What to expect from school?

[Graciecustard]

Hi,

Looking for a little advice ☺️ I have a 5 year old with constipation issues since infancy. We have gone through all usual routes - health visitor, gps, paed. She is prescribed movicol and lactulose - although both of these are a struggle to get down her. When she first started school I explained all to her teacher and she was really relaxed and just took it in her stride. She since has a new teacher. Since starting school she has only had 3 major incidences of constipation that have actually effected school. This week I was called saying they have had to change her underwear frequently due to overflow.

When I picked her up from school I was informed that this was affecting her learning and that of her peers as the lovely TA had spent a lot of time with her in the bathroom. I was obviously quite frustrated. I was told that if the teacher had been alone she would not have been able to deal with her logistically.

I came home, researched and contacted the head requesting a plan put in place. That has now happened, however I don’t know how I feel about it. I have been told that if they have to change her underwear on more than so many occasions then I will be called to pick her up. However, I would rather they call when she was upset, in pain, uncomfortable etc...?! The number they have given isn’t a small number - but The more I think of it, the more I am surprised that whether they support her further is based on a number rather than her. I guess I just don’t know what my expectations should be. i did state that I felt by her being sent home it was segregating her, I even went as far as stating that I expected if not managed correctly as she gets older I am fearful that her peers would find out and segregate her, but it looks like her teacher is doing that first 😔. In response they suggested she would be better at home so she didn’t need to feel uncomfortable in front of her peers. I am completely confused, I love the school, but currently now wanting to keep her home with me where I can look after and protect her.

Long post, so do apologise... just wondering what are fair expectations from a school supporting a pupil with constipation?

Thanks

[jane-anna]

I think the school have to support you it doesn’t matter how many times she needs to be changed it’s a medical problem and she needs help. At my daughters school the TA usually changes her but if she’s too busy then they send her with her bag and one of the reception staff sort her out. Schools have children with all sorts of problems that take time to deal with.

[Morleyslass]

Hi, it’s really hard when they are at school my little one has just gone 7 and she has to change herself if she has overflow. If it’s bad I get called to school to change her. I send in a bag with toilet wipes and nappy sacks etc. Her school don’t have the staff to be able to change her especially if the children are working in groups. As a parent it’s really hard as your conscious about other children’s reactions, most have been good in her class the odd few have said stuff but she just now tells them she has Bowel trouble.

If she is having frequent overflow you may need to change her medication slightly as she may not be clearing out fully, might be worth a chat with peadiatrician and let them know and maybe contact the school nurse about your concerns

[Chocolate-chicken]

I had a meeting at my 5 year olds school to discuss this very issue yesterday! Her school are being utterly amazing and I cannot fault them. As it happens, my daughters teacher is the school senco, so I think that has helped a lot.

Currently in reception her class have a full time teacher, full time TA and a student teacher. This means that changing my daughter 5 or 6 times a day (!!!) has been manageable (not ideal by any stretch of the imagination though obviously!). We are under the care of the child continence team, and my daughter's teacher also has their contact details and speaks to them regularly (i think this has helped massively as we are all on exactly the same page with it all).

My concerns were that in year 1 there is just a full time teacher and a part time TA. I was concerned that there is no way they could continue this level of care. However, after quite a few tears (mine) her teacher arranged this meeting to reassure me.

What she has now put in place is: a care plan that goes to every member of staff at the school explaining that this is a medical issue, she has applied for funding (with a letter from our continence team confirming the constipation issues that my daughter has). This funding will allow the current reception TA to pop into the year 1 class every hour to check/change/medicate my daughter.

I'm not going to lie, part of me feels incredibly sad that my daughter needs extra funding, as in everything else she's doing so well.....but the flip side is that the school will be able to manage the current situation will minimal disruption for anyone.

So, my suggestions are to make an appointment with the school senco and go armed with letters from your pediatrician/gp outlining the medical issues your child has. If you can pass on any contact details that would help too - the continence team were more than happy to speak to my daughter's teacher and offer support, so this may well be the case for you too.

Also mention that there is funding available for this, and ask the senco to look into it.

After a request from school (and reasonable agreement from the continence team) we also send our daughter in with a couple of incontinence pads already stuck in pants. They don't always use them, but on bad days they have the option to just take the pressure off a bit as it obviously stops a lot of the mess (we have issues with wetting and soiling, possibly caused by constipation)

We are also going back to our continence team and requesting further tests as despite the various medications we are still not seeing any improvements.

Agh, sorry for the essay. I'm so sorry you're having all this hassle. I am a mess just dealing with the situation we have, I can't imagine how you must feel having to fight with the school too. Let me know if you need any more information xxxx

[Graciecustard in reply to Chocolate-chicken]

That’s really interesting to hear about the funding. They did discuss mention her moving up the school, and pretty much told me that support would be further limited at that point.

Can I ask how you have found the continence team to help, I feel like right now they are my last support option and I don’t know what to expect.

So glad to hear you and your daughter have such amazing support in school - it truly sounds incredible!

Thanks so much for your reply ☺️

[Chocolate-chicken in reply to Graciecustard]

We were referred to the continence team by our GP, I think they are a midway step between the GP and the pediatrician. I don't know if it's different by area...

[Frustratedmum1]

We have been in a similar place to yourself.

When our son was really bad we looked at home schooling our son. Our paeditrian asked us to keep him in school. The reason being was they would improve at home but when you introduce school back inton their life's they could revert back.

Our son is also 5. At school now we have put him back into pull ups and hide them with boxer shorts. It is giving him a bit of piece of mind because if he has an accident it doesn't go through his pants and trousers and it hides it from the rest of the children. If you getting a lot of overflow perhaps it would be worth doing a discompaction programme and controlling it from home. Hence when your child goes back it may be more manageable.

This last fortnight at our school they have not had enough staff to manage with our sons toilet issues because of tests taking place. So he went in for a couple of hours a day. Now he is back up to half a day. They should have a plan in place. I found if you can get the school nurse in side they help you educate the school. The problem is they don't understand. It has taken us 18 months to get our school to understand what constipation can do to a family.

Just stick in there it feels it isn't going to get better at the moment but you do have better days. Sorry about the long message. Let me know how you are getting on.

[Graciecustard]

Thanks so much for all of your replies. It was the senco lead that I had the meeting with, and to be completely honest I don’t feel that she actually understood. It felt like a lot of the talk was centred on the schools needs (we can’t cope with changing more than x times a day etc), with a quick nod to how My daughter would feel.

I did request their medical conditions policy at the start of the week, and it seems that was missing, I advised them that i thought my issues should be covered by that if they had one. On entering the school i did hear them discussing that was now in place however I have yet to see a copy, i also heard that they would be trialling the care plan with me and my daughter, so I am not sure what is available for other children in the school. I very much felt they were chasing their tails which would suggest that they aren’t necessarily up to date and have the knowledge to adequately support my child. The more and more I look at the care plan in place the more I don’t like it. I feel that my child would be able to change herself on certain occasions, and I think this should be put on there. I certainly don’t want her to feel like she has to do this on her own, but she is quite a grown up and usually very independent little girl.

We have been referred to the continence team, and I am hoping they will help us. My daughter currently wears little pads just to catch any overflow, and we pop shorts under the school clothes just in case. I have yet to meet the school nurse, but that’s happening in a few weeks.

I feel like the school think I am forcing her to stay in school, which is not the case at all. Thankfully my daughter just sees this as her, she accepts that this happens sometimes, she doesn’t really get upset by it, and kind of just gets on. She is also not unwell, she hasn’t been in any masses of discomfort, or pain (something that she used to suffer from so badly when she was younger). I feel so frustrated and can’t get it out of my mind.

Honestly I truly loved the school (my eldest goes there too), but I have never needed their support like this before and it’s left me completely in a muddle. I just don’t know what their obligation is to meet her needs. I also understand because of the way I was initially approached I am really acting on the defence which I know I shouldn’t.

From the start of us seeking support we have just continuously been told that she will get better as she grows with no real further support or advice. I will be completely honest the whole her not wanting to take her movicol thing has not helped at all either, as I now I feel like I haven’t a clue how much to try and give to prevent the overflow 😣 this week has been testing, and I am already feeling anxious for her for next week now we have the set ‘time’ that they will offer her support.

Thank you so much for all of your replies.

[Chocolate-chicken]

When we had our first meeting with the continence team (9 month waiting list) I cried and cried.... They said that happens a lot. They have been very supportive emotionally, and I feel like they are normally geared up to educate schools- which we haven't needed... They seem to have stacks of leaflets etc... Our senco printed out the nice guidelines on child constipation for us. This helps us check that the NHS service we are getting is appropriate and that were not getting fobbed off. So far they have been spot on. Good luck, keep us updated!! Xx

[RazDazSaz]

I don’t have much advice regarding school other than I under their duty of care I am pretty sure they have to change her and cannot call you to come and do it (unless that’s what you agree with them).

Your daughter sounds very like my (just turned 5) year old daughter was until very recently though and I just wondered if your daughter had followed a disimpactation routine at all yet? The paediatrician and PACE nurse couldn’t feel any palpable mass in my daughter’s bowel but PACE sent her for X-ray to check and low and behold she had a huge back-up. They explained to me that her constipation (which had likely been there for sometime) meant that her bowel was stretched meaning she wasn’t getting the signals to go. We followed a disimpactation routine as prescribed by them over February half term (lots of movicol essentially) to clear her out. She’s now on a maintenance movicol dose to keep things moving and we were regimental in having her sit on the toilet about 10 mins after each meal for 10-15 mins and amazingly she actually now seems to be getting the signals for the first time ever and making it to the toilet most of the time (and no overflow issues since there’s no overflow there anymore). I just wondered if you’d tried it because before that I had never heard any mention of the fact that constipation can stretch the bowels so much that the signals just don’t get there. Apparently it can take up to a year for the bowels to fully contract.