Laxatives and Sodium picosulphate long term 4 year old

[sleepplease1]

Hi,
We discovered my 2.5 year olds chronic diarrhoea was actually overflow - consultant missed it saying it was toddler diarrhoea! Since then have been under bladder and bowel team (B&B team) who helped to disempact him - with Laxido and sodium picosulphate. He has been on both for about a year. B&B team have basically dropped us as no regular contact or real support just say to try and reduce both drugs ourselves.
I've reduced the dose to 1 laxido a day and less than 2.5 of sodium picosulhate. I'm really paranoid he'll get constipated again and disempacting him was a nightmare for him too, BUT he is constantly complaining of tummy pain, especially around meal times. His behaviour has become more challenging! He's very reluctant to eat normal food other than sweet snack foods - it's a challenge to get him to sit and eat any kind of meal although he does eat some healthy foods if forced. When he does go on the toilet he has lots of wind++ and still a very wet poo which isn't really formed. He is going every day though.
I'm thinking his digestive track is worn out he needs probiotics etc and wondering if anyone has had similar experience? I'm concerned that he's just been left taking this medication at 4 years old - I've tried speaking to nhs about this but get no where. I'd happily go private but don't know where to start.

Have you had a referral to a paediatric dietitian? We found they were the most useful in a similar situation.

And yes - chronic diarrhea causes the bowel to stretch and it can take a long time to return to normal. Keeping a diary (thank you Bristol stool chart!) allows you to monitor and adjust dosage so as to try not to go back to constipation.

Thanks for your message handmademitlove no we haven't been referred to a dietician. I'll look into that thanks

I’ve no personal experience of this with a little one but I’m a pharmacist and went through chronic constipation myself as a child. I wouldn’t worry too much about the laxido, that is an osmotic laxative which brings water in to the stool to make it soft and pass more easily and doesn’t really have an effect on the bowel wall. 1 sachet a day is a very low dose even for a 4 year old and will have very little effect. Now the sodium picosulfate is a stimulant laxative, so causes the bowel wall to contract and causes the poo to be pushed along. This can cause griping pain (especially at meal times when the digestive tract is getting ready to get to actio and night time) and wind. 5mL in a normal adult can cause a very strong laxative effect so 2.5mL in a 4 year old is still quite strong. The problem with stimulant laxatives is the bowel can get used to it so you just need more and more and in essence makes the bowel ‘lazy’ in a way. It is also much more likely to make the poo diarrhea like and acidic, which can cause pain too.
Personally I was left on a stimulant laxative for a lot of my childhood years and left my bowel ‘lazy’ into my mid 20s, even now I still suffer from the after effects in my 30s. Whilst you get help privately or NHS I would try increasing the laxido so he has consistently soft formed stools and trying to get him off sodium picosulfate. Do you think there maybe a part where he tries to stop himself going to the loo too?

My DS was under the care of a specialist paediatric bowel clinic from 3yo to 16yo, so I have some insight here. Are you sure the dose your son is on is effective and his bowels are moving/clearing properly? His discomfort makes it sound like he’s still backed up.

My reason for mentioning this: DS’ paediatrician told me DS’ symptoms were the most resistant to treatment she’d ever seen and it took a daily dose of 12.5ml of picosulphate to get him to a daily BM. That's more than twice an effective adult dose & he was on that daily from about 5yo until his teens, but under specialist supervision (don’t try it at home folks!). He needed to stay on treatment until his teen growth caught up with his distended bowel and we were advised to keep him on treatment to retain normal, regular function until his bowels had matured. We were told it was important to fix it in childhood so he didn’t have continence issues into adulthood, so was no rush to taper his doses down. Regular, comfortable BMs were the clinic’s priority. He switched to tablets at 16 and gradually tapered down to ceasing treatment between 17-18yo. He’s much better now, but still has to eat plenty of fibre & drink lots to stay regular. He was a tough nut for the clinic to track and it took persistence, but he’s all sorted now.

From what you’ve written it doesn’t sound like you’ve cracked your son’s symptoms entirely & he sounds like he’s still bunged up and uncomfortable. I’d see your GP and ask to be referred back to the clinic.

Have you had any contact with the charity eric at all? https://eric.org.uk They’re an excellent resource and have a helpline too.

@Berlioz23 As a pharmacist you’ll know 12.5ml is a huge dose for a child. It was queried every time we filled a prescription. For anyone reading & considering a larger dose, you definitely need medical advice.

I am worried about this too. My 5yr old has been on Pico for 2 years now. We give him 4mls but are looking to decrease this to 3 very soon.
But yes, it's on my mind if we are damaging him however, being full of poo is damaging too..

I’ve got a 22 year old that’s suffered all his life with constipation. His disability causes low muscle tone.

Over the years, we’ve tried them all. Sodium pico-sulphate was one of the worse. Being non verbal, he couldn’t tell us where the pain was but could clearly demonstrate the effects. So we didn’t keep him on that long.

We used to use a high dose of senna alongside movicol (identical to laxido). As the pharmacist said, laxido makes it soft and senna ‘squeezes the bowel’. But senna seemed less harsh than pico.

I would get another referral back to a paediatric gastroenterologist. Our son would occasionally have a test where he ate (tiny) markers over 5 days then had an X-ray to see how quickly they’d moved through his bowel. That helped the doctor treat him.

A dietitian referral is a good call as well.

Our son now just uses movicol where we titrate between 3 and 6 sachets a day. He never goes more than a day without a poo, otherwise we’d use a suppository.

I think what I’m trying to say is, don’t worry about using laxatives like laxido, but just keep his bowel moving.

Good luck.

12.5mL is a MASSIVE dose, I believe 2.5mL is what the OPs DS is having though but for a 4 year old 2.5mL can still have a massive effect. And sodium picosulfate should not be used long term, there’s been leaps and bounds in treating childhood constipation, stimulant laxative should only be used as a last resort really. As I said it’s the osmotic laxative that needs increasing (laxido), NOT the stimulant ( sod pico)

Yes, definitely a massive dose & the last resort after the paediatric specialist had tried everything else. I never minded pharmacists querying the dose because it was so unusual.

He was o an enormous dose of Movicol too, but it wasn’t shifting things. Its a while ago now but I think it was 8-10 sachets and still no benefit.

Poor thing, sounds like he was very unlucky. Most children are adequately disimpacted with 8 sachets (and adults for that matter), obviously children hate it but did they not try an enema? In the long run it’s much kinder

Thanks Berlioz23, yes I'm keen to get him off the sodium picosulphate. I've been reducing down to 1ml but a little worried about increasing the Laxido in case it gives him diarrhoea. Will try this though thanks for the suggestion.

Thanks for your message Edamummybean.i don't think he is still constipated as he had a long time on the high doses during the disempaction regime and we recently went to the gp because of his tummy pain and she examined his stomach and said it didn't feel hard etc I am paranoid about him getting constipated again as disempacting him was so traumatic for him as well as us! Getting 8 sachets of Laxido into him in one day when he hates the taste!
Did they say what caused your son's constipation? They have just said to me that some children have slower bowels so are more prone to constipation than others.

@ParkerPyne thanks for the link 👍

@Hungrycaterpillarsmummy sorry to hear you're in the same boat it's hard isn't it. I definitely don't want to go back to him being constipated!

@Edamummybean thank you for your post, I’m in a similar situation with my 3 year old. I don’t suppose you might be able to message me the name of the bowel clinic, please?

@Anewuser that's interesting about Senna, we've not been told about that before. Something to look into. I'll contact his gp on Monday about a dietician referral.

And I forgot to say, you mentioned a probiotic. We give our son Kefir every day. I don’t know whether it makes a difference but doesn’t do any harm.

He was referred by our GP to the specialist NHS clinic attached to our local trust. Speak to your GP.

Hi OP where are you now with this journey? My ds has coeliacs disease and constipation is his big issue, he's only been GF for 4.5 months so we're still in the gut healing process. He's on 3 laxido per day and has a bowel movement every day and the stool is soft however not much comes out in each movement and he still has to strain. His consultant did give up Pico sulphate and said to try 5ml dose but I see on the box that's the adult dose and he's only 10, I'm nervous to give him that. He's very prone to getting dehydrated very quickly so I don't want to give him diarrhea 🙈

@Nogodsnomasters thanks for your message and sorry to hear about your ds difficulties. How have you found cutting out gluten? Has it made a big impact?
An update on my ds situation: I contacted ERIC and spoke to a wonderful nurse who seemed more knowledgable than our bladder & bowel nurse. She advised that there is no harm in increasing his laxido to see if he is constipated so we waited till the Christmas school holidays and did that. Turned out he was severely constipated again and his poos had been overflow. We went up to 4 days of 8-10 movicol sachets and 10ml sodium pico before he was cleared out. He's been taking liquid iron too following low iron results.
We saw the consultant and had more bloods which show as all normal. His iron has increased.
We have reduced down to 3 sachets of movicol and still on 10ml sodium pico. Initially we had very good poos but now they have returned to quite loose poos again - but like cow pats. But he goes 3x a day.
During the holidays we also helped him to start using the toilet rather than the potty so he now uses the toilet at school.
I'm still not convinced he's clearing out completely. Although I don't want him to be on the meds I feel like we have no choice.
We are waiting for input from the nhs dietician too. So far I've not eliminated anything from his diet, am wondering if a private dietician or nutritionist could help more?

Honestly I thought after 4.5 months of GF we would have more of an improvement than this with his bowels but his consultant keeps telling me it can take a year to heal the gut after a coeliacs diagnosis. Has your ds been tested for coeliacs? The low iron is also a symptom of it and one of the things my DS struggled with too and needed supplementing.

You could try eliminating lactose or dairy and see if any difference, but don't eliminate gluten until he's had a coeliacs test as it will just give a false reading.

I'm thinking of starting my son on a very small dose of the pico sulphate (maybe 2.5ml) alongside the laxido, I'm just very nervous of it creating diarrhea - he's been admitted to hospital for dehydration twice in the last 12 months due to diarrhea or vomiting and both times it happened quite quickly and was very traumatic for him (he also has autism). It's such a minefield isn't it? I honestly feel like I think of nothing other than poop and the monitoring of it!!

@Nogodsnomasters yes my DS has been tested for celiac's and it was negative although I'm not sure if that could change in the future.
I agree that all I think about is his poop and toileting habits! It must be challenging for you that your son also has a diagnosis of autism. How old was he when you found this out?
I understand what you mean about being concerned about fluid levels and dehydration if you were to give him laxatives. Is there anyway they could scan to see if he's constipated. As I said we didn't realise at all with DS as he was still having bowel movements. The consultant even felt his tummy and didn't think he was!! How about electrolytes to help with dehydration could you try those?
I'm going to contact the bladder and bowel team today as im really not sure if he's constipated again despite the high dose of medication we've been giving him daily. His poos are very liquid, explosive and he's been soiling in his pants again. I tried reducing the laxatives but that didn't seem to help. Just feels like a loosing battle sometimes.

@Nogodsnomasters also just to say I don't think the sodium pico would cause diarrhoea as kits just a bowel stimulant. So just acts to push the bowel contents through. Can take around 8 hours to work and my DS did just tummy pains on it occasionally as now we give it at nighttime