Six-year-old soiling again after treatment and we are struggling to cope

[AmpleHam]

I, and my partner, are completely at the end of our tethers, hence asking for advice please.

Our 6 year boy has been soiling and pooping his pants for around 2 1/2 years after successful potty training. He’s been through disimpaction twice and is under a bowel and bladder nurse but he ends up back where we started. He soiled himself 6 times yesterday. I just don’t know what to do. We’ve tried timers, books, games to keep him on the toilet, no joy. Consequences, rewards, no joy. He’s showing signs just doesn’t seem to care.

He’s showing signs of adhd, pda, or similar. Has seen a psychologist at school but she seems to be focussing on his apparently high sensory needs and all she has suggested is giving him crunchy things to eat…helpful!

He also steals food and drink all the time, hides it, quite deviously.

He clearly listens to what we say, but does what he wants to anyway. He’s unmanageable, and causes endless chaos.

Is this normal?? Are we expecting too much?? We honestly feel we can’t cope any longer. I’ve tried to contact the GP, but they are constantly unavailable due to high demand. Just feel we need some kind of support, help, anything.

Most days I’d rather be anywhere rather than here. I’ve never been more unhappy than I am now.

Sorry this is a bit rambling, reflects my mindset, has anyone got any suggestions?????

Put him in pull ups for now

Contact Eric an online organisation who can help with this

Try not to be frustrated at your child - this is not his fault and he does deserve love and patience

Look on FB for online support for yourself too

Our DS had continence struggles for years and still takes a small dose of sodium picosulphate daily. Before he had medication he was constantly soiling. So I would recommend going back to the continence team and exploring ongoing medication.

Try and listen to the psychologist even if it seems unconnected. The suggestions might help with his unmanageability and help things fall into place a bit more. Sounds very tough. I'd recommend Eric too. He'll get there.

Is the school nurse involved? I’d be seeking a referral to a Paediatrician.

Once you’ve been through a dispatching regime are you just stopping thinking it’s sorted? You need to keep up a maintenance dose for years till his bowel has been retrained.

This.
Whats happened meds wise since then?

No, we haven’t stopped, we’ve been following the advice of the bowel and bladder nurse to no avail. We are honestly trying our hardest to sort this for his sake as well as ours

What medications is he on? Sounds like the dose might need adjusting. All kids with idiopathic constipation are different so it can take some going up and down to find the right dose. My daughter bizarrely requires a sachet and a 3rd of movicol. One and a half causes diarrhea. One sachet means she gets backed up. And the we give a small dose of picosulphate at the weekend to have a bit of a clear out.

could have written this- my child did this from 3-9years old. They have adhd and pda.
we tried everything and I was heartbreaking and so tough and stressful I feel for you. In the end what worked was realising it was about control . At this age they can control really only two things, what goes in their mouth and what comes out.

we kept trying different things and in the end it was me sitting with him at the end of the day before bed, after he’d brushed his teeth and had a story etc. and I’d chat to him about things which interested him and I’d try to make him laugh. When he laughed he relaxed and went. And we held this routine probably from about 8- nearly 10 when he was due to go on a residential. Then we tried to withdraw from needing me there. It was successful eventually but that’s another story. Blowing bubbles also helps. But we stopped rewarding and we stopped putting pressure on.

even now in the holidays or when we are out of routine he can have the odd accident. But I now know it’s a distress thing cos he can’t cope with the change but he doesn’t know what to do or how to express himself.

he’ll get there. But it’s so hard. Be kind to yourself.

as for the endless chaos I hear you! We channeled it into sport/ just took him outdoors we’re never in!! And in that environment he thrives. Indoors he’s like a manic monkey! Forests/ tree climbing/ different parks for the novelty. I’m dreading winter again, but if he’s outside he has learned to tick along ok.

Thank you you’ve given me perseverance x

6 times in one day is quite a lot, we had a similar situation with our son but not to that extent, it turned out he had a big blockage in his bowels so unfortunately can't really give much advice.

Has he got any underlying allergies/intolerances that could be causing him to be soiling so much?

Definitely keep on at the GP, School nurses & the bowel and bladder nurse.

Hope you manage to get some help soon

What's he on now?

Have they recommended to sit on the toilet for about 5-10 mins, 20 mins after hes eaten so three times a day?

We’ve been advised to double the picosulphate to 5mg and possibly decrease the sachets depending on how it goes. We do try and get him to sit on the toilet 20-30 minutes after meals but that’s easier said than done. He never admits to needing a poo even when it’s obvious he needs to go.

How many sachets was he on before? I think we got up to about 8 for disimpaction and then once that was done, we did a week of 7, week of 6, week of 5, until we got round to 2 a day which lasted for months and now two years later we’re on 1/2 a day.
The nurse told me it can take months.

We do toilet sits with an iPad. She asks to do them because of that! We have the same ‘I dont need it!’ The toilet sits got rid of I’d say 70% of the accidents. We do them twice a day now.

And as her bowel started to go back to normal the other say 20% of accidents went away . We now just have the occasional one.

Sympathies OP, I've two 2 DC with chronic constipation. Eldest is autistic and the first GP I spoke to was totally useless, said it was behavioural and blamed the autism when in fact it was impaction and needed medication to disimpact 😡

If your DS has had 2 impactions he's probably got very little physical sensation of when he needs to go as his bowel would have been so stretched by the backup of poo.

Can you ring and ask for an early review from the bladder and bowel nurse?

eric.org.uk is a great website and they have a helpline, which I've not used personally but is apparently fab.

Movicol Mummies on Facebook is great for solidarity although some of the advice/ med regimes are a bit unhinged so read with caution.

We ended up letting DC watch the tablet whilst on the loo twice a day for 20 minutes at a time. Not my proudest parenting moment but needs must, and for both DC it made a MASSIVE difference.

Has he had food intolerance testing? My dd was fructose intolerant and soiled from potty training until about 6 when we discovered the cause.

Show him some videos on YouTube of stool withholding

Also definitely allow him to wear pull ups

I am so sorry you are going through this. We had the same thing - our DS, at this age, also soiled up to 10x a day. We went through multiple disimpactions which improved things in the short run, but not in a sustained way. What helped us in the end was

1. a strict toilet regime. He sits for 10 minutes in the morning and 5 in the evening. No tablets for distraction. In the morning, we decided on a 5+5 system - if a big poo comes in the first five minutes, he can come off. If not, another five minutes. But no more than 10. Very soon we got big poos every day
2. Movicol / Laxido Maintenance: maintenance doses after disimpaction. For a long time, we were on too big a dose and were actually advised to tone it down because the muscles haven nothing to press against when pooping. We then learned to 'read his poo' very well, which led to us constantly adjusting up and down.
3. Senokot as stimulant. He is on a very high dose (30 ml a day), but it was a proper game changer.

I absolutely agree though - it is hard to get support with this. Our breakdown came when we went to a private consultant (just one session at around £250). This consultant then referred as back to the NHS, but to a different team within the hospital - absolute game changer.

By the way, age 10 we are in a very different place now. No real poo accidents any more - wee accidents now a bigger problem but we are improving on that front too. I am a mum to my son now, not a nurse. At age 6 there were tears (on both sides) every day.

Happy to DM. I know how hard it is.

My son was very similar, and the major gamechanger for us has been bisacodyl suppositories, prescribed by bladder and bowel. Took some persuading to give them a try but they've helped him so much - we do one every morning after breakfast followed by a toilet sit which gives a reliable before school poo, and then he's soil free for the rest of the day. Been on them about a year now and I'm seeing a signs that he might be ready to wean off - his awareness of needing to go has improved enormously and his bladder issues (related to long term constipation) are so much better too. We spent a lot of time trying to figure out doses of movicol/senna/picosulfate with no success, but the suppositories have been like a miracle. I think they've really taken the stress/unpredictability out of it all for him and given him a safe routine to "practice" noticing feelings and self initiating going to the toilet. He did a spontaneous poo on the toilet at his friends house the other day and was SO proud to tell me, this would have been absolutely unheard of 18 months ago.

Also just to add that I massively relate to being at the end of your tether. At times my sons toilet issues have had a really negative impact on my mental health, it is SO hard. I promise it can get better though, a year ago I was thinking my son was going to still be having issues in secondary school (he's in y4 now) but now I don't think he will, he's made massive progress in the last 6 months alone. I think it's partly the medication but also partly just various developmental/sensory issues (poor interoception etc) becoming easier for him. What helped me not lose my mind was accepting that it wasn't his fault, that there was no magic fix and focusing on helping him manage clean up etc more independently until things improve, likewise setting up my house/bathroom/laundry situation to make my own life easier (e.g. a basket of clean pants that live in the bathroom, buying a "strucket"). You're doing great, people with no experience of these issues have no idea how hard it can be/how nice it must be to take for granted that your kid will use the toilet!

The bowel and bladder nurse has been pressing us to try suppositories with him as they’re so much more reliable but I’m fearful of that. He has some really weird behaviours like sticking his hands in the toilet, smearing poo round the bathroom. I really wouldn’t put it past him to put other things up his bum if we went there. I just can’t quite believe this is our life

Thank you, I’m going to try your 5 + 5 rule! I suspect he’s lost all sensation along with his other issues. Just hoping the stimulant helps with that. Failing that, it’s probably worth going private. It’s so frustrating, these nurses are lovely but no one actually meets him or examines him, it’s all just phone calls

We bought a little timer from Amazon and he set it himself. The consultant said it is better if toilet trips are time-bound. Previously, he would sit for 45 minutes with a tablet. Very soon his tummy got used to doing big poos quickly, which then reduced the accidents.

I got a sand timer off Amazon which my child used at school when she was doing her midday toilet sit. At home I get her to sit there for a while on the iPad. Maybe 5-10 mins. If nothing happens she can come off- unless she’s not been for over a day and then we’ll give it another 5. But usually the first 5 is enough if she’s going to do anything.
I can not emphasise how important the toilet sits are. She’s on barely any meds now.
I got nearly all my advice off movicol mummies and a very helpful school nurse who spoke to the school and advised she did a toilet sit at lunchtime.

@fashionqueen0123 It seems as if you are running a very similar system!

The consultant emphasised to us the importance of not making him sit on the toilet too long, but at the same time keeping the whole focus on the toilet (hence no tablet and the limitation to 10 minutes). My son himself came up with the 5+5 system. Generally, he did his toilet sit before breakfast (it just fitted better). If the 5+5 did not lead to any result, he would also do another 5 minutes after breakfast, which then often worked. These days, we are close to 100% success after the first five minutes.
I figured out that he needs a very high dose of Senokot when I forgot the measuring cup on holiday. We were on 20 ml beforehand, and that only led to limited success. I think I accidentally overdosed him, and he had the biggest poo ever recorded in a six-year-old, but no accidents at all that day. We then asked the consultant whether we could increase the dose, and they were ok with 30 mils. He is still on 30 mils now, but I think we might soon be ready to decrease it.
One other thing we did for a while on the Laxido front - all approved by the Consultant by the way! We used to swerve between a low dose (i.e. 1 sachet) and a high dose (i.e. 3 sachets). The principle was to firm things up one day and flush them out another. Worked a treat for a long time, but is not necessary any more now.
Over the years, we have decreased the Laxido down to 1 dose. We also rarely need to vary the dose now. Only if he doesn't do a poo for more than a day, we give him 3 for a mini clearout and that generally is enough!
Except for the private consultant we saw, I also got most of my best advice online. There is an encopresis forum on facebook which was helpful. GPs are generally useless with this condition, as are some hospital consultants (our first one wasn't great until we were referred to another team).