Starting school with poo issues

[DappledThings]

Not NCd so anyone can see I'm not the poo troll.

DS starts school very soon. He is fine with wees and has been for a long time but we have never managed to get his bowel quite right. We have been on and off Movicol and when he's been on it he's been on a multitude of different doses. We under the care of a specialist HV who has been consulting with the bowel and bladder team and I've had a call back from Eric.

We either have him medicated which results in 9-10 small, solid (but not overly hard) poos a day. Some of which he gets in the toilet but some not because it's a lot of times for him to interrupt his day. Or we can have him unmedicated where he will do perfect, large poos every 2-3 days but has multiple smears inbetween.

Both scenarios require him to have help. He wipes well but needs to be with actual wipes that he can then put in a nappy bag and throw away, toilet paper just disintegrates.

I have no idea what is reasonable to expect from the school. Obviously it's not like nursery where they are happy to change him and clean him. But it's not that we haven't been doing everything we possibly can to get this problem sorted.

Anyone started school in this position or is a Reception teacher or TA who could tell me what they would be able to do. We've had no contact from the school bar a pack being sent out, home visit and meeting the teacher all cancelled because of bloody corona.

I found that a whole sachet of movicol was too much for ds once he'd cleared out. Maintenance was half a sachet and that kept him going but not too soft. You have my sympathies as it can be a very frustrating and difficult issue

Maintenance was half a sachet and that kept him going but not too soft.

We did 3 weeks of half a sachet a day and that's what got us to the 8-9 poos a day. Just not sustainable.

It is really frustrating. And although it seems to be such a common issue it seems also to be quite complex and individual and therefore difficult to get help with. Will be speaking to GP again tomorrow to push for a referral.

Today we've had so far just one instance of some almost liquid, small quantity. Which looks like classic constipation but usually this will be followed today or tomorrow but a really good sized, smooth poo that he does with little effort so we are really reluctant to medicate even though on the surface of it seems like that is exactly what's needed.

He cleaned himself up fully and changed his pants and washed hands really well all supervised but totally independent and had taken himself to the loo independently when he felt it coming. So that makes me feel much better about school again. But it's so unpredictable.

On Movicol he would go multiple times a day. All soft but small, about the size of a large strawberry. So he was never getting a full clear out.

Have you ever done the Movicol disimpaction regime to achieve a full clear out? This website is great and explains the process fully: www.thepoonurses.uk/

@DappledThings sounds very similar to my child.

My child also was fine on the flipping Bristol stool scale, even unmedicated. But also got to the stage where they thought they'd have to do a stoma in order to flush the bowels out (I am SURE this is not the case for you, but just highlighting why mentions of the Bristol stool scale grind my gears ).

With atypical constipation, which this sounds like, I would really recommend a good paed gastro - the bowel and bladder service may well just treat along the usual protocols for standard constipation.

I can highly recommend a London consultant we reached after several years with no proper diagnosis, who is world expert on this stuff - pm me if this might be use, even if it's further down the line

Just realised I've not asked the question I usually ask first - as Haworthia said, have you actually done a full disimpaction, or did they just idiotically put you on maintenance dose?

JeanMichelBisquiat We've been on all kinds of doses. Must be nearly a year ago he suddenly hadn't been at all for 4 days so we were put on the maximum 4 sachets a day. Got things moving but not a big clear out. The only times we get big clear outs are when he hasn't been on Movivol for a good few days so it does build up but then passes easily.

But now we have what looks to me like classic overflow spoiling which is new. Smearing before was always more solid just tiny amounts.

So calling GP again tomorrow to see what they think. And I will male sure I have a proper conversation, not just go straight for big dosing which I think they will recommend. So in short no, never done the full disimpaction regimen because it's never been suggested we need to.

Thank you all for sharing. It's really good just to get some other opinions and experiences.

I have been looking up private consultants. The other thing is that DH actually works in the hospital and knows the doctor who leads their paeds gastro so is going to see if she wouldn't mind a conversation informally as well as chasing a formal referral.

Yeah, 4 is max maintenance dose - for disimpaction you need to go much higher. See www.eric.org.uk/pdf-a-parents-guide-to-disimpaction. If you're getting overflow soiling you def need to do a full clear out.

Sounds like a really good idea re your DH having an initial chat.

I would agree that it sounds like he's constipated and having overflow soiling. I think it's about 7 or 8 sachets to clear impaction. Good luck with the gp.

@Misty9

I would agree that it sounds like he's constipated and having overflow soiling. I think it's about 7 or 8 sachets to clear impaction. Good luck with the gp.

It does seem so. The last 2 days have suddenly been the classic overflow soiling. This thread has been really helpful in making me see that possibly all the different iterations of issues we've had have maybe just been different types of constipation. But we thought it wasn't that becuase poo was always coming and in good amounts, just inconsistently.

It was on HV advice that 5 or 6 weeks ago we stopped the Movicol altogether because we thought all it was doing was stopping him from forming full pools and she agreed. And then we did start seeing much better poos about 3 times a week with far less soiling. Some days was none at all which is why we didn't contact school.

Then suddenly it's really increased again and now we have this proper overflow. Will confirm GP agrees tomorrow then start the disimpaction.

Means he will have to miss his very last week of nursery. I am so sad about that. Won't tell him I am of course but I can admit here I've shed a good few tears tonight.

I can’t advise on this but wanted to say I think you sound like a great mum and you haven’t let your son down at all. It sounds like you are working really hard to cover all bases for him. We are living in unprecedented times and even things which are normally simple are so difficult. Please don’t feel guilty. I have everything crossed for you and your DS.

The bladder and bowel nurse we’ve seen always says that in the case of overflow, you need to do a ‘clear out’ to the point that it’s like gravy, and then reduce the Movicol to a maintenance dose. I was obviously quite resistant to this idea but she was right. The soiling is a clear sign of constipation and it can’t be left. Is he drinking enough?

And you have my sympathies. It’s not an easy situation.

Gunpowder Thank you, that's so kind.

Doyouwantanothercuppa I think so, he's always drunk well and I think we are covered on that front. After disimpacting is there any expectation of how long the Movicol needs to be maintained? Is it years?! Have you been advised to try removing it entirely again at any point to see if it is still needed?

OP please don't worry, you sound like a great mum who is doing all you can!

I am a reception teacher. What actually is it that he needs help with in school? You may find school encourage him to clean himself up and take a more supervisory role. I have had a previous child with this exact situation before. Parents packed a little extra toiletries bag in the school bag with nappy bags, wipes and underwear so the child could just grab that and take it to the toilet. Yes school need to hell but we also need to be enabling the child to meet their own personal hygiene needs.

I do agree with a pp who said the problem is staffing. 2 days a week I am alone with 23 children and our toilets are down the corridor slightly. I cannot leave the majority of children to go to the toilets to help another child. It's a sad state of affairs in schools at the moment with staffing and budgets but in a reception class of 30 there legally only needs to be 1 teacher.

Between now and the start of school could you try and get your child as independent as possible, cleaning himself up, changing pants etc?

I was told that the treatment/ maintenance needs to last twice as long has the problem has existed.

Sodium picosulphate was a game changer for us and a referral to the continence nurse who prescribed it. Goodluck

Thank you Russell19. To answer your question What actually is it that he needs help with in school? I'm not sure! That's also why we've left it so late to contact the school because I didn't really know what to say. Some days he might need help cleaning himself up because he has either had some soiling or actually some solid poo in his pants. But some days he won't need any help at all.

I hope now that we get the impaction sorted and then with a maintenance dose that he will drastically reduce his soiling. That hasn't been our experience of being on it previously but maybe it needed a bigger dose to clear out first. But then amidst all of those he would always have random days where he would have a massive clear out but still with tiny ones and soiling days either side of it. We are just so bloody confused!

On the independence side of it he is doing really well. He mostly just needs some supervision and someone to pass him wipes. Getting them out of the pack one by one without them sticking together is difficult. He knows to put dirty wipes and his pants in a nappy bag and to change. And he knows paper goes down the loo and wipes don't. He told me a story today about a giant squid who was very naughty because he put wipes down the toilet.

@endofthelinefinally

I was told that the treatment/ maintenance needs to last twice as long has the problem has existed.

That would potentially mean being on it for 3 years. Depending on when we count it from. Yikes.

My dd took it for about 5 years before she could manage without it.

My ds is still on 2 sachets a day as a maintenance dose and he's 11 now.

@DappledThings so does he tell you when he has soiled himself or leaked? Would he be able to know and ask the teacher for help?
If you cut either side of the wipes hole they come out easier one at a time, I think that issue is easy to overcome. You would obviously need to provide all of these things yourself for school (but I think you know that anyway)
Could you make the days he has a higher dose of medication to clear him out on a weekend? Or is it the in between days that are more of a problem?

Sorry for all the questions, just trying to think of reception logistics that would help you and your son. Do you know where the toilets are in relation to his classroom? Does he have to ask to go to the toilet or are they told to just go when needed (this is what I do in reception because I know littlr children playing often get distracted and don't have much time to get to the loo!)

@Russell19 Fortunately the Reception class has its own toilets just off their classroom which is good.

He really is such a mixture. Sometimes he will take himself but soils just as he gets there. Sometimes he makes it but the last few days it's been so liquid and sticky that it's all stuck to him so his pants are clean but he still needs to be cleaned up. Sometimes he doesn't say anything and will hide. He admits he doesn't always want to interrupt playing but then sometimes he will take himself multiple times in the day and have no soiling, just needs a lot of wiping which he can manage. It's all really unpredictable.

Possibly the answer is heavier medicating at weekends but then when he's been on a low dose is when we've had the most number of small poos all through the day.

GP booked to call me this afternoon. I think we should be starting the disimpaction routine right away and I have enough Movicol to start but DH really wants to get GP's opinion first which isn't unreasonable. We are now both confused as to how we've gone from a few weeks of some soiling but poo still moving through and regularly in large amounts to suddenly him being completely stuffed up.

One of my DC had similar issues for a long time. We weren't as proactive as you on the movicol. These are things that we noticed though:

• Cooked carrots caused constipation like no one's business
• pears are amazing natural laxatives - good combo of fibre, water and natural sugars
• we used dulcolax rather than movicol as a straight laxative. The fibre element of movicol wasn't needed.

Good luck with it. And well done your DS for being so incredibly capable with it all! I'm amazed to hear what he can do! My DC didn't give a shit (ha), so we'd only find out at the end of the day with shitty pants. You're onto a winner already with such an excellent child (not to say my DC not excellent, just not in that department!!)

Cooked carrots caused constipation like no one's business
The only vegetable he eats without complaint!
He will others but only by cajoling and bribery!

He is very intermittent about liking pears (loves them at nursery, says yuck at home) but I will try to up them. When he was really little kiwi fruit used to work a treat but he wouldnt touch that now for anything.

I'm also really impressed at your dc taking himself to the loo and cleaning himself up! My ds, at nearly 9, still doesn't reliably do the first and rarely manages the second! We also had the same presentation with occasional big poos but constant soiling, and concluded that even withholding for one time can cause the issue. The muscles lose their tone which can contribute to the problem. Does your ds wet himself much? That's often the first sign that my ds is backed up as the poo presses on his bladder and he just can't control it.

I'm not sure what has helped, aside from ds getting older. He's never really seemed to care that he poos himself (despite me not reacting particularly well when he does ) or smells, and he won't stop playing to go to the toilet still. The toilets were in the room in reception and y1 but it made no difference. As a rule, ds needs to go once a day to stay regular, and this is best attempted after dinner or before bed. Blowing helps, but I can sit him on the loo for 10-15mins and nothing will happen. So I just have to trust and hope that he'll figure it out. Sometimes I find bits of poo in the house and then I know he's had an accident... But your ds sounds much more motivated so hopefully it won't drag on for years. My ds is most likely autistic, which is part of the issue I think.

You sound like a lovely mum, and that you handle it very well

Ooh, dried apricots and prunes help here