5yo and chronic constipation

[TheColdDoesBotherMeAnyway]

Hello
My 5yo dd2 has suffered with chronic constipation since she was 2. She was started on movicol at that time, initially 1 sachet daily which we stopped after a few months as it seemed to ease. Around a year later her symptoms returned - mainly soiling. Steadily over the last few years we have gone from a sachet every other day to 5 a day. We have a good few weeks on a dose and then the soiling starts again so I have to go up. We have never been advised to follow a disimpaction routine. We have never been referred anywhere by the GP, every time I take her I just get told to up the dose. She has been seen in eneuresis clinic by a nurse due to bedwetting - she has never had a dry night, but understandably the nurse wants to get the constipation under control before tackling the night wetting. Dd1 never had constipation but did require desmopressin for bed wetting so it may be as much a familial thing as due to the bowel problem. The bedwetting is much less of a concern than the soiling though.
Tonight she has sat on the toilet crying in pain and frustration and I have just had enough. At what point can I say to the GP that the movicol clearly isn’t enough? How many sachets does she need to be on? She has never had any investigations or even a full examination. It’s also not easy getting 5 sachets into a child who is at school all day! The school are supportive and will clean her if required but she doesn’t have any kind of healthcare plan, and she often comes out with small stains in her knickers because no one has noticed. Should I be pushing for a written plan, and if so how? Do I approach the school nurse or headteacher?
Sorry it’s long and thanks for reading

Oh you poor things, that sounds awful. Five sachets every day long term sounds a lot to me, but I don't have much knowledge. Can you see a different GP? If not, I would have a chat to her teacher and ask if you can see the school nurse. In fact,given waiting times, I would try and do both to get different opinions. I have found gp s good at treating constipation but pretty useless at looking at the reasons for it and preventing it.

Thanks for replying. Yes I think I will contact the school nurse, although I know they are extremely busy so not sure how much she will be able to do. I asked for Senna before and the GP said it causes cramps but I feel like we need to try something other than movicol. The NICE guidelines suggest up to 4 sachets and we are over that.

I think the best thing to do is go back to the gp and ask to be refered to paediatrics. They're obviously not able to manage it and the longer it goes on the harder it can be to get on top of. Is she crying on the toilet becausr the poo is hard and sore to pass? In which case i'd ask the gp to prescribrle lactulose which would help soften the poo and can be usel along with the movicol.

It may be paeds dont rush to do any investigations as theres not always a lot of tests that need done but they should be able to help manage it and give you a proper treatment plan. In my area the school nurses wouldn't have anything to do with this kind of thing but its worth a try getting in touch with them. In the mean time encourage her to drink as much as you can get into her to help keep things soft akd have a look on the ERIC website (you might already have been there!) as it has loads of good info and support. Hope you get things sorted soon op.

Oh, also saw you were struggling to get the 5 sachets in as she was at school all day. Remember each sachet only has to go in 60mls of fluid so a tall glass of juice can normally take 3 sachets. Dont know if thats any help sorry but just incase!

Have you read the ERIC website?
Also google the poo nurses and watch their video presentation.
Once you have done that you need to go back to your gp and ask for a referral.
Good luck.

Dd1 has also had chronic constipation since potty training and is now 7. Senna has made a huge difference for her. Now on one movicol and 5ml senna a day. Insist on consultant referral. Presume she has had allergies etc ruled out?

Thanks all
I have tried 3 sachets in one drink and although she drank all of it she said it tasted ‘weird’, I’m obviously reluctant to do anything that stops her taking it - she is brilliant to be fair! She has 2 with breakfast, one at lunch/after school if not at home and 2 with dinner at the moment. She has had 8 yesterday and 8 today as last night was so traumatic - it was hurting her at the crowning moment . She’s had a really good clear out today so I’ll go back down to 5 tomorrow as it’s now watery.
I’ve referred to the Eric website, and printed out an example health plan for school. I have also emailed the headteacher to ask for a meeting and the school nurse today to see what she suggests. I have also made an appointment with a GP who we have seen before for the week after next.
Allergies have not been ruled out, she hasn’t had any investigations at all.
Thanks again

You have to continue with the movicol maintenance programme for at least twice as long as the constipation has existed.
So you are looking at years of management.
This is so, so important.
If you stop too soon you will go right back to square one.

I don’t intend to stop - I just don’t think the constant advice to just up the dose is helpful in the long term - at the rate I’m increasing it at the moment she’ll be on 10 a day before Christmas. I think it’s time to try something else alongside what I’m doing now.

My ds has chronic bowel issues. If he needs large doses of movicol (we have had up to 12 a day) they have also mixed it into drinks at school (the school nurse drew up a care plan and we signed medication forms). He has movicol and Pico sulphate as he didn't get on with Senna, but tbh we are in a never ending cycle of
blockage> no poo> clear out> try to find maintenance dose > blockage ad infinitum.

Can I ask does your DD take any other supplements at all (eg iron/multivit etc) and what her everyday meals are like?

Yes you probably need a stimulant laxative as well.
It does become all consuming but it is miserable for everyone. You will get there though. It is a case of making tiny changes until you get it right.

She takes vitamins when I remember 😳, but no iron. She eats well - she tends to like familiar foods rather than trying new things but she eats fruit and veg. She drinks well (better than dd1 who is an awful drinker!) and we don’t eat a lot of processed food. I think I can trace this all back to a really hard poo when she was about 2 and at nursery

That is an absolutely classic history.
Pain causing witholding, impaction and overflow.
The bowel gets stretched and damaged. The signal to poo no longer works and it takes years to retrain. But it can be done.

Totally feel for you I have a 6 year old with a similar history and we got dulcolax added in last peads appointment (only got as he’s been in hospital with his asthma so they helped with this too)

Once he went back to school in August he was daytime wetting and I was really stressed as School were quite pushy (rightly) about getting it sorted as was 3x per day. ERIC website is really good and helpful and I hadn’t any idea that daytime wetting was linked to constipation.

We managed in the October holidays to clear him out enough to stop the wetting, and he now has 10ml of dulcolax and 2 sachets per day along with any fluid he will take them in so usually a smoothie then a large glass of juice and plenty fluid but we try to give after school to prevent poo overflow at school and his tummy is much softer, also giving a nice warm bath every second night - every night was getting him upset and he’d often jump out to go or sit on afterwards. It’s veen a long road to get here but def seeing improvement.
Hope you get something else added in, did help my son, our continence nurses have 9 mth wait list so def look at Eric and try and be consistent and encourage movicol and plenty fluid/ warm baths until you get somewhere it’s frustrating I know x

Thank you for sharing your experience. Yes to the wetting - and I don’t know if it’s linked but when she goes swimming she gets out several times for the toilet and then needs to go several times for the next few hours

My DD was and is the same. Have you identified any foods that make the constipation worse? If not it can be helpful to keep a food diary.

In our case, carbs were the culprit so we went gluten free for a month and the difference in my DD's appetite, movements and mood was incredible. We're currently back to eating gluten so that coeliac testing can be completed. Good luck!

We have had a similar issue with my DD for a number of years now. She has hypermobility and chronic constipation is a common side effect. Our GP referred us to our local hospital and from there to a specialist unit at a London hospital where we go a few times a year. Following an ultrasound she was diagnosed with megarectum where the bowel is very stretched.

We found the large daily doses of Movicol to be unmanageable when she started school as it's difficult to get the dosage right and of course we wanted to avoid diarrhoea in front of her classmates. Eventually we were prescribed micralax which is an enema administered daily causing the bowels to contract. It works well but even with that it will take a long time for her body to recover.

My advice would be not to be fobbed off by your gp.

My dd was the same and it turned out to be lactose intolerance. It can manifest as Constipation. We had literally years and years of movicol, bedwetting etc and no on ever suggested eliminating anything from the diet.it was very easy to tell that it had worked.