My 7 year old son has been soiling his self at school and at home for years and is still wet at night. I have asked dr’s about it to be told it’s normal. The school have put a referral in to the contence team for them to kick it back and they have also done a referral for ASD that has been accepted. After hassling the dr’s all week to get him a appointment we finally saw a dr on Friday who said that the left hand side of his bowel is blocked and put him on lactalose twice a day, I also told the dr that my son has told me he doesn’t know he has been until I tell him and even then he doesn’t believe me and tells me I’m lying. The dr also put another referral in for the contence team. On Friday after his first dose he had 2 little accidents but has done nothing since is this normal?
New and need help. Sorry for long post : My 7 year old... - ERIC
New and need help. Sorry for long post
Dear Zubbs,you need so much help here, bless the pair of you. Ring Eric they'll give good advice. Also watch the pooh nurses video, theres usually a link on here. we have an adopted daughter whos had this for ten years. things have improved with disimpactions.colonic irrigations,maturityetc. we are waiting for an autism assessment so a lot of hers has been sensory. they just dont feel it.the wetting is often caused by the constipation too,bowel pressing on the bladder.it can be a long,messy,frustrating road but there is help out there. Do hope you get it. Good luck.Sally
Thank you so much for your reply Sally, I’m glad things are improving with your daughter and hopefully you get the assessment soon. The new senco teacher at his school has been so helpful she was the one who told me to hassle the dr this week about him soiling his self because she thought he could be constipated and the moment I said to her I think he may be on the autism spectrum she observed him and agreed where as the other senco just dismissed it so it has been a long road to where we are now. Was your daughter prescribed lactose and did it work?
I’m thinking of ringing the dr again tomorrow and telling him that nothing has happened so far with it. I will most definitely watch the video and ring the helpline, I’m hoping that the dr’s referral to the contence team goes thru this time. Im also a bit confused that the dr said that the left hand side was blocked but not the right.
I think thats just the way that the pooh moves round the bowel,water is removed and it gets more bunged up as it gets towards the exit. The bowel itself becomes enlarged and floppy and takes years to get back to normal, hence lack of sensation. She has always ad movicol or cosmicol plus senokot sometimes. we,ve also used childrens suppositories when desperate!!You can get those in the chemist,very explosive. Sounds like he needs a disimpaction which you should probably ask thy gp about,we use movicol for that.So pleased you have a good senco,thats half the battle.Sadly this has been a long battle for us and has required a LOT of patience which has sometimes run out. Were only human though and it is such an anti social issue. let me know how you both get on Sending you both a huge hug
Thank you Sally, you managed to tell me a lot more than the dr did. I am definitely going to ring them back tomorrow and ask about disimpaction for him. It most definitely it, I’ve being telling them my concerns since he was at nursery so has taken me 4 years to get this far.
I know I’m asking alot of questions and I’m sorry but does your daughter tell you if she is in pain? My son suffers with recurring tonsillitis but never tells me his throat is hurting or if he has a headache or belly ache etc which is one of the reasons I never thought he was constipated.
Hi lovely, shes never complained about tummy ache but anything else she certainly complains about!!Maybe they think that bunged up feeling is normal .
Afternoon Sally, I wish my son did but he don’t (he fell off his bike during lockdown and cut himself down below and never told me -it wasn’t till I saw the blood that I knew anything was wrong!) I hope not I would hate to think he has been in pain all this time and not told me.
This is definitely constipation/impactation and it sounds like you need to shift the blockage! It’s going to be a bit of a long journey but it sounds like you have already been through so much! Look up ‘disimpactation’ on the Eric website. There is a wonderful guide and definitely give them a call.
This is what I would do (and have done with my son many times over the years) - do a proper disimpactation. It takes 5-7 days until you get to the watery stools. Use movicol - you can’t do this with just lactulose. You may need to add a stimulant like senna to get things going. There will be a lot of poo and lots more accidents. I do this in the holidays / over a weekend and have kept my son off school if necessary. When you move to a maintainanace dose - 2/3 sachets of movicol a day - implement a toileting regime - 20 mins before school with an iPad or something and feet on a stool. Then lots of naked time at home with a potty near by and almost ‘retrain’ him to recognise the feeling of needed to poo. This takes weeks - often months to get the feeling back but it will come! Keep having patience and almost ignore the accidents, they really can’t feel an accident. Blame the ‘naughty poo’ and not the child really helped us. We have been on a maintainance dose for 2 years (my son if 5 now) and it’s taken a lot of patience with the GP to get them on board that we need repeat prescriptions for a long time.
Finally a read this book (attached). I even took it to the DRs with me to explain my point. It really helped me get control of the situation! We are not at a point where we get no accidents but as soon as the accidents start (wee or poo) we up the movicol and it seems to get us back on track. The movicol does no harm! It just draws water to the stools so it can be used for years. I can’t see us coming off it any time soon.
Best of luck! It will get better, you can get control using the movicol, I promise. It just takes a lot of time and patience.
Other tips worth knowing… they can still poo regularly even if constipated, it’s the leaking around the blockage. we mix the movicol with milk which works for us but you can use juice, and diet alone won’t solve this problem - we have tried! Movicol is the key xx
Afternoon and thank you for your reply and advice.
After the advice yesterday and reading about it on the website I am currently waiting for the doctor who prescribed my son the lactulose to call and I am going to tell him that I want to do a disimpaction so hopefully he will listen and agree and not just tell me to wait for the referral to continence team. If he doesn’t agree I will go to the chemist and see if I can get anything over the counter to do it.
I most definitely don’t like the fact that he could be in pain with it and he doesn’t tell me if he is in pain (I’m not sure if it is because of his suspected autism or because he is a bit scared that he may end up in hospital again- he was in and out as a baby/toddler due to having a floppy windpipe).
His school are being very supportive so I know if I have to keep him off for it they will not cause a issue and I know they will help me all they can.
We already do toilet time with his I pad and we have tried blowing bubbles to relax him so he goes but that hasn’t worked but have never tried a stool under his feet ( I will now be kicking his dad’s plastering stool to try 😊)
He is normally just running around in his underwear indoors and we have 2 toilets but I will get him a potty as well and hopefully he will sit on it.
I do tend to ignore the accidents because he has told me he can’t feel that he is going and I’ve never wanted to tell him off for something he can’t control because it doesn’t seem fair and I don’t want him to start withholding.
He has been having accidents at least 3 times a week and on them days he can have up to 5 accidents a day and I’m sure he is getting embarrassed about it now because of his age.
I am definitely going to push for movicol from the dr today, I need to get this sorted for him and will try it in juice for him so he won’t know that he is having it. Xx
It sounds like you are doing amazingly well at coping with this without the support from a DR who has experience with this issue. If you don’t get agreement to do a disimpactation, maybe change drs?! Best of luck x
We are going through the same, my son is now 6 and won't sit on the toilet and soils himself up to 5 times a day including at school, time to get rhe potty back out as out GP is useless and not given us any advice just to keep giving movical, hang in there
Hi Nicky, it is a pain when the gp don’t help, when I asked the dr about doing a disimpaction of my 7 year on Monday he told me no because he doesn’t feel he is impacted as my son didn’t tell him it hurt when he felt his tummy (my son doesn’t say when he is in pain) then proceeded to tell me that children do not mask pain!
I had to ask him for a abdominal x Ray which he finally agreed to and did give me movicol but only 2 sachets a day. I wasn’t happy with his attitude or treatment so I took my son to A&E and unfortunately because my son is eating and drinking fine they sent me to the emergency dr’s and the gp we saw there was much more helpful, he advised to try prune juice but only 1/4 of a glass a day but make sure it really chilled, upped the movicol to 4 a day, prescribed sodium picosulfate and wrote to my gp to refer him to paediatrics -my gp did that but that was a fight as well they tried to tell me it was because of the antibiotics my son had in March!.
I have been doing toilet time for a while with him half hour after he has eaten I make him set a timer in his I pad for 10 mins and he goes and sits in the toilet and watches you tube since his been on movicol he has actually been on the toilet - I think he enjoys the peace and quite personally.
After being told for years from the gp it’s normal and thought I was making a deal out of nothing I’m glad I found this site and all the helpful information from people has given me the confidence to push it all further but feel bad because I never realised he was constipated.
Do you have more than 1 gp so that you can get a second opinion?
This is awful that you aren’t being believed! I am so sorry but you need to do a full disimpaction and 4 sachets a day will not work and could possibly make it worse.
Have you tried the LIVI app? I spoke to them when I was going through my first impactions and they gave me Laxido straight away. It was in covid restrictions though.
His age he’s going to need to go up to 12 a day for quite a bit so you’re going to need a repeat prescription.
Also you can buy Laxido over the counter from a lot of pharmacies- though our local Boots says you can’t but I’ve done it before!
Good morning, I have another dr appointment today with a different dr at the practice to see if they will do the prescription for him. I’m also hoping his x Ray has come back so they will be able to see how blocked up he is. I have also wrote a letter of complaint to the surgery manager about the lack of support my son has received from the first dr who diagnosed his constipation.
We had a similar situation, and after waiting weeks and months for a face to face and then follow up we here left with more questions than answers. It was not only the doctor that was disappointing the whole experience with this surgery went downhill argumentative and clueless front desk staff as well, so we chose to move to another surgery and so glad we did.
Hi, sorry if I’m a bit late but I’d second the recommendation to call Eric. A lot of doctors know they are the experts and so will just follow and prescribe whatever Eric have suggested (which is very likely to be Movicol or similar). Good luck!
Good morning Littlebears and thank you for your reply, when I told my gp that I had looked on the Eric website and presented him with the disimpaction information that I had printed off he looked at me like I’m mad and then told me that is no longer recommended to do disimpaction, even tho I showed him evidence of what my son is doing in a poo diary (again printed from Eric)He has given me movicol but only after I asked for it and only a maintenance dose.(another dr said I could up it to 4 instead of 2).
I have had my sons referral for paediatrics but they no appointments at the moment (typical). Hopefully they will have my sons abdominal x ray results this week so I’m keeping my fingers crossed they do something when they see that, if they are still dragging their heels after the x Ray then one of the mums at the school had movicol on repeat prescription and she is happy to order a load so I can do a disimpaction during the school holidays (I know we shouldn’t do it that way but if that is the way I can get him cleared then I will do it) and I’m still waiting for the referral from the continence referral to come thru.
I’m so sorry to hear this Zubbs, the eric helpline advised me most gp’s follow their advice and I was obviously just lucky mine were aware of them and did. I’d definitely still call the helpline though as they will give you personal advice as every situation & child is different. Good luck with everything.
Hi all, I'm a little late responding too and so sorry to hear your family's challenges Zubbs. I read your story and it could literally be my own! Same thing, 7yr old boy, chronic constipation since he was 2. Accidents all the time Have had two referrals from GP and School rejected to check if for ASD. The Senco at school really great but she feels he only shows 1 out of 4 identifiers for ASD. My son is and always has been a selective eater so I'm going back to the child psychologist to try and get him on an eating programme. We manage his constipation now with Lactulouse or Senna.
It's exhausting and occasionally I put him in a pull-up to go to school. School are supportive but I don't want just want to learn to live with this and be reactive, I want investigation and to help with his food disorder It just feels like there's so little support but so grateful to know its not just us!
Hi Tatty74, thank you for your reply.I really feel for you.
it took me a long time (and change in senco) to get my son checked for ASD, I have been saying it since nursery and they all kept telling me he isn’t but his new senco teacher spotted the markers after 1 day of observing him!
She did the referral during the October half term and the ASD team has only just accepted him so now I’ve got to wait till he gets to the top of the list before they see him!
The school put in the referral for the continence team once for them to say no and then the gp has done it as well so I’m hoping that one goes thru.
Has your son had a abdominal x Ray? I had to get stroppy with the gp to get it done 3days after the I was told he had a blockage in the left side of his bowel and we are waiting for the results for that, I’m hoping it comes thru this week and then I’m hoping that he will up the dose of movicol or do something else.
Another gp did the referral for the peadtric gastrointestinal unit which has come thru now but the have no appointments (typical) so now waiting for them to contact me.
At the moment he is on movicol (I make it with apple squash and he will only have it at dinner time) sodium picosulfate (he has to have at bedtime) and toilet time (with I pad) for 10 mins half hour after he has eaten but he is still having accidents that he doesn’t feel so I now know that it is just leakage still but at least he is starting to shift a bit every day and not every 3 days as before when he was full.
I am also trying to cut anything with gluten in (difficult when he wants to live on chocolate spread sandwiches and older siblings keep eating his bread 🤦🏻♀️)
One gp told me to try prune juice but we haven’t tried that yet as my local shops haven’t had any.
I’m glad the school is supportive for you,it helps when you have the back up of the school, mine goes with spare clothes, wipes and nappy bags in his school bag and the school will let him go to the toilet whenever he needs to (again after arguing with them that he can’t hold it when he needs to go he needs to go).
I agree with you hun there is very little support and it is exhausting but I find it for silly things like going for days out I seem to dread days out now and always having to take at least one pair of spare clothes in case he has a accident and people looking at you in disgust when he does in public, the washing machine always seems to be on washing soiled clothes (luckily my husband hasn’t moaned about that especially with the gas and electric going up) and I have spent the past week arguing with gp’s over it (he senco teacher is impressed that I have got this far in a week lol).
I now feel like a really bad mum as I never knew he was contispated I just thought he wasn’t going to the toilet and he has never told me that he has been in pain with it (he masks pain).
I hope you get somewhere with the phycologist about your sons eating habits I wonder if they can refer him to the peadatric gastrointestinal unit for investigation for you it may be worth asking.
I will keep you updated on our journey and I hope we both get the help we need for our boys.
Hi, this must be so awful for you both! If your son’s bowel is impacted lactulose will not clear it. You need something stronger such as movicol or suppositories or possibly both! My son used to hold his poo, sometimes for 2 weeks at a time, and would become impacted. It took us seeing 5 doctors, 2 health visitors and a nurse before a locum doctor prescribed suppositories and large doses of movicol to clear him out xx
We are on movicol but only 2 a day and sodium picosulfate at bedtime, after speaking to another dr yesterday evening they told me ‘when he is going regularly, soft consistency and he is not straining then wean him off, but he will probably become constipated again ’ I’m not happy with that as I know the blockage isnt cleared he has only been on them a week and Sunday he spent the day in pull ups as we was having leakage again and I’m not prepared to put my son thru it again, I told the dr he is not ready to come off them so I will not wean him off them. He has a appointment with paediatrics in October so if I have to keep him on the little dose of movicol and the sodium picosulfate till then so be it at least it will keep him moving a bit until they see him.
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