6 year old with chronic constipation

[Charlifarli69]

Hello all,

It’s my first time posting and I’m looking for advice and support!

My 6 year old daughter has struggled with bowel issue since she was about 2. Never being very regular and struggling to pass.

She has a very balanced diet, though probably doesn’t drink enough - despite encouragement.

She started going only once a week - sometimes once every 10 days. This was her ‘normal’ - we didn’t have soiling and despite t being a huge movement she never said it hurt. We tried lactulose, it did nothing. We tried movicol before. Nothing.

2.5 months ago she went 10 days without going and I knew things weren’t right.

She started complaining of stomach pains and feeling nauseated. We saw an out of hours GP who prescribed Movicol, 4 sachets a day. It was 2.5 days before we started to see movement. Then she was pretty much incontinent for a week. We were told when she was clear, to reduce the dosage to once a day, then further still if needed, to find the balance.

Well we have struggled to find the balance! Last week she was sick and complaining of tummy ache ao back to the disc we go. They prescribe PicoLax as well as the movicol.

Now I have a child who can’t stop spoiling again.

My concerns are three fold:

- she’s 6, she’s missing school and it’s so horrible for her to cope with.

- her inability to feel if she needs to go or has been.

- when all this will end!!?

I’m at my wits end - it’s socially isolating for us as she can’t wear pull ups to school or put woth friends but she can’t wear spiked pants either!

I just don’t know what to do!? They have finally referred us the hospital but I don’t know how long we will wait for an appointment!

A very sad Mumma 😔

[kellylill]

Hi there

Sorry I don’t have much help but I’m in a similar situation with my daughter.

She had always had bowel and wetting problems. She’s 7 now and we did a disimpaction with the movicol last week so she ended up having the whole week off school because she was soiling her pants every day.

Did you use the movicol and keep upping the dosage until her stools were like water? Then I was told to reduce it gradually like half a sachet each day. We did the clear out and now I’ve reduced it down to one a day but she’s still been soiling herself. I watched a video link I found on here this morning from the poo nurses I think they’re called and it was very helpful. After watching he video I began to think maybe I’d not gone far enough with the clear out and that’s why she’s still leaking stools but then she goes and does a “normal” poo on the toilet today 🤦‍♀️

Sorry not much help to offer but try to watch the video to get a better understanding.

[Charlifarli69 in reply to kellylill]

Awe thanks for replying. I probably didn’t go far enough either with it but I just dont get how she can go straight back to being so constipated and impacted?

And at what point do we say enough is enough? Schooling, social growth and confidence is affected and it’s just soul destroying for her!

I know I’m not the only one in this boat - it’s really getting us all down 😔

[kellylill in reply to Charlifarli69]

I know it’s hard.

I don’t feel like I get much help from the gp either as they don’t seem to know enough about it. That’s why I’ve just joined this forum. I’m going to up the dosage again now though and keep bothering the gp until we get sorted this time.

[Jo31]

Hi this sounds exactly like what we went through, stressful I know! Past from doctor to doctor medicine to medicine for 4 years. It turned out that my daughter had a stretched Bowell because of the constipation where all the waste would collect, eventually she was given an op to flush it all out followed by an enema, luckily as she was young enough her bowell springs back to normal, we also discovered bt paying privately before this that she was dairy and soya intolerant. She now has 7.5ml of picosulphate each night and have had daily normal movements and all’s good. My advise would be don’t let the doctors just prescribe the meds push and PUSH for investigation as to why she is constipated.

[Frustratedmum1]

Hi ya. We were in your position last year.

What you find it if they are unblocked the soiling will become less the sensation will come back but this takes a very long time. I was expecting it to sort itself out in weeks not months.

If she is complaining of stomach ache and struggling with sensation I would think there is still a quantity of poo there.

Try and find your child's signs when they are blocking up. My son appetite would disappear.but i came to realise once this happened he was very blocked. I use temperament as a sign. Ie little things become a very big deal.

Don't rush in reducing the movicol I have done that and I have then ended up on a higher dose. It has taken me a long time to realise you can't sort this out in weeks it can take months and longer.

Watch the poo nurse video as it explains quite alot of things.

Sometimes you think they have got diarrhoea but it is actually overflow. Which led us to reduce the meds instead of increase.

In reference to GPS you need to keep pestering especially if you think things are deteriorating.

My son is 6 and we have had to put him in pull ups so he can go to school. Why cant you use pull ups? They helped us get our freedom and just get out the house to play. What I have found, be open with the school. As you will probably educate them. I found our school nurse very helpful.

The point you are at the moment seems hopeless but hang in there. You will have good days and some very bad ones.

[Jellylorum]

I'm so sorry to hear that you're going through this. We've actually been in a very similar situation with my son. It sounds to me as though your daughter was (and is) impacted, but unless I've misunderstood your post the dose of Movicol you were given wasn't a disimpaction dose. My guess is that it was enough to get things moving, but the Movicol simply changed the consistency of the new poo moving through the bowel to liquid and did nothing to actually get rid of the impaction. This would explain why you were no better off once you reduced the dose and why your daughter is still experiencing what sounds like overflow diarrhoea, with no ability to feel when she needs to go or has been.

The disimpaction regime basically involves giving escalating doses of Movicol until the poo takes the form of brown water - there's a useful guide on the ERIC website: eric.org.uk/pdf-a-parents-g....

If your daughter hasn't been properly disimpacted then that needs to be the first step, as until she's properly clean nothing else is going to work. Once you're absolutely sure she's clear you need to continue with the Movicol to help your daughter stay clear whilst the bowel shrinks back to its normal size. We were told that the maintenance Movicol dose should be half the disimpaction dose initially, even if it makes things a little loose, but I know others have been given different advice. The most common problem is not giving enough Movicol and ending up back at square one (with an impaction problem again), which is more likely to happen when the bowel is stretched.

I hope your appointment at the hospital comes through quickly. In the meantime could you find out who the SENCO (Special Educational Needs Co-ordinator) person is at your daughter's school and have a word with them about what's happening? They might be able to help put a plan in place for your daughter at school to help her to cope and ensure she doesn't miss too much work.

[BecJ]

My son is now 9 & is under the continence nurse at Leicester Royal who is fab. He takes one movicol a day & then a varying dose of Sodium picasulfate. I control the dose depending on when he last went.

We did get prescribed picolax for clearing out & it was horrific. We had to use it alternate weekends for a while.

Movicol on its own doesn't make him go, it is a softener so stops it being hard when he does go. The sodium picasulfate is a stimulant which is what makes him feel the need to go. We also tried some senna product at some point (worked for a couple of weeks then no effect at all).

From my experience it's about getting your head round how stretched they are from not going & it stops them getting the sensation of needing to go. We were advised that with the sodium picasulfate & movicol combo he also sits for 10 mins on the toilet each day with his feet on a 9 inch squatty potty step as it puts him in a good position (higher than toddler step stools). We are basically training his body (& head) that after dinner/before bed is a good time to go (we tried mornings but it wasn't his natural cycle).

There is hope (I promise), we no longer have the soiling in school (minimal at home too) & he is now in a regular cycle of going. Fingers crossed the hospital appointment won't be too long. Until then maybe request a stimulant laxative from GP to go alongside movicol?

[Charlifarli69]

Hello all, thank you for all your posts.

The GP we saw had been in touch regularly and she phoned yesterday to say she had been speaking with a consultant and they asked us to go to the Paediatric Assessment Unit for review.

We went up there yesterday evening and were prescribed Senna and to continue 4 sachets of Movicol a day.

She had 10ml senna last night and has had 4 sachets since last night and we have nothing. Not even any soiling today.

I just don’t know what to do!! I think he said to increase the Senna to 15ml tonight if no movement and see what happens.

Her stomach is so distended and painful - why won’t they just do something!!?

[halftime]

Hi. You already have some great comments and suggestions from others; jo31, Jellylorum and Frustratedmum1 especially. My son only developed a proper, (generally reliably)good, bowel habit after we were eventually prescribed senna into the mix, with a view to moving off the Movicol completely, senna only to get some sense of impetus to go, reduced senna and finally careful monitoring with nothing. He now goes twice a day, every day. We monitor carefully and take senna immediately there is any sign of dropping below this twice a day rate. This may seem a little obsessive, but his bowel and bladder were very stretched and the only way to 'normalise' both was to keep his bowel as empty as possible. It does take ages (but not as long as us I feel!)

When he was about 9 I had asked whether all the constipation would have stretched his bowel because I felt he didn't experience normal sensation for the bowel or bladder. (He had been having Movicol alone for a year or so and was apparently doing beautifully - smooth no.4's every day.) I was told he was doing fine now and it would all ping back to normal and highly unlikely he was not experiencing normal sensation.

The bed-wetting continued, unimproved. Skid marks you could scrape were still a big feature even though he wasn't apparently constipated. About a year ago (he is 14 now) we discovered his bladder capacity was significantly greater than expected and, even after double voiding, he was retaining 25% after being sure he had an empty bladder. We were told his bladder and bowel were very stretched. We got little in the way of sensible advice which was when I started looking on this forum. We picked a half term for aggressive dis-impaction (something we had never been advised to do, ever), and repeated the movicol/senna combo and controlled reduction again. I also sought a referral from the GP to the Evelina Hospital when we had the stretched bladder and bowel news (and no sensible suggestions!). 6 months later he was tested again at Evelina (having not had skidmarks you could scrape since that dis-impaction) and bladder capacity was normal and retention after he had double voided and believed he had fully empty bladder down to 10% or less. Massive improvement. Him and I were chuffed.

My advice...Push hard for help. Keep detailed notes/diary of how child is. Water is important; we tried filling bottles which had to be got through by certain times of day - it did work to reinforce good habits in a kid-easy way. We wished we had had more proactive advice when he was 6. Dis-impaction is important. If hearing nothing from UCL ask for GP to refer to Evelina or re-refer to UCL; you can get lost, believe me. Don't worry about asking for too much help. Effectively, you start making a 'noise'. Sorry this is longer than I meant. Good luck.