advise please about chronic constipation still at 18 months old

[NessaWH123]

Hi I am looking for any words of wisdom as the doctors and consultants are useless. My son was born 4 weeks early by planned c section as I had vasa praviea and since then he has always had bowels complaints. When he was younger he had many episodes of diarrhoea and passing mucus and was told he might be dairy intolerant. He was on medicated milk until the age of 12 months and we controlled his diet to be dairy free .As he moved to solid foods he then became very constipated and has done ever since. Sometimes the chronic constipation can result in us having to use suppositories. He is often sick from all the straining on a very bad day and is quite tired. He doesn't have a big appetite and no appetite at all when badly constipated. He strains and cries a lot when trying to poo and often he efforts can go on all day with no results. He has now been told to up to 10ml of lactouse twice a day which have done for 6 months but he still has very bad episodes built up every few weeks. We have read about hirschsprungs disease as it was vaguely mentioned by the doctor on our many visits to ask advise. Any ideas would be grateful? Thanks

I would strongly suggest that you go back to your doctors and ask about movicol. Lactulose is what used to be used before movicol was invented, and for 99% of kids movicol works much better and is what is nationally recommended.

Treating a toddler who has been constipated for so long does take patience...but patience on the right treatment. The first question is whether or not he has a backlog (hard poo that can be felt in his tummy - I presume someone has checked for this?...also suggestive if he ever swings between hard poo and diarrhoea) If he does have a backlog, then that needs clearing out before much progress can be made. If he doesn't have a backlog, progress can be quicker.

Sciency bit: the last bit of the gut is like a stretchy squeezy hosepipe, which sits empty waiting for poo to come along. In someone who is not constipated, a wave of pushing brings poo down into the last bit of the gut, which gives you the sensation of "oops, need to find the toilet before long". If you're constipated, then poo stays sitting in that stretchy hosepipe. It might start because someone hasn't drunk as much so the poo is harder, or it might have hurt to poo last time so they don't want to, or they might just have poo'd out a bit, and not all of it. But some poo is left in there. And the longer it is in there, the more water is sucked out of it, making it harder, and drier, and more difficult to pass. In the meantime more poo is coming down for higher up, but again, not all the poo in the bottom end of the gut is pushed out, so more and more builds up. All of it getting harder and drier. This hard rocky poo starts stretching out the walls of the stretchy squeezy hosepipe. So now you have a big baggy area of gut, which because of that isn't as good at pushing (or at knowing when there's a natural wave of pushing, which might help the poo come out), filling up more and more with poo that's harder and harder to push out. Sometimes things get so blocked up in there, with the gut trying to push through stuff that won't move, that squidgy poo from much higher up leaks past, looking like diarrhoea. The hard poo can also hurt to come out, leading the poor kid to start trying not to poo. Oh, and the bumhole can start to get stretched by all the weight of the poo higher up, so sometimes they start leaking little bits of poo.

Now, if you or me ended up that constipated, we'd be pretty much stuck that way. Kids, thankfully, are as good at healing up on the inside as on the outside. But the gut can only "unstretch" and heal up, if nothing's stretching it up any more. So if there are loads and loads of hard rocks in there, those need shifting. Even if there aren't loads of hard rocks, the poo needs softening, and keeping soft for long enough for the gut to heal up (usually months).

Treatment: at this age, the main treatment for almost all kids is movicol. This is a powder that can be mixed into any non-boiling liquid. The idea is that the powder hangs onto the liquid and takes it down into the gut, softening up the poo. In low doses, it just softens things up. In big doses it can helpfully dissolve away the old rocks of hard poo. Lactulose is a softener too, but only really works to soften things up a bit - great for slightly constipated small babies, or someone who has only just become a bit constipated. But really not much good for a child with longstanding constipation. The other problem with lactulose is that because noone is expected to use high doses any more, because if they need a high dose everyone expects them to be on movicol, the dose book that GPs have to follow only gives pretty small doses. I remember doing constipation clinics before movicol was invented...30 ml 3 times a day was pretty common in small toddlers...and still didn't really do the job. Suppositories/enemas - can occasionally be useful if they're in a lot of pain right now but they only really shift the very lowest bit of poo, and not the rocks higher up, and quite a lot of the experts worry that they make the small child focus even more on their sore bum.

The clear out: if they need a clear out (which it is pretty much impossible to say over the internet, - sorry) then this is done by giving steadily increasing amounts of movicol over about a week, until you have at least 3 days of enormous emounts of gravy-like poo. That seems to be about the point at which almost all of them will have cleared out all the rocks.

After the clear out/if they don't need a clear out: the poo needs to be kept much softer than "normal" to let everything heal up. This tends to translate to as much movicol as it takes to achieve "daily pain-free passage of soft poo - approximately the consistency of scrambled egg". how much movicol that takes...anywhere between 1/2 to 4 sachets per day. And it's really important to keep that poo soft for months, to get everything nicely healed up, then only reduce the movicol very gradually.

Food/diet: it is, of course, really important to encourage lots of fluids, and fruit and veg. But that won't work on it's own...it's more about if you can persuade him to do really well with those, he's more likely to successfully come off the movicol sooner.

Underlying causes: Cows milk protein intolerance is pretty effective at giving them constipation. You mentioned the constipation came from when he was weaned. Had you been advised to wean dairy free, or was that when he started having dairy again? If that was when he started having dairy again it might be worth trying a couple of weeks dairy free - nut milks and oat milks seem to be the favourite subsitute at this age - but it might make no difference. And if it did help, and you decided to stay dairy free, you'd need to see a paediatric dietician to make sure about calcium intake etc. The other (unlikely) thing that can be a cause in children who start with constipation when they're weaned is coeliac disease (full on wheat intolerance) - it's unlikely, but might be worth asking if it's been ruled out. Hirschsprung's - even more unlikely, but not saying impossible. Usually the kids with Hirschsprung's are constipated from the very start (not from when they are weaned). The big warning sign tends to be if they're still constipated despite full constipation treatment. So that would be had a clear out, and on a decent dose of movicol every day, and still not pooing....and in particular if struggling to pass soft poo. So it might be worth testing, but as it involves an anaesthetic/camera test, probably well worth checking the response to a decent level of treatment first.

Hope that helps/gives you some ideas about what to ask.

A "useless" doctor

Wow, what a comprehensive post!

Thanks for that Coolname! Very informative. Think my toddler has this problem and has been prescribed movicol before

Well, I think nocool has covered everything

Just to give you another story, my oldest DD was chronically constipated from before weaning. She was investigated but they diagnosed an immature bowel (i.e. she'll grow out of it). She was on Movicol for about 5 years (from the age of 1 to 6). The paediatrician started her on a high dose, then suggested that we titrate it to the level that meant she could poo comfortably (he was of the opinion that parents who saw the child every day were better placed than him to decide what was needed). As I said, she stayed on Movicol for some years then gradually we stopped using it. We've had probably two incidences of constipation since she was six and she's now 10, and has no problems.

Hope it works out as well for your little one.

Wow thanks for the advice. I came here to give advice but looks like cool jas beat me to it!

All I can add is there are other medicationsthat can be added too. Picosulphate, docusate and movicol.

If cool comes back would love your perspective on ds... Please .

ds is4.he had meningitis and sepetcmia at 5weeks old. Hes had horrific reflux to the extent that he now has a peg feeding tube in his stomach to feed him and has done fir 2 years. His original diagnosis was failure to thrive due to reflux and food aversion. Then founf he was allergic to cows milk and soya and eggs. Did 6 weeks dairy and egg soya free diet and his constipation was bettwr but not 100% resolved. Hes suffered with constipation from day0 like the reflux. He did pass stool within 24hours after being born. Hes been on Picosulphate docusate movicol and lactulose and liquid paraffin and was still constipatwd (cleared within 2weeos ofstarting paraffin) and the hard stool was seen on xray he had bowel prep to clear him out too and that didnt work. He was constipatwd for 12 weeks!

Wouldnt let me add any more
hes now under gastrics.
He was losing weigjt and at 18months was close to his birth weight.
He is under paed for autism and adhd.
Hes still very refluxy and goes around 1/2xa week.
We've had to stop the diet and is on normal food so we can help his oral food intake as he stopped esting completely on cmpi diet.
What do you think? He goes for endoscopy and colonoscopy soon.hes had ulcers inside his stomach once found out via endoscopy due to blood coming back in his aspirations out of peg.

He has black blood specs in aspirations and in his stool thwy have been mucusy too. Hes had ulcers in his mouth and has complained a fair bit about his arms and legs hurting. Gastric thinks inflammatory bowel disease like chrons.

Obv I know you cant diagnose like this etc before I gwt flamed but having another dr look at his case and give their opinion is useful and might see something we've missed out on.
Sorry op for hijacking thread

Should also say sorry for typos on phone

Thanks do much for the very comprehensive answer nocoolnamesleft it is much appreciated. I have been to the doctor now and have got movical. The doc did feel my sons tummy and said there was a lot of poo in there despite having had 8 poos that's day. He is crying so much when he does goes even though the last couple were a consistency of playdough and he has been sick over the last couple of days with constant straining all day long. The problem is he wont drink movicol at all I have tried it in different juices and milk but he refuses. As he is 18 moths and dosent really communicate well yet I cant explain the need to take it or bribe him!!! any other suggestions how it can be taken please or any similar products as I am desperate to help my poor little boy.

I made some suggestions on your other thread - mixing with squash, giving it first thing when he's thirsty, etc.

Sadly you just have to persevere until he gets used to it.

One other option is to mix the sachet into a tiny amount of water, like half an eggcup, stir well and leave to dissolve. It will look kind of syrupy. Then you can mix that into whatever you like - food, jelly, yoghurt, custard. You do need to make sure he eats it all AND you follow it up with plenty of liquids.

thanks divingoffthebalcony could ketchup be an option and would it have to be a lot? Does he then have to drink a lot of fluids after as the consistency was so concentrated? I know I need to persevere but at 18 months he he wont open his mouth to it its abit tricky to sort on a daily basis. But I will keep trying of course. he isn't a big eater so trying to think of something small to get him to take.

Ketchup wouldn't work. Depending on how many sachets a day you'd need to get down him initially (what have you been advised? He sounds very impacted so I'm guessing 3+?) that would amount to a LOT of ketchup.

My doctor has just given me lactulose as he just wouldn't take the movicol. He been straining all day and finally gone tonight but was massive like an adult's poor little man

I am on my phone so can't add a long post. Very informative post further up. My daughter is 2 and has been on Movicol for over a year having had chronic constipation since 8 months. We add it to her milk at breakfast. I would just say make sure you get the unflavoured one. They tend to push chocolate for children....it's not very tasty!!!

OK iI was told by go t start withonecsachetbut iI reckon that wont b enough so yep but of ketchup overload! Ahshame iI did think i could get the choc as an alternative and make a hot choc and try that but now thinking that may fail miserably tried again lastnight but ccan't get him t takeany of it in anything liquid!! How do Igo about it with food? X

Read my post from 20.55. That explains how you can mix it in food.

My ds has hirschsprungs and was only diagnosed aged 2, although he had major problems at birth it became more apparent when weaning. Late diagnosis does happen sometimes. If you need any more info on hirschsprungs happy for you to pm me. I think everyone else has covered off everything else! I'd echo plenty of fluid and fruit and veg.

Thanks pudseypie what symptoms should i look out for he only goes for a poo with laxatives and tends t strain all day some weeks are worse than others he cries eevery timehe ppopsand about once a week he may go eight times in theday and then dosent go for about 4 days . At times we have t give suppositoriesfor him t finally go. He has a bloated sstomach and often tired x

Sorry Nessa not been on mnet in a few days!
Difficult to diagnose, my ds vomited green bile at birth and couldn't pass meconium very well, although he did pass some. He tested negative at birth for it from a suction biopsy which took from the wrong part. He would get badly impacted with poo and need bowel wash outs at hospital. He always had a bloated tummy and struggled to poo, never had a formed poo. The definitive way to check to hirschsprungs is a rectal biopsy under a general anaesthetic which is done as day case surgery. It's really hard to diagnose. I would push for a referral to a paediatrician who specialises in gastro complaints as a first step. Hirschsprungs is really rare, 1 in 5000, and worth bearing in mind that our paediatrician tells us the most common reason he sees children is constipation but my ds is is his only hirschsprungs patient. So not to worry about hirschsprungs because although it gives you a cause it's a horrible condition and it could just be straightforward childhood constipation. Hope this helps a bit!