Starting reception with bowel issues and in pull up pants - advice please

[RachelHRD]

Had a meeting with the SENCo at DS's (4.5) new school today - he starts in reception in September but suffers with chronic constipation and is under a paediatrician at our local hospital but we are struggling to get him on the right medication to stop him backing up and suffering from overflow.

When we looked around I mentioned his bowel issues, said we hoped that he would be sorted by the time he started school and asked what their policy was and she indicated that generally for bad accidents they call parents in to help clean up the child so the child isn't too distressed by it. So we met today and I said that we had hoped he would be sorted by Sept but as time goes by and with recent problems with him being backed up and needing clearout and still not settled on meds that it is looking more likely that he may be starting in pull ups. He can and does use the toilet but because of the long term chronic constipation he doesn't get the 'signals' that he needs to poo so is no where near continent.

She said this is a first for her as they do have some children starting in pull ups and they stick to the rule that parents must come in to deal with big accidents but that they haven't had someone with a medical condition which means they aren't fully continent. She has asked us to leave it with her and she will talk to the School nurse (who covers more than one school) and get back to me.

Does anyone have experience of this or something similar? If she comes back and says I have to come in to change him (which would be a nightmare with DD and mean we couldn't really do anything if we were always on call) can I appeal to the LEA? Would a child be statemented for a physical problem. I'm kind of hoping that they would have a teaching assistant to help out - a friend of mine was employed as one to look after a little girl who wasn't statemented but had learning delays and needed toilet assistance at a different school.

Any advice welcomed - I do worry about it and the effect on poor DS of probably being the only one with these problems :o(

Ask her to liaise with the school nurse and get a care plan drawn up.

You should not be having to go into school. As verity said, the care plan will name the adults responsible for changing the child (usually two named in case of absences). These support staff can be paid a slightly higher rate as they have a workload that includes this type of care.

Ds1 has encopresis. He is 10 now and we are just getting it under control (use of enemas as well as stool softeners). Loads of threads on encopresis though.

Statement completely unnecessary for health issues.

Care plan all that is required.

Thanks verity that's very reassuring! I just hope the school come back with a similar arrangement - it's going to be difficult enough for him without having to have me come in several times a day.

My DD had this and temporarily went back into pull ups in Reception, whilst the movicol cleared her out.

The TA used to clean her up and change her for me. It wasn't a big deal and they seemed quite happy to do it. However, it was a temporary thing for about a month. Once we got to the maintainence dose stage she got more control and was able to go back to knickers.

I just used to send spare pull ups in with her and a load of extra uniform.

Oops that shouldn't be a grin at the end of my post it was meant to be a

Your comments are reassuring - especially as we are likely to go through a similar problem with my DD (2) who was born with imperforate anus (bowel/anus not fully formed) and had a colostomy for 18 months and is on long term laxatives and may well struggle with potty training. I pre-warned the SENCo about her too!

I'm hoping that things will have improved by Sept but we have struggled for so long to get him on the right meds to give him some level of consistency it is looking less and less likely.

I think you need to be very very clear with them that this isn't a toilet training issue, but that it is a medical and health issue, because from experience they are otherwise likely to just not get it and to insist that you come and change him. Try and get a fully detailed care plan in place and maybe a letter from your consultant detailing his diagnosis as well. I hope the SENCO and nurse come back with the result you want, but if not do keep going back to them.

My DS has these problems but at the time it was not diagnosed as a medical problem and our school called me in everytime. Even when it was diagnosed and he went on medication they had detailed reasons why they couldnt help.

Prior to this they had told me they would try to help but actually they never did and the TA's later admitted they were told never to even help a child change themselves for child protection reasons. My DS would have to sit in the office and wait for me to get there sat in poo. I would never be more than 5 minutes away from school in case I was called and would then have younger siblings in tow.

I fully agree with other posters who say you must get a detailed care plan in place before he starts. If you start by going in then you will set a precedent as I did. We also had huge issues with other children and parents. I found in our medical records that the HT had advised our paed that the other parents had all complained about the hygeine issue of his being allowed in school!!! Still not sure where they thought he should be but presumably just anywhere else the same as the children whose parents smoke and make their child smell or those who have SEN!

Your experience may well depend on the type of school and type of parents, ours I am sure would be one of the most non inclusive!

If you paed cant sort it get referred to a gastroenterologist and get it sorted before school. We waited far too long dealing with peadiatricians whilst he lost much of the first 2 years of school.

Hi, I'm a primary SENCO.

The upshot is that the school do need to deal with this, as with any other medical issue. They may have to sort out their facilities. We installed a shower as we have a child with a (long term) toilet issue. CP seemly means we must have two people present, I luckily have a team of fantastic TAs/ LSAs who all were happy to help. We would aim to support your son in becoming more independent with changing pull-ups and into spare trousers. Wet-wipes are much easier than tissue. We now rarely help our yr 2 clean just the floor afterwards

There are no regulations that say there must be two people present and most schools just don't have the staff to provide this level of staffing neither does the setting have to provide special facilities but they do have to change a soiled child and not contact the parent to do so.

we're in scotland so not too sure if its differnet but my dd also started school in pull-ups with multiple accidents throughout the day. we live in a rural area and its just not feasible for parents to go in and out of school all day - (i would have had to move in permamently!) and it would have affected her to have mummy there when no other child did. Before she started we had meetings with head and explained situation. tbh was quite straightforward as dd had been in nursery there too.

Upshot is there was a classroom assistant employed full time in theclass for her toileting needs. Luckily she is amazing and we love her to bits. She has this nack of being there whenever dd needs her without even calling for her, but also not crowding her or being obviously there purely for dd. She improved the girls toilets by putting disney posters up (needed something to talk about as sometimes they could be in there for hours ) and the whole class worship her. She has managed to make us all feel better - it was heart breaking to think i was leaving my poor dd in school when she was petrified of having accidents all day, and then having someone other than me to clean her up (which is of course intensly personal)
My dd is now clean every day thanks to daily peristeen having spent years on movicol/senna/picosulphate etc.
I digress, sorry There shouldelbeen a solution to your situation. If he had broken his leg or had dyslexia there would be assistance in place. This should be no different.

Oh and there is never 2 adults present

gastroenterologist is right, if this problem is not getting better you need to see a real specialist, a paediatric gastroenterologist, especially because of the family history with your DD's problems. ( sorry if you already have but just don't want to advertise all the medical details on MN!)

I taught a wee boy with similar problems. The parents gave written permission for named staff to change him when accidents occurred - up to 6 times in a school day. A log was kept of when he was changed and by which members of staff. This continued for the year I taught him with no issues.

Thank you all so much for taking the time to post - it is very reassuring to hear what has happened with other people.

Gastro I'm so sorry to hear you had such problems with your DS and it just horrifies me to hear about what other parents said - WTF? That is just truly unbelievable and intolerant - makes me so angry. Interesting what you and anyway have said about going above paed to gastro specialist - I have thought it myself - especially as my DD has her own consultants and continence nurse who has also said if what we are currently trying doesn't work we should push to be referred higher. His paed is great but I do sometimes think he is a bit reactive and happy to go with what I suggest (from experience and knowledge gained via DD's issues). At the moment he is doing OK on dulcolax (recommended by DD's CN) but it makes him very fluid and I just can't see how we are going to get him clean - will see what happens if we gradually ease back the dose hopefully whilst his bowel is getting back to it's normal shape. If it doesn't work I'll definitely be pushing for a consultant.

Vini and stargirl it's good to hear from the school side of things and I feel much better prepared now to deal with what the SENCO comes back with.

Sunshine sorry to hear your DD has had similar issues but reassuring that the school acted well and got you a fantastic sounding TA. Good to hear that the Peristeen is working - I have heard of it through my DD's issues and good to hear it is a positive solution.

Thanks again all - this is such a great place for support and advice

There is a child in ds's Year R class with this issue and he only does mornings. He goes home in the afternoons.

You need to discuss this more with the school. The disability discrimination act (I know that;s not its official name!) covers this and the school are legally obliged to change him. It is his disability....you would not send a blind child home for being blind!

I am an infant teacher and I have been faced with this when I wanted to send a child home to be showered as he was covered in it! In my experience, most parents will happily come in if the child is really dirty but when it is something that happens a lot and can be qickly dealt with (ie a quick clean up) then we should not (actually not allowed to) be ringing parents.

It would help if you could provide wipes and nappy bags and spare clothing but that is all. You should not be expected to come in whenever it happens

Even if this was just a toilet training issue, schools are expected to train them!!

They should not be calling any parent to come and change a child. All staff in school are CRB checked, so there really is no need for 2 staff to be present to change a child - let's face it, most reception classes only have 2 members of staff anyway. Our school's policy is that the person changing a child will be someone that knows them well - but other than that we take turns. No form filling - just a quick chat with parent at the end of the day. It is wise to get the school nurse involved early as care moves from a HV to the nurse when the child starts school.

www.hertsdirect.org/docs/pdf/s/SupChinnap

Where do we stand in relation to The Disability Discrimination Act (DDA), incontinence and nappies?

?Any admission policy that sets a blanket standard of continence, or any other aspect of development, for all children is discriminatory and therefore unlawful under the Act.?

?Asking parents/carers to come and change a child is likely to be a direct contravention of the DDA, and leaving a child in a soiled nappy for any length of time pending the return of the parent/carer is a form of abuse.?

I was only advised of DDA too late when I had already set a precedent and then chose not to pursue it. School made it so clear that they did not have the staff etc and I genuinely believed that they would have encouraged/managed him out of the school had I pushed it and they would have been supported by all the other parents with their hygiene concerns. They also made me feel like I would be distressing him unduly by allowing him to be cleaned by someone else as he should be embarrassed. Having said that my DS often required a shower and school said they did not have one so we would come home briefly.

However I know that at the same school a child with an SEN and medical diagnosis and a care plan in place before starting has been cleaned up but with a statement and 1 to 1 care. Our issue was because there was no diagnosis, he was not in nappies and when the first accident happened I was called in and then continued to go in for fear of his being forced out as have seen many other less than perfect children managed out by staff or other parents. Luckily I was self employed and could always be there in a few minutes.

My DS was teased in reception and by year one known as stinky so whilst
there may be others wetting at start of reception in our case it caused awful long term issues both physical and mental hence my recommendation to try to get proper treatment as early as possible - go private if necessary. Not sure if all children would be as traumatized as mine guess it depends on their confidence and other personality traits and mine was also in pain.

Just to add that for different reasons we had some problems when DD started Reception. We were lucky that the school were calm about it and changed her no problem. The point I am trying to make is, for whatever reason, this is not an uncommon problem and your DS will not be the only one.

Just wanted to update on this and thank everyone who posted and gave good advice which really helped.

The school have been great thankfully and we have had several meetings with the SENCO which today culminated in a meeting with her, DS's teacher, class TA and 2 other TA's who were all hugely encouraging and supportive with regard to how they will deal with DS's toileting needs. They are going to put a changing table in the disabled toilet and would also have considered converting a toilet into a shower room with changing facilities had he required it - which I don't think he does!!

The staff are lovely and have said they will make it their job to make sure DS doesn't feel different from the other kids. They are also happy to deal with his needs for swimming re swim nappies which I am thrilled about as the school has a pool and I didn't want DS to miss out on swimming.

So all in all we are very relieved.

With regard to DS's bowel issues - still not great, he is on Senna at the moment but I don't think we will keep him on it as it doesn't seem to be working. We are awaiting a referral to a gastric specialist at DD's hospital (Tooting) so fingers crossed that comes soon.

DD has just finished Year 1 with exactly the same problems as your DS has, today she had two accidents, she has a dedicated TA who changes her.

She is also on Senna has been for over two years with various results, and the levels have been going up and down, she now has a dose of a stronger laxative at the weekends, and 5 mls daily of Senna, we are still now where near sorting it and finally have been referred to a specialist nurse by the community paediatrician.

I'm sorry to hear you are having similar problems five but good to hear that the school are being supportive. Hope things start to improve now you have been referred.