case trolley bag in her toilet with change of uniform pull ups e.c.t in. Speak to the teacher I do her care plan my daughter is independent with her needs

[MrsSquirrel]

Bag of fresh clothes, wipes etc in cupboard in disabled loo. Get school to draw up an Individual Health Care Plan - school nurse or SENCO should know. Its a medical need and should be given provision for at school. It also may impact his emotional health so discreet is key. Our son is 10 and has urine incontinence so I understand what its like x

[Bambie83]

He sounds like he’s got a good toilet routine going already - but does he blow anything while on there? We’ve found bubbles, balloons and those party blowers good for getting those muscles working.

Also agree with the others - not sure feeling the tummy is a definite way to spot Impaction... If you can cope with it I’d do a disimpaction and get him on a decent maintenance dose!

[Roxyrox]

Thanks for your advice. We’ve found that doing 10 star jumps before he sits on the toilet really helps!! I’m going to leave the disimpaction for now as he’s doing really well. If he slips back into having accidents then I’ll definitely do it though.