Toiletting issues

Sounds like everyone has given some really good advice - and hopefully your GP will be a bit more understanding when you go.

Couple of things that might be useful - there are now some NICE Guidelines on Constipation which give guidance on treating Constipation - might be worth having these with you when you go to GP (although sorry if this is coming too late) - http://guidance.nice.org.uk/CG99/NICEGuidance/pdf/English

There is also a great free download called "One Step at Time" which gives advice on toilet training - www.continencevictoria.org.au/node/102

Hope this helps.

This sounds like a really good thing to do. Just to make sure im understanding this, even if he had an accident you would reward him?

Hi there, my son is 15 now and I never forget his toilet training. He was diagnosed at 3 but we new from age of about 2 that he had problems. He was a happy choppy up till then. 

Your son may be scared or not like the thought that 'he is loosing a part of himself'. This can spill over into when they that've a cut and see a bit of blood as in their minds they a loosing a bit of them and can't understand the concept that we make Moore blood etc.

What worked with our son was positive reinforcement. Making the toilet a positive place. We followed a very structured program and it only took 2 days until george was toilet trained. The weekend is a good time to tackle this. Wee totally focused on this and lined up postive rewards. This can rafavourite some new toys, a favourite toy, favourite sweet.

we would sit george on the loo we very half hour. He loved the leap pad reading toy. How he sat there for about 5 mins each time. Eventually he needed to pee and wanted his nappy. He was about 4 at this time. We sat him on the loo and he still held on but we still rewarded him. Then wen he sat on my lap downstairs he wet himself ( and me) but he was praised and sat back on the loo. The main thing at this point was that he had ' le go' of his wee and we had to make this positive for him by rewarding, reassuring and praising him. At the end of the day he did a wee in the loo! It was brilliant. The next day, we took him to the loo every hobut and still had the rewards ready. He asked for his nappy in the morning but I told him it was lotrampoline took him into the loo with a reward waiting ( which he only had once sat of the loo).

we took george to the loo every hour but as the day went on he point upwards for the loo wen he needed it. The great thing is too that on the same day he did his first poo in the loo too. Brilliant!

hope I've explained this ok. Is easier on phone but meassage me if you'd like to ask more.

if you decided to do something like this its important the school follow through to and to also make it positive and rewarding for him at school. He will pick up on any negativity from them so it's vital to get them on side and to make this positive for him outside the home.

hope it all works out for you

My son is exactly the same and has been holding in his poo since he was a toddler. The longest he held it in for was 7 days, when he did go he would scream in pain so the cycle starte dagain. After years of fighting the doctors, I managed to get some real support from the local community nurses who are actually trained to deal with kids & continence. They even spoke to the school after they complained about having to deal with any accidents.

He was put on Movicol and we had to basically clean out his bowels so they were clean & empty to start again. He now has 1 movicol every day to make sure his poo is too soft to hold in. We still have dirty undies sometimes as he tries to hold it in, but for the majority of the time he does go to the toilet.

I found a reward chart helps as well. If he poos every day on the toilet he gets a treat at the end of the week.

Speak to your doctor again and try and get the children's community nurses involved. Speak to a Health Visitor as well if the doctor is no help.

Good Luck, I really do know what you are going through 

Hi again,

Your son may be unable to let you know when he needs the loo due to the stretched bowel. Over time all the witholding and the build up stretches everything and then whe the bowel is eventually emptied imagine it then stays loose where it has been stretched (like a deflated balloon) so your son will not feel the sensation telling him he needs to go!  This takes weeks or months to repair.  If my son has a few days of not going to the toilet i am aware that the sooner he goes the better or we go back to square one!  Daily toileting over a period of a few weeks or months will allow everything to recover and the normal sensations to return.  You will have set backs, but you will suceed eventually.

Our boys have the extra challenge as well of the sensitivities on the spectrum and possibly not being as aware as others would be of these sensations, esp at times of anxiety, and school may be one of those times.

It will get better, it will just take time.  Sometimes by the way Movicol is given with the dulcolax to make the poo softer and easier to pass esp if it has been a couple of days.  The movicol works well in conjuntion but they have to drink more in order for it to work well and not to get dehydrated.

The summer holidays will be the perfect time for you and your son to get used to the meds and hopefully all being well all will be improved before school starts again.

HAPPY HOLIDAYS!

Puffin

Thanks for your reply. I agree: it is so painful to see your little one suffer like this. I'm going to insist on a referral. My GP has point blank refused to refer him for anything else, as he has so much going on, but I think I will put my foot down.

I do worry that he'd have accidents at school, as he is totally unable to say when he needs the loo at the moment, which is so bizarre, as two years ago he was perfectly trained. I'll perhaps try to begin the medication in the school holidays to get used to it, as I would not wish more accidents on his poor teachers. After all, it is not their job to clean him up. While I feel so sorry for my poor little chap, I do feel sorry for his teachers too, having to deal with all of this.

Good luck with your son. He sounds like he is doing much better now, and I'll be thinking of you.

Thats ok, i understand.

I was really worried about "accidents " at school with the dulcolax because it is a stimulant, it has never happened.  I DID TO BE HONEST KEEP HIM OFF SCHool at first if he was on a high dose  of the dulcolax (wich is normally increased every other day if he has not gone to the toilet).  i did not want my son to have the embarassement, but eventually i decided to send him and see, that and the school were giving me a hard time over absences!  i realised he did not want the embarassement either andwould use the toilets if needed.  I informed school that he may not have time to request the toilet he may just need to go, and they were ok with that (my son is quiet and would be too shy to ask).  if an accident did occur it would only be the once as you would knowto reduce the medicine and be wary of that dose next time.  My son still holds on till he gets home, but atleast he then goes!

I WAS TOLD WHE HE FIRS SAW THE osp dr that it was something that took time to sort out if hehasd the problem for 2 years it would probably take the same amount oftime to put right as it is a slowly does it watch how he is with the medicines kind of thing and adj his diet as you go.

IT IS REALLY STRESSFULL TO WATCH YOUR CHILD SUFFER WITH THIS, My son still has problems after an illness or if we go somewhere new.  He also screams and cries when he finally goes with  the discomfort, and he is scared, breaks my heart, but the occasions are getting fewer and the medicine has reduced as he has gotten older and has more episodes of passing a comfortable stool after missing a day or two with the help of the medicine and eventually he can come off it.  HIS RECORD WAS 11 days!!! ten days on six or so occcasions horrible, but it can be sorted get referred and start the process.  THE GP means well but are not experts in this field.  Make sure you keep getting him to sit on the toilet twenty minutes after each meal time, the magic no apparently so the experts tell me it helped with my son.

Good luck again

TAKE CARE

Puffin

Thanks for this. It's very helpful. Sounds very similar to my little boy. He's been like this for about a year and a half now, and yes, our GP just says to drink more orange juice. The doctor who prescribed the laxatives was a urologist, so not an expert in bowel things. I really need to get referred to an expert here.

With the Ducolax, you say that it stops them from witholding. How has that effected your son at school? My worry is that if my little boy cannot withold anymore, he will just have accidents daily at school. As things stand at the moment, he has only soiled himself 4 times over the course of the year, though he does wet himself more regularly. Generally he is able to hold on with poos until the end of the day, and then at least I can get him to the loo at home (which is still traumatic!). I just don't want a situation where teachers are having to deal with him constantly soiling himself at school, as they have been pretty difficult about the few times it has happened so far.

Once your son was on the Ducolax, was he able to say to you when he needed to go to the loo, and get there in time, or did you have lots of accidents?

Sorry for the personal questions!

Hi Stardust,

Sorry my last message was hurried, had to collect my son from school.

The Dulcolax is not a laxative but a stimulant making your son less able to withold and hence stretch the bowel which can cause more problems than giving the stimulant, so i am told by my sons doctor at hospital.  The diorroeah (i have a complet mental blockae on the correct spelling now, sorry)! your son experiences may be where he has witheld for so long the gut or bowel litterally leaks diorreah like poo around the blockage.  My son tried all the laxatives, Senna, Movicol and others but the Dulcolax is the only thing that really worked.  i also found a referral to the child Ped outpatiants helped as you spoke to an expert in that field ratherthan a caring GP who so often just suggested drink more OJ!!  If you get referredquickly your son may not need the Dulcolax and the laxatives may be enough, which would be great.  UNFORTUNATLY BY SON HAD THE PROBLEM FOR 2 YEARS BEFORE HE was referred and by then he had afear of going to the loo because of the discomfort, so get it dealt with as soon as you can.

Hope this helps.

Thanks for your reply. I'll try that. One paediatrician we saw did suggest laxatives, but my son also has unexplained bouts of diarroeah from time to time, so I was reluctant to try that. What you mention about the bowels stretching certainly sounds like what is happening. I will speak to our GP about some sort of referral.

Hi,

yes my son has and still has the same problem and he is now six!  I found the witholding caused the bowels to stretch so much that eventually he lost the sensation that he needed to go, everything was so stretched!!  Bribery worked on the odd occasion but in times of stress on holidays at school he would still withold!

Eventually the doctors tried many different meds, he is now on Dulcolax (this really worked) so he could not withold!! and avoid the bowel being stretched any more.

Talk to your doctor or ask for a referral to the local hosp regards constipation.

Good luck!

I agree that the system does not allow for any leeway. I am a full time teacher myself, so although I would LOVE to home school my little boy, I am unable to. He has been in school since just turned 3, and I do feel that the structured environment has suited him better than day nursery would have done. He is reading and doing extremely well with numeracy. The main problematic issues are the total lack or interaction with other children, and the toiletting issues.

Luckily in September he is starting at the school where I teach. I will be on the spot when problems arise, and I will will know his teachers well. I have been open with them about his issues since Easter this year, and so far they have been supportive.

I am working through possible ways to help him and support him, but the toiletting problems are so, so distressing. I just don't know how to help him, and am wondering what strategies other parents have used, whose children have had similar problems.

http://en.wikipedia.org/wiki/Anal_retentiveness

this is a real problem for me at childhood,, school toilets, too cold in temperature and touch of sinks etc, overwhelmed at school, confused at school, toileting self, the problem here is... HE IS TOO YOUNG TO GO TO SCHOOL, like me, I was thrown into school at 4 years old,,, THIS SOMETHING THAT I BELIEVE YOU SHOULD NOT START SCHOOL UNTIL YOU ARE READY.. especially if you have an autism condition.

Autistic child need cueing to move into overwhelming environments. THESE SO CALLED AUTISM PROFESSIONALS DON'T HAVE A CLUE ABOUT THE CONDITION, THEY JUST TRY AND SQUEEZE YOUR CHILD INTO A SOCIAL NORM SYSTEM UNDER TRAUMA UNDER THE GUISE OF ASSISTANCE.

Take your child out of school. But will there system allow you too ? as they don't give a shite !