10 year old boy with long term soiling problems

[ConfusedBiscuit]

Apologies if you find this unpleasant or TMI.

My ten year old son has had issues with soiling that have been going on for years and have never been properly resolved despite my best efforts. He found toilet training difficult and since going to primary school has had both wee and poo accidents and smearing in his pants daily. He has never seemed fully conscious of when he needs to go the loo and still has to be told to go and sort himself out when the smell makes it obvious that this is necessary.

3/4 years ago I took him to the GP for some extra help. We were referred to a paediatrician who diagnosed constipation, and also the local children's bladder and bowel clinic. He was prescribed lactulose, Movicol, Senna in various doses including several disimpaction processes. Also regular sitting on the loo. None of these really solved the problem.

The last time we saw the paediatrician she decided he wasn't constipated anymore and took him off all medication. His problem is now worse than ever. His pyjamas are always soiled in the morning. His pants are always soiled when he gets ready for bed at night - often so badly that they are beyond washing and have to be thrown away. He tends not to have separate 'accidents' when in a familiar environment - home or school, but for example when he has been on a school trip or in a show he has them regularly making this sort of thing extremely difficult for him. I am also constantly picking up bits of dried poo from the floor at home.

I am absolutely desperate to help him. He is such a lovely boy and his situation is severely life-limiting and there seems to be no way forward. He is starting secondary school next September and I am so worried about how he is going to cope. The clinic have effectively washed their hands of him - I have spoken to them several times recently and they have been very sympathetic but basically have nothing more to suggest. Similarly the paediatrician - nothing makes any permanent difference.

If anyone has any helpful experience or advice I would be really grateful.

Hopefully someone can give some good advice. I have a story instead...

My brothers had this between 7 and 11. My parents tried everything. The first one that got the problem was admitted into the children's ward which started the other twin doing it. Our dad had been on a deployment with the army and it had been a stressful time for the family when they started.

There were reward charts. There were natural consequences like having to do their own clean up (this was when they were older). There were near constant reminders to go to the loo.

The working theory was they knew very well what they were doing, they just didn't want to miss out on play but I do wonder about the constipation thing. This was back in the early 90s, so maybe it wasn't widely known as a cause.

There was poo everywhere all the time, including dry poo crumbs on the floor. It was miserable for everyone. They didn't have many friends because of it.

Then they turned 11 and just stopped . I don't know what happened or what changed. I think my mum just said they were going to start high school and they needed to cut it out. It just stopped.

That's too long a history to try to sort this out over the internet. My suspicion is that he didn't have a backlog anymore when he was seen, and the meds abruptly stopped, but that his rectum hadn't finished healing and shrinking down, so went back to square one. But again, can't work that out over the internet.

Honestly, at this point I think it's worth asking for a referral for a second opinion from a different paediatrician (maybe even a paediatric gastroenterologist, but the waiting list for one of those can be very, very long). Your GP should be able to sort the referral for you.

I presume he's had a blood test to screen for coeliac disease? If not, ask if he can have one. Some kids respond to a period of dairy free diet, if you haven't tried that yet then worth a go. A few children seem to show faster improvement on a decent probiotic.

I presume you've found this website? eric.org.uk I'm told they're pretty supportive, and their suggestions tend to be in line with national recommendations.

The other thing...I presume he doesn't show any signs suggestive of autistic traits? It's just that this is a group of children that can find this whole process harder.

This matters. But needs proper face to face sorting. And I think you've reached the point where you need a fresh eye.

Could be a gut related issue causing this. That'd be something out of his control
There is a chance he's intolerant to a particular food , usual ones are gluten and dairy

My kids are both gluten and dairy free because of constipation issues

Maybe a trial would help?

On what basis did the paediatrician say he wasn't constipated anymore?
Did your son have an Xray?

DS2 had soiling accidents. When to gastro, who felt his belly high and low and said he didn't think there were any issues but send us still for an X-ray which we had straight away and then went back an hour later to him. My son looked like a drug mule, with dozens and dozens if not hundreds of stone-hard poo balls in his belly, everywhere up to his lungs!

He explained to us that reeducation would take a lot of time. When a normal bowel expands because it is filling up, this expansion movement activates nerves that send a message to brain to go and empty. If you are constipated however, the bowel is always enlarged and now message is send, hence only liquid / semi-liquid poo circulates around the balls and leaks and this is when the nerves around the anus feel a movement and send a message but usually far too late and you can't stop it, and sometimes, it provokes an unwanted emptying.
The way to solve this is to re-educate the nerves and to do so, the bowel needs to be back to normal size. Movicol for a while and do not reduce it when you think things are better.

So what to do:

1. book a GP appointment and request firmly an abdominal X-ray . If needed bring those soiled pants with you to make a strong point.
2. if X-rays shows constipation you need to tackle this, movicol and as prior PP said cut dairy. This is what we were told .
3. Try to put regular time of day, say 7.30 am and 5 pm in which you send your son to try to empty his bowel. Give him bubbles to blow while he does that, it helps with opening sphincters.
4. if X-rays prove no bowel issues, ask for neurologist appointment.

Did you son have many antibiotics as a baby or younger age? Mine had enormous amount as he suffered strong reflux and had continuous infections in ears and lungs from the vomit. HE also was on pump-inhibitor and anti acid and all these are proven to give bowel issues. If this is the case for you as well, you need to repopulate the good bacteria and change his diet accordingly.

First step is your GP and an X-rays

The radiology department would almost certainly reject any request from a GP for an xray for constipation, because the national guidance is NOT to do them in children for constipation. They will occasionally be persuadable to do one by an expert. If the consultant wants one they might be able to get it. Hence why the gastro could get one.

We were in Spain at that time and in a private hospital so very different I reckon.

How expensive would a private abdominal X-ray be?

I am insisting on the X-ray, because soiling can have many causes, and if caused by constipation there is one way to address it, if caused by other issues other ways. But pocking the abdomen is not a sure way to determine if constipated or not, as in our case, the gusto was extremely surprised by the X-rays and asked twice if it was the X-rays we were given.

Seems very short sighted of the doctor to take him off the meds. Fine, he may not have a backlog of poo in his gut, but that doesn’t make him “cured” especially if the root cause is low gut motility. Because once you remove the meds, everything rapidly grinds to a halt, doesn’t it?

I can’t offer any suggestions as to why his gut is so slow, unfortunately. I still suffer at 38 and my kids aren’t much better. I keep meaning to tell my life story to the GP in the hope of getting some answers, but needless to say I’m not exactly enthusiastic about submitting myself for unpleasant/embarrassing tests

Definitely speak to ERIC. They are so helpful.

Going through similar with my 8 year old. I can't wash his undies any more as the smell ruins all the other clothes. Watching for advice as I have no answers

I can't help with the constipation issue - DS has just finished with movicol after 7 years on it. I realised that movicol was actually making him worse - he'd been soiling and we'd been increasing the dose to get to the magic 'a poo every two days at most'. GP agreed with me that we should try stopping. DS now poos every four days regular as clock work. Our GP's opinion is that everyone's regular is different and, as long as it is regular, it's fine. DS is now 11 and no longer soiling.

But, although I can't help with constipation, I did find a neat potential solution to the problem of ruined underwear. Tena Men's protective shield. Daft as it may seem, if you turn them round (big area at the back as opposed to the front) they will take the soiling. You then just change the pads. DS used to take one to school with him just in case and they were great for travelling - who wants to try to wash out pants on flights or in hotels?

As they're black they blend in well in boys pants too so they're not so noticeable.

They saved a lot of stress for us whilst DS was going through his soiling problems. I wish I'd found them sooner - got the idea from the ERIC site.

Good luck OP. It's horrible to watch them go through it. Do go back to the GP. They need to do something for him.

I’d be very suspicious that the impaction hadn’t fully cleared and has returned. I’d be pushing to see a paediatric gastroenterologist. In the meantime, the ERIC website is useful.

DS2 was impacted. It was picked up when they tried to do a scope. They couldn’t get the camera where it needed to go as he was so backed up. I think we were lucky because the Movicol worked and after the initial disimpaction treatment he only needed it daily for another year or so. He still asks for “medicine water” if he thinks he poo is a bit hard or if he’s not pooed for a couple of days.

How did you do the disimpaction OP? ERIC are great with advice like this.

My dd has this, but is 5.5. I think you should be asking for further referrals to gastro, or colorectal. Have they scanned him, colonoscopy or anything? How disappointing that the clinic were dismissive. I'm 6 months into the waiting list for this.

So far I had excellent support from the school nurse. Can you contact the secondary school one now? Might need small adjustment like bins in cubical or access to disabled toilet.
My dd is allowed to have squash instead of water, drinking makes a big difference.
Maybe needs a care plan?

How are school with it now?

Have you tried reading the books Eric sell?
I'm assuming you know it's called encopresis, as it may help you get support to know it 'Has a name '.
Then you can give the info to the school.

If no luck with nurse, maybe the senco.

We reward for things she can control, like drinking lots and dealing with soiled clothes.

Sorry if you already considered all of the above. Sending you virtual solidarity.

And we use thin panty liners too.
Lots of cheap underwear from Primark that gets binned for big accidents.

I find the school nurse support really hit and miss.

@KingIrving. I'm interested by your response as dd also had reflux and skin infections, chest infections and antibiotics.

Sounds like my daughter who gets 'overflow type issues, so constipated and complains of a sore tummy you can guarantee she'll have an accident which is just a rapid splatter in her pants - lactulose for a few days helps her

I'd be inclined to try that but also make an appointment as there's no point in messing around just get to the crux again

You will get excellent advice from the ERIC website and help line.
Also google the poo nurses and watch their video on impaction and overflow.
It is ridiculous that it is so hard to get a plain abdominal xray in this country. It really is the only reliable way to prove impaction with overflow.
If your ds has had this problem for ten years you are looking at 20 years of careful, consistent and correct management to fix it. It has become a family problem and you will all need support.
It CAN be fixed so don't despair. It will take dedication and commitment because you are now dealing with a chronic condition.
Your poor boy needs and deserves the correct help.

@CottonSock
During DS2's pregnancy i was given antibiotics for 4 months, because I had lost two babies previously , only at 22 weeks, and because I had trust (even though I only ever had trust during pregnancies, it was for me how to know I was pregnant) , my gynaecologist gave me course after course of antibiotics.
After DS2 was born, horrendous reflux, projective vomit up to the kitchen ceiling, vomit in his ears, lungs, so his first course of AB he wasn't even a month old, and from there quite often and far too easily.
I would go to the paediatrician (we were in Italy at that time) for a small cough and she would say " oh I know him, we'd better give him AB straight away".

So to cut a long story short, he's had massive, damaging amount of AB. Then came the problems. First the allergies, some food and also penicillin, then very easy infection for the smallest cut or mosquito bite, the the soiling, and since we moved in Australia, a new allergy to cat, then sadly asthma and now weird skin issues, which GP first started treating with AB again. Enough!!

I have read medical papers, books, done a uni course on micro biome (www.coursera.org/lecture/microbiome/human-microbiome-and-gut-disease-aM6Qn it's free if you don't want a certificate) and I am now trying to sort his gut bacteria back.
I bought quality probiotics with specific strains for his issues, and also gave him kombucha, kefir, miso and of course I need to feed those bacteria as - in the same way you buy a dog and only feeds him chocolate, the dog will die , you literally buy and eat good bacteria and you only feed them the wrong food, they die after 24 hours - so onions (in a tomatoes and onion and parsley salad) , leek (2 leeks and 5 carrots slices in a pot with water and you have a soup to blend after 40 min), oats, resistant starch. Lots and lots of fruit and veg.
His asthma is better, which was my main concern, his skin also, we haven't had marks on underwear for a while.

Sorry confusedbiscuit if I have derailed your thread a bit.

Every case is different but for those who had reflux medication or worse AB , consider repopulating the gut bacteria. The younger the person, the easier. No harm in trying.

It is extremely stressful for everyone and I am ashamed to say I did lose my patience with my son. He was 7, 8, 9, 10 .... and I couldn't understand how he could not smell it.
He is now 12 and it is now a bad memory. Not thanks to the bacteria as these were introduced only this year, but at the same time, I hope it helps somehow.

thrush not trust.