Children’s chronic constipation

[Bridgettvs]

Hello, I feel like I’m totally out of options so thought I’d try here. My daughter is 8 and autistic and totally backed up with solid poo, soils 24/7 without feeling it. Been like this since she was around 5.

we were referred to bowel nurse years ago, tried movicol in everything - jelly, ice lollies, stews, different drinks. She can taste it straight away. We’ve tried time and time again over the years to no avail. Pico and senna is the only laxative we can get into her but as she is so blocked with hard poo I can’t give her it as it’ll cause bad pain and her passing very large blocks of poo which is awful of course.
lactulose does nothing.
dulcoease OTC worked well but it’s been discontinued. Liquid paraffin is too oily so she can taste it.

im out of ideas. She of course refuses things like suppositories and enemas, although has had a few enemas when things got really bad.

bowel nurse referred to paediatrics as she can’t do anything but prescribe medication, paediatrics done blood tests and referred back to bowel nurse. Still waiting for appointment which could be months as she’s overwhelmed with work.

any advice? It’s so sad seeing her struggle with her soiling 😕

Oh I am so sorry.

Both my children suffer with constipation but luckily both will drink the powder with squash. I don't like giving my two year old sugar free squash everyday but I can't really help that.

If she doesn't have the powder every single day she gets constipated.

Have you looked at diet at all?

With my son it was dairy- or was the main culprit.

Also I'm not sure if you have read that there can be a link between autism and constipation (my son is autistic too).

My DD has had bowel issues since birth. She would pass dry, baseball size and shape stools since weaning age and it was so distressing. It really damaged her bowel and she ended up with mega colon and soiling issues. She is 12 now and we developed our own plan to use the bathroom twice a day for 20 mins, morning and evening. It turns out she was just holding onto her stool without even realizing due to the ND. Prompting really helps. At first it was difficult for her to stay on the toilet when she didn't feel like she needed it, but I bought her a kindle and she reads while on the loo or sometimes watches an episode of something on her iPad. She is now opening her bowels regularly and her stools are normal sausage shape. Re the movicol, could you ask for a prescription of laxido? Dd has it in an air up bottle once a day or mixes with a little fruit juice. Dd has autism but I had to be frank with her about the consequences if we didn't take control of her own bowel health.

You mentioned lots of meds but what about diet?

Thank you for your answers. Paediatrician recommended going dairy free for a while, which we did but she still has soiling and because she didn’t like the dairy alternatives her already restricted diet was even worse.

I could try an air up bottle but she hardly drinks, even when prompted- which obviously makes things worse.

me and doctors have tried to explain to her but she buries her head in the sand unfortunately- any Medicine I’ve tried I’ve had to hide as she won’t willingly take it as she doesn’t WANT to poo.

@flowerchild2000 her diet is awful, all bland beige food and hardly drinks. It’s something we’re working on but she’s autistic and has a very restricted diet.

Sounds like she could have some trauma from her toileting history OP. My girl would wait up to a week and sometimes over to get rid of her poo as she was so scarred by going to the toilet. I realise there's a bit of an age gap and like i said we've only just started to see progress once our DD started secondary school. Autism makes things difficult so I sympathize. Could you try a reward system for the toilet sessions? DD was so reluctant at first that I had to go to a different toilet at the same time and we would have a 'watch party' of friends to take her mind off sitting off the toilet. It was tedious at first but pretty soon she got into a routine and now she knows that she can be regular if she keeps her toileting routine even if she doesn't 'feel' she needs it. You have my sympathies it's such a stressful situation. Also try some probitiocs, we get some chocolate balls from Holland and Barrett, one a day seems to help soften the stool.

@Isthatascratchonmygrandmother thank you for your advice. We’ve also tried the chocolate balls and she won’t take them either 😅 says they taste weird 🫣

Bless her. I feel your pain. We've tried it all over the years too and been met with so much resistance. Do try the air up bottle though. I thought they were nothing but a hyped up fad which of course they are but they seem to help water intake for ND kids especially. Good luck OP and if you ever need to chat feel free to message.

I think docusate is the same as dulcoease, but would depend if GP would prescribe it under 12. Perhaps they might have a child version?

I have a high functioning DD and while her diet is awesome she won't drink unless it's something really sweet. Yesterday she had chest pain she was so dehydrated. I was so scared! They say using a straw helps but nothing helps except making her water sweet. I use the healthiest water flavor packets they make but even then it's so hard for her.

Has she ever tried frozen blended banana? It's just like ice cream and you can add vanilla or other frozen stuff if she'll tolerate it. Sorry you are dealing with this, I understand totally and I hope someone's ideas helps your darling.

@flowerchild2000 doesn’t like banana either 😅 thank you all for your advice though I’ll try a air up bottle and more regular toilet sits. I’ll try a GP appointment and ask about Ducosate , not that they’ve been very helpful before.

I believe you but frozen banana blended up doesn't taste like banana! But yours sounds like she has a superpower for tasting anything! lol! You could try it and if she doesn't like it you might, it's honestly so yummy. Hope she gets some relief soon 💜💐

I can’t add much to what has been said but just wanted to give solidarity, as bowel problems are really tricky to handle especially with the added embarrassment factor. Then other parents just love to tell you that their DC potty trained themselves in one day at the age of two…🙄

Do hot drinks make any difference?
Porridge, apples? I remember reading about soluble fibre.

There is a small height adjustable folding table advertised online called the ‘Adjustable’. Thankfully we eventually managed to solve our problem (it was psychological and DC eventually did it in their own sweet time! 😁) but I did look at that table and think: ‘That could have been useful for distraction activities while sitting on the toilet.’ It is about £20 I think.

Also the ERIC website, if you haven’t seen it already.

We used to have a little table so he had something to do while sitting.

Do you have a referral to a paed gastro? I'd be pushing for this if I were you. Your daughter sounds like she needs more than the support from the bowel nurse. I never found general paeds to be useful, once we finally saw a gastro, we started getting answers and some practical support. Mine ended up with an ACE/Malone stoma which was fantastic. He's now got an ileostomy which has made his life a lot easier to manage.

We did the timed sitting, the osmolax/movicol, low fibre diet, dietary restrictions and still needed surgical intervention.

Have any of the medical staff suggested she tries anusol? It contains a local anaesthetic, and can make passing a stool less painful.

I don’t really have any advice but just wanted to sympathise as my daughter was the same and it was such a nightmare that nobody really understood. We gave her movicol in yoghurt, she could still taste it though. I’d focus on finding literally anything that she would like despite it containing movicol.

I'm not sure if a colonic would be a suitable solution for a young child but I've had severe constipation all my life and would only go every 4-5 days no matter how much water I drank or fibre, fruit etc I took in. In the spring it got so bad I thought I had an impacted colon and was going to need to go to A&E because I'd not pooped for 7 days! I was so uncomfortable. In a moment of desperation I booked a colonic with a very trained specialist who massaged my bowels and loosened everything up and got rid of the backlog.

I'm not joking when I say that it was life changing! I have pooped almost every single day since May!!! I've never been regular in my life, and now every morning I look forward to a poo. It really is something most people take for granted, but I'm still excited and amazed each morning and feel so much better now. The only times I've not managed to go has been on hectic mornings when travelling or in a massive rush and have been out of routine.

I'm also ND and think I wasn't reading my bodies own signals my whole life and was always tense and anxious which caused a massive backup.

My daughter has autism & PDA and suffers with constipation at times.
A daily Actimel drink has resolved this problem. I bought several different flavours for her to choose her favourite. It's easy for her to drink as it's a small quantity (it's one of those mini plastic milk bottles).
It's supposed to regulate the gut & it has really worked for her.
Would your daughter tolerate a cup of prune juice a day to try to clear the constipation & then you could use the Actimel as maintenance.

Good luck.

I just remembered taking fiber gummies when I was pregnant. They are like gummy candy, there's no texture or anything weird about them at all.

Hmm my comment was hidden for some reason so apologies if this is a repeat, but I just remembered I took fiber gummies when I was pregnant recently. They were exactly like regular gummy candy, nothing to tip your DD off they are more than that.