6 and 1/2 year old constantly soiling and movicol not working

[Clazb]

Sorry this is a long winded story! I'm new here!

My son has been having bowel issues since we potty trained him at nearly 3, on nurserys advice we took him to the gp to be told it was toddler diahorrea and put on Movical 4 sachets a day, after a year and a half reducing and increasing the dose they finally referred him to see a consultant Nov 2017, to which the consultant refused and rereffered to the incontinence team. Finally this year October he got seen by the incontinence nurse to be told there's nothing more they can advise apart from see a consultant who has again refused to see my son. So for the last 3 years we do a disimpaction dose at least twice a month along with his maintenance dose, my gp is no help every time we take him to be seen we get fobbed off with keep taking the movicol. My son constantly soils himself at home and at school, he has to self care at school due to the fact it's a tiny school and not enough staff and I go to the school every lunchtime to check him too. Has anyone had similar experiences? We are worried the longer it goes on the more long term damage it could cause. Also been advised to apply for dla but not sure the ins and outs about whether we would be entitled? Any advise would be great!

[SallyandPaul]

Hi there. Does your son have senokot with the movicol? This gives more of an urgency feeling that they need to go to the toilet. You can buy it in liquid form over the counter. He could probably have 5ml. We have also used glycerin suppositories recently. Our daughter has had this problem for six years and was referred to a consultant because of UTIs. She has had to have an X-ray after taking capsules for them to be able to do a colonic tracking. This meant that she became completely bunged up and has also meant she has had loads of wee accidents too, which at nearly ten years old is no fun. I'm just saying all this because the suppositories have really helped and things are slowly getting better .

[Mazleech73 in reply to SallyandPaul]

Good afternoon I was just reading your post. Can I ask where you buy the suppositories from as my son who's 11 has suffered with the same problem for nearly 3 years now he's on movicol 6 a day but I seem to be going around in circles. He had a wk in hospital for as his colon was backed up with poo. Followed by 6 sachets a day on returning home but he seems to not get a normal type 4 poo the incontinence nurse wants he is having a type 6 all the time and accidents every day again I don't know what to do. I am hoping a suppositry would help. Kind regards.

M.Leech

[SallyandPaul]

Ps sorry she became bunged up because she couldn't have any laxatives for a week with disastrous results!!

[Clazb]

After reading the nice guidelines on this I think we are going to have to give him something else along side the movicol even though the doctors are convinced movicol should work on its own

[SallyandPaul]

I would definitely go for it. Good luck!

[Robinia]

Have you ever done a full proper week of disimpaction and got to brown water? Have you watched the poo nurses video? I agree re:Senna. I would also push to see a different consultant. Don’t be fobbed off. We’ve all been there 🙄

[Katyjustdoit]

I agree senna and movicol and a routine of sitting on the toilet for 10 minutes after meal times. This has helped regulate my daughters bowle. (5.5 years old)

We were having uncontrollable soiling every day, also loss of bladder control.

6 months on we feel in control of the soiling and hoping the bladder will follow.

Were not 100% there but we are100% better than we were, still have bad days but it not every day.

Push for a consult appointment, poo nurse video was a big turning point too. GP don’t have the time or understand, also until you live with it or see it first hand no one understands how hard it is on both the child and the rest of the family.

Good luck.

[Ninjago in reply to Katyjustdoit]

It is so hard. Specially for the kids. We suffer together and sometimes I don’t know how to help or improve my son wellbeing.

[Clazb]

We do full disimpaction routine at least twice a month because of how often he impacts himself. We have letters from the school about how it's affecting his attendance and socialization which the doctor and hospital has copies of. Yet still the consultant refused him. We are going to start on senna today will keep you all updated. Thankyou!

[OlivesYou in reply to Clazb]

How is it going with your son? I wanted to add that we were on the same roller coaster with movicol until we added senna! It has made him poo almost everyday. Very difficult road, he had to see an occupational therapist to learn how to swallow pills , he doesn’t like chocolate senna and now he takes up to 25 mg senna per day. As per doctor advise

My son still is afraid to sit on the toilet. Working on how to get him to sit and have a poo

[Frustratedmum1]

Hi ya. We can all sympathise what you are going through. My son is the same age. We have to go into school every day also. First of all a toilet routine has been a god send for us. So sit him on the toilet 20 to 30 mins after every meal and sit him there for at least 10 mins. Can be a pain but it does pay of but takes alot of time and persistence. Bought a ladder to go on the toilet at school.

Fluid intake is another important one which my son is not the best at. We now put 500ml into three bottles. He has the first in the morning. Second after dinner and then the third after school. We have now got school on side.

When you do a discompaction programme is your maintenance dose approximately half the dose when your child discompacts on (ie if he discompacts at 10 sachets I would look to set the maintenance dose at 5) My son's maintenance dose has been as high as 8. Please don't take this the wrong way but I made the mistake I didn't used to mix the movicol up right. Mix in water first before adding squash. When we introduced a stimulant I.e senna that improved things.

Have you considered food. Is there a food group that is aggrevating him?

At the end of the day you are entitled to a second opinion. You have to fight for it. The person we found helpful was the school nurse. She identified the problem and pointed me in the right direction. Nothing seems easy in this journey but keep going and keep pestering.

Another thing we are using a chiropractor now and I think that has made a difference. We are coming to realise you have to come at this problem from a variety of angles.

Sorry this is along reply. Hope there are a few ideas for you.

[h3ff3r in reply to Frustratedmum1]

Hello, im interested in your use of Chiropracter, my Granddaughter is 7 and she has been soiling since potty training, she is on movicol but it seems to make it worse, we are going to see a homeopath next month but I am also interested in any other alternative therapies, what does your Chiropracter do ?

[Frustratedmum1 in reply to h3ff3r]

To be honest when I went down this route in had hit desperation and my son's dose of movicol and Piculate were increasing.

She basically looks at him and works from his head down the spine and find points where the nerves are getting trapped and tries to release them. My son's issues with the nervous system were bowel/ liver related/ around his.pelfor etc. We have been going once a week since middle of September and now we have progressed to fortnightly.

The one thing i found odd was when we first started treatment he had to go to the toilet and alot of poo seemed to move a few days after.

From my personal experience I have come to realise you have to come at this problem from a number of directions to try and resolve it.

I wish you all the best and I would say it's worth a try. Try and get a recommendation as I feel this is key.

[Frustratedmum1 in reply to h3ff3r]

The other thing I would say is sometimes you feel movicol makes it worse. But i found my son was more impacted than we initialy thought. Perhaps the use of a stimulant may be benefical

[h3ff3r in reply to Frustratedmum1]

Thanks for your reply , what do you mean by a stimulant ?

[Frustratedmum1 in reply to h3ff3r]

Basically a stimulant makes the colon contract so it helps move the poo. So we use Picosulfate. I think senna does something similar.

[14crosstitch14]

Have you tried any fibre type foods? Soreen and all bran with lots of fruit or apple/orange juice. Dulcalax. Helped my daughter. Senacot can help. Toilet routine before /after meals. 1st thing in the morning toilet drink breakfast, a good routine helps.