Chronic constipation and School acceptance.

[claire5]

Hi I'm new here and just trying to find other peoples experience and any ideas or suggests. I have a 5 year old in reception who has be suffering from chronic constipation for a year we are on Movical sachets 3-4 a day as well as Ducolax at night. We have managed to get a good routine going whilst off school! However my son doesn't know when he has gone and so will stay in the mess. We have to physically put him on the toilet a set times and other for period of time. He has social and communication difficulties and is under SEN. We have found school to be very unhelpful and since going back the accidents have increased and he has been coming out in soiled trousers! we have approached school even before he started with the situation but have told us that they cant do this as they dont have the staff and he would need two members as he needs to be put on. I just wondered if anybody else has had these issues and what they can offer/suggest. thank you

[Alicass]

Hi

We've had constipation issues with my youngest who's now in Year 1.

In Year R the school were very, very supportive of him but due to lack of staff in Year 1 they haven't been so supportive. I did ask the Head and she said it was down to staff numbers. Luckily our situation has improved.

Have you spoken to your local School Nurse? They are very supportive and maybe able to help. They can offer the school support mechamisms to help your son and will negotiate with the school if you're having difficulties with them.

Do you work full-time? I work part-time and when my son was on Year R I went into school on the days I didn't work to sit him on the toilet at lunch times.

I don't think people understand how hard it can be with a young child who has toileting issues. I completely empathise with your situation.

Is your son under a Pediatrician? You can also look on the ERIC website for more info.

Xx

[claire5 in reply to Alicass]

Hi Alicass

Thank you so much for your reply. Unfortunately our school haven’t been so supportive at the moment we did a clear out over Easter and by week 2 were on a really good routine, I was still having to put him on toilet but he was willing but when he went back to school they would just send him & due to the lack of communication skills & that he can’t feel when he is going he would walk in & then back out.

We ended keeping him out of school as he was starting to suffer from bad stomach cramps We do see a paediatrician but that is because he is being assessed for autism so is under special needs at school so we have difficulty getting him to understand & sometimes we are just talking at him but we try to explain constantly . We saw a nurse who gave us the Ducolax which really helps.

We have set up a meeting with SENDiass to see if we can get support before final straw of moving him. I currently don’t work unfortunately I was made redundant last month so we have arranged to go in at 10am & 2pm so I can take him if necessary clean him so he can stay in. But we have been advised that we shouldn’t be doing that but I’m happy to do so until we can resolve as it’s definitely going to be long road ahead.

I agree with you people really don’t understand even family memebers we have struggled with. Especially as I have a niece & nephew the same age! There very dismissive which makes it harder! only recently come across the Eric website and it’s fab it definitely makes you feel like your not on your own.

How did you find your son social at school? Do you think it effected him making friends etc?

Xxx

[Robinia]

Sorry to hear you are having such issues in school, sounds like you have got it all sorted at home.

I agree re:school nursing referral, you should be able to refer yourself in hopefully (that’s what I did, I just googled it) .

As he’s SEN there should be a governor of the School responsible for SEN. You can approach that specific governor and explain that your sons toileting issues are related to his social communication issues and that he needs a written toileting plan in School. This should be written with support from continence nurse or school nurse ideally.

You can go to your GP and explain the issues and get the GP to refer you urgently to the local continence service (but can take time) . Also speak to GP about a community paediatrician referral.

I’m sure you’re already doing this but one last thing, try to get him sitting on the loo every morning for at least 10 minutes after breakfast and before school with feet on a squatty potty and a game/toy to play with or some bubbles to blow/balloon to blow up.

Ps. Also put pads in his pants for school and send a changing bag in his school bag with spare trousers, pants, pads, wipes, cream and write an email to School to say he needs to be able to use the disabled toilet and he will need a member of staff to gently tell him to go. You might be able to teach him to change his pants/pad on his own which would prevent him needing someone in with him (depends on the child), this all needs to go in the toileting plan along with a chart to ensure he’s being properly encouraged to sit on the loo after lunch (not just sent and then coming out 2 mins later)

Good luck, ignore anything I’ve said that’s unhelpful xx

[claire5 in reply to Robinia]

Hi Robinia

Thank you for your advice. We are hoping to get a plan set in place with the next week with all parties. Unfortunately he needs to be physically sat on the toilet otherwise he won’t go. Which we understand with teachers etc is hard. I think it’s there lack of pro active ness and just there is no extra staff to this that makes it more frustrating as it feels like there not even trying to help us. Yes we do the bubble/toys/games on toilet and roughly for about 10-20mins.

I will go back to the gp and ask about the incontince referral.

Thank you will keep posted. Xx

[claire5]

What type of pads would you recommend? I have tried to look for something like this but haven’t found anything.

Thank you x

[Robinia]

I used to use the dry like me pads which you can buy in Asda, I thought it sounded like you were doing everything you could 😁 I’m sure you will get things sorted for him.

[claire5 in reply to Robinia]

Thank you I will have a look at them. And thank you for your advice as well very much appreciated 😊 will keep you posted xx

[SallyandPaul in reply to claire5]

Ps might have been earlier than that

[SallyandPaul]

Just wanted to say that you have some great advice here but wanted to add that since a law was passed in 2016 they have what is called a legal duty of care so they HAVE to deal with it and help your son.!! Try and be politely forceful, I know it's not easy. My daughter uses sanitary pads which work well but she is nine. Good luck x

[Hidden in reply to SallyandPaul]

Hi sorry to butt in but do u have a link to that law. Lb is 7 asd and fully incontenent bladder and bowel. School are insisting if his bowel move in school they won’t deal with it and continence nurse told us to send him in to school in January in just underwear 😳😳😳. She has not a clue about ASD. Many thanks

[claire5 in reply to Hidden]

Hi this maybe too late but there is advice and I think a link on the ERIC website. Also check your schools SEND policy by law you should be able to access it and read it through website on school or provide you with a copy. Also we ended up getting Educational Welfare involved as they weren't helping Ryan so he was soiling/pooh and being left. You could google it aswel its under I think the family/childrens act 2014. Does he have ECHP or Care plan? Xxx

[Alicass]

Hi Claire5

Re the social issues - I don't feel that it's affected my son really. He's been embarrassed a couple of times but it definitely hasn't stopped him from making friends. He seems to have a large group of friends.

I would definitely try the toilet idea mentioned, feet on a stool and blowing balloons/bubbles. It's really worked for us but we've been doing it since February 2017 and still doing it now. I'm sure it's helped his muscles. He used to poo even though he said he didn't need one. We've invented all sorts of games over the 14 months. The most recent being we score a point when the balloon goes into a room upstairs.

This forum has been very supportive for me. Until I found it I thought I was the only person going through this. Please let us know how you get on and feel free to shout or vent your frustration as we all understand.

Xxx

[Misty10]

I would suggest u put some sort of liner or pull up inside his pants or boxers. My daughter the same and starts school this year I'm dreading it but will be asking to speak to staff so they understand her needs. X

[claire5]

Hi Misty10 thank you since this post we have tried this although it helps as in less underpants thrown away. He still doesn't know he has soiled/poo in most cases. Are other main issue was that school weren't changing/helping when he had so was left in soiled underpants. They are getting better we have a diary I write in and school he is taken 3x a day in school at certain times and they say whether he had a poo so we can somehow monitor better. We are still in pretty much the same position. Although we have to take him for an MRI scan soon for his memory discrepancies he is having that are becoming worse and we have just started an early years assessment to hopefully get him a one to one or more support in school as he is on the same level he was when he left nursery. He is know in year 1. Definetly we went into school not long after finding out where he was going to put a plan into place. I hope it goes smoothly for you all. Xx

[Misty10]

Thankyou Claire I will let u know how it goes. I'm potty training her atm she still refuses to sit on a toilet. But hoping once she sees all other kids on toilet she will do it.as she very forward in her age it's the bowels that has set her back.bless them.

[Amanda-87]

I am having the same problem with daughters Pre-school she is 3 years old and on Movicol upto 6 to 8 sachets a day, senna at night and lactulose twice a day now the school won’t give it to her as I need a note from the her doctor to say she needs this medication even though the box has her name on and how many times and sachets a day on it x

[Lktoday]

My son is now 12 and has had this issue since reception. We have been lucky in that school have been quite supportive of this though it required quite a few meetings of me explaining exactly the clinical nature of chronic constipation. He also has communication issues and just doesnt seem bothered about his soiling. There were times when a member of staff (with another present for chaperoning) was needed to help him but when he was very small we had him measured by the continence nurse/school nurse for the area for pull-ups on prescription. This is a double edged sword as he seemed to care less about wanting to go to the toilet regularly as he got older but did make the issue more manageable. He actually had pull-ups on and off until year 2. As I say, he’s 12 now and we’re still not out of the woods sadly. SEN children should have a care plan put in place by school, they may also be able to access extra resources. My son is awaiting full assessment but has had educational psychology input & on his first day of high school I was approached to introduce his key worker who has been a great point of contact to tie together school and health issues, and a care plan was written up. Sometimes it requires stamping your feet (we have been lucky with high school) but children have a right to an education and schools have an obligation to deliver it and take into account their needs- technically I’d imagine it comes under a legal obligation with regard to equality and disabled access.

[14crosstitch14]

We supplied our school with a child toilet seat, all they need to do is ask him to go toilet, or he can go with a another child and make it a game? I think their are exercises he can do to strengthen his bowels also try a timer for his home routine to match the school so he has the same routine all the time. Maybe that'll help.