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| Hi Everyone, Sorry it has been a while since my last post but we have been on the move. Glad to now be back home in NSW. My son has started back at his old school after a year away. Thankfully we have had no accidents at school and he is determined that there wont be. We have been accident free for 4 weeks now, yippee. Like you all I thought this day would never come! We had a few problems after our hospital stay as he was still resisting the sitting and Movicol. He has relunctantly given in to the sits as he knows it is the only way to stay clean. I have now weaned him off the Movicol all together and it has been about 2 weeks now since he had any. I have been getting him to sit 20 mins after lunch and the same after dinner. After doing the diary it worked out these were the most productive times and he has been managing to go every time. The diary was a great way to work out when he was going and this way he doesn't have to sit as often (which has always been the main problem). I thought this might be a challenge as he has always been bad at school but we are working with the new school and he now has a Year 6 buddy to remind him to go. I do believe that it all comes down to them really wanting to be better before they will make the effort. I think my son finally realised that he had another chance by starting a new school. It was really starting to affect him, being teased at his previous school. His behaviour has even gotten better and he has made new friends. I know that he isn't yet cured because we still need to remind him to go to the toilet but at least there is light at the end of the long, long tunnel! So to everyone out there, keep up all your hard work and never lose hope! My son is now 8 and we have been going through this for 6 years. |
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| I know it's not easy get kids to sit still anywhere, let alone the toilet! I suggest to my daughter to take a book with her or a kids magazine.. Although this kind of does defeat the purpose which is that they are supposed to be focusing on relaxing their bottom and doing a poo. I think it is important to get your daughter to take responsibility herself. Remind her often to check her undies. I know sometimes I am guilty of checking my daughter myself and I don't think this is good, although I still do so before she goes to sleep. It's so demoralizing I'm sure to pull their undies down and check their bottom. Awful! You just have to keep on top of it and be consistent. Perhaps the timer would work well for your daughter as she can see the minutes counting down. Worth a try. My daughter like it. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Sitting on the toilet routinely in the morning is not a problem for my daughter. However, sitting after school and dinner is a whole other ball game. When I remind my daughter, she refuses. We've tried incentives, consequences and all the encouragement in the world....but it's simply "No". I'm sure she feels as resentful and frustrated as I do. I choose to drop the nagging/remending rather han engage in a power struggle. I don't know how to get her to sit in the afternoon and evening without the power struggle. My other question is.....how do we get our 8 year old to recognizing that she has poo in her undies on a consistent basis, so that when she does have an accident at school or is with her friends she will change herself?? She has stopped to change herself in the past on more that one occassion, before anyone else noticed, but she just doesn't do it consistently. Not sure why she does sometimes and not others. Feedback and suggestions is much appreciated. |
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| Forgot to add to keep going with either half movicol daily or half of a normal sachet daily. At least it's not too much to drink! | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| After 8 weeks of waiting to see a new specialist, who proudly calls himself the 'prince of poo' and did come highly recommended.....here's the outcome for my 9 year old daughter..........Firstly we are not alone - it appears to be very common. Secondly and though our partners never believe us.....IT IS NOT THEIR FAULT and THEY DON'T REALIZE HALF THE TIME THERE IS POO IN THEIR UNDIES. It can stem from one single occassion where as a young toddler they had a painful poo and bingo - it just keeps going round this vicious cycle. Anyway, the long and the short of it is to re-train them to SIT on the loo for 4 minute sessions after breakfast; home from school and after dinner. They must sit for the 4 minutes unless they do a proper poo. Then they must mark it in a diary each time that they have sat, they have or have not pood and clean/dirty undies etc. The trick I am told....is consistency. This must be adhered to strictly for at least a month. I bought my daughter a timer, but I am sure the fun of that will wear off by tomorrow. Anyway, hope this helps all those mums who are suffering. Let's face it, the kids don't give a rootin' tootin' (system would not allow me to use the other word! .....'scuse the pun. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| plus, just wanted to add, how frustrating is it to have (apparently well-meaning) relatives or friends pointing out rather loudly that our child has had an 'accident', and have we tried sticker rewards or other incentives?!? OMG, if it were only that simple. I think I have shares in sticker companies, for the amount I've bought! | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| hi all, my daughter has a paed appt tomorrow, yet another person we have to go through the whole long winded story with LOL :) We were originally wanting to see anther specialist but the waiting list was (wait for it) over 6 months long, ridiculous! So were are seeing someone else tomorrow and will review our current plan. With prep year looming I am considering talking to the teachers at the school now, to let them know about the problem in advance & what they will be dealing with. My daughter has started getting teased at daycare and these are only 4YO's; can only imagine how ruthless the other kids will be at big school...this condition just sux... | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi all. Just needing some ideas as to how to get my daughter to take responsibility to clean herself up after she has an accident. Any suggestions? She will continue to play, no matter where she is, after she's had an accident. Doesn't matter if she's in public and her friends are around or not. And the more I prompt her the more resistant she becomes. My daughter is 8 yrs old and she starts grade 3 in September. I've come to accept the fact that the encopresis probably won't stop in the near future but I pray that she will learn to deal with the accidents promptly after they happen. My husband believes whole heartedly that she will outgrow the "irresponsibility" and seems to beable to deal with it better than myself. I'm feeling quite anxious and frustrated. |
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| It's a visous cycle. Within 2 days my daughter can get completely bloated with poo. The most frustrating part for me is not that my daughter gets plugged and has accidents, but that she resists the toilet sits and cleaning herself up. I'm learning that her avoidance is her way of dealing with her feelings around it. I believe that she too is embarrassed and frustrated. The physical aspect is very much out of her control, but the cleaning up afterwards is what I hope she will learn to do more consistently. To help her get unplugged she continues to take stool stofeners and laxitives, which helps her to poo and stay cleaned out. I do know that she has some feeling because when she has no pants on, she goes to the toilet on her own without any prompting which gives us hope. She obviously knows that without pants on it will hit the floor, but when she has pants on, she doesn't care that she has to sit in dirty pants...another frustrating aspect for me. A part of me believes that it's going to be her friends, not her parents, that will help her realize that it's socially not OK to have poo in her pants....much to my dismay and fear. It's difficult to see my child learn the hard way. I will never stop talking to my daughter about it and teach her to take responsibility around what she does has control over. I can only remain hopeful and pray that the light bulb will go on for her before she learns the "hard way". |
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| Hi dance, i know how you feel about school next year, i feel so heartbroken to think of my baby boy getting teased, i dont know what to do about that but hope it gets better by then, but i know its not going to be magically gone by january | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| The Nurse from the encopresis clinic rang me for the phone interview, and was helpful, my little fella is back on movical 1/2 sachet 3 times a week and parachoc every 2nd day, and we got a timer and he has to sit on loo 1/2 hour after brekki for 5 mins and again in the arvo for 5 mins and we seem to be doing ok, just going through everyday as it comes and ive got a much better attitude with coping with it aswell i think just talking with the nurse and having this clinic for support if i need it has helped me be much more positive and calm, i think by me not stressing out too much i have noticed he is more willing to sit on loo and to tell me when he has had an accident, hope everyone else is going ok | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| By focusing on the successes, we remain hopeful (my husband more than me on most days) that she will continue to improve. What I do know for sure is that we can't do it alone and that we need support from professionals and from friends and from others like you! |
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| Yes, it is a relief to know we are not alone. I live in Edmonton, Alberta, Canada...and I do not know any other parents who are dealing with this issue in this city. My daughter's pediatrician, however, assures us (my husband and I) that there are many other parents dealing with this. So we are going to look into starting a parent support group. We both believe there is a need... My daughter was diagnosed with enocpresis at the age of 4 yr. She now 8 yr and continues to have encopresis. She has been through pre-K, Kindergarten, grade 1 and grade 2. She starts grade 3 in September. The social consequences that I have feared for 4 years have started to happen. I have talked to many of the parents of my daughter's friends and have educated them about encopresis and said that she has a medical condition that she has little control over. I have asked that they talk to their children to help them understand as well...hence support my daughter when she has an accident. So far, we have received lots of support. I figure the more I educate others and talk openly about the condition, the less likely my daughter will be ridiculed and teased. I also continue to challenge my daughter to immediately change herself when she has an accident. And I'm slowly coming to terms with the fact that my daughter's encopresis is probably not going to end any time soon, but I can continue to focus on staying calm, deal with my own anxiety, and learn to support my daughter in an effective way by reducing stess. Looking over the past 4 years...we have all made significant progress. My daughter's pediatrician believes that the key is to keep my daughter unconstipated, so that her intestine will strengthen and she will eventually regain elasticity in her bowels and the feeling to go poo. For the past month my daughter has not been constipated and her stools have been very loose. Because she has very little feeling, the stools end up in her pants as much as the toilet. |
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| it has been surreal reading these postings, they could all have been written by me about my 4yo daughter. My husband & i have been dealing with encopresis for just over 2 years now, and if i'd been told back then that this would go on for so long i would not have believed it. It started at around 18mo for us, our daughter became really constipated and had trouble passing a poo, it all stemmed from that one terrible experience and we've been battling it ever since. I too, like many parents on this site, cried when reading other parent's despair, we really did think we were alone, it's been so terrible dealing with this for so long by ourselves. It has been so hard, I get really emotional when talking about it, we too have only recently been given a name for this condition; even a paediatrician whom we'd seen for months never told us what we were really dealing with. At this stage we're just using parachoc; we've used movicol in the past and found our daughter developed terrible rashes, has anyone else found this? I have so much to say on this matter, and would love to share, it's soooo good knowing we're not alone! Our daughter starts school next year and I'm not hopeful. I burst into tears at the thought of her being the outcast.... | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi Jowelch69, i will let you know how it goes i have the nurse from the clinic ringing me on monday morning for a phone appointment and from there we will get an appointment,how long has your son had this condition? My little one was born premmy and i swear since his birth he has had bowel troubles but even way back then starting with the health nurse they always said that its normal a lot of babies get constipated but it never went away and ive had 2 kids since then and i now know that in his case it wasnt normal my others got a little bit of "normal" constipation but a chop and change of formula or adding prune juice or whatever always fixed it. I'm just trying to take one day at a time and trying to stay calm and positive with my boy but some days it can be very hard and draining as i'm sure every parent dealing this knows,how does your little one handle school i hope he is ok there chrissie |
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| Hi Chrissy, Good luck with the clinic in Newcastle. Let me know how you go as we are moving back near there next week. I lived there with my son who turned 8 today and no one told us about it either!! We found someone really helpful in Kalgoorlie and are making some progress if be slow. Also now on Movicol but 1 full adult satchet (cheaper) as recommended. Still having accidents at school when I am not there to make him go!! Doctor said it is really sohething they have to do decide to do themselves and it's just a case of managing until then. We live in hope. Good luck and let us know how you go. Jo |
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| Hello everyone i posted on this forum when it first started ,well my boy will be 5 in september and our problems are still going, i feel at a complete loss at the moment,i feel like such a bad mum because the last two days he has soiled all day and i regret so much that i got so cranky, i know this is the worst thing that i could do but i couldnt control it, im just sitting here in tears right now, im so worried about him starting kindy next year, just got off the phone to my sister who just says, well he is just lazy he has to stop pooing in his pants or he will be the stinky kid at school next year, no one in my family thinks it is a condition they think he is naughty, lazy and has complete control over it. Ive finally tracked down some more help apparently there is a clinic in newcastle that specialises in kids with encopresis, i cant believe all the docters and pediatricians ive been to never thought to mention this place to me, also my sons dad doesnt live with us and he refuses to see it as an issue, whenever i try to talk to him about how our son has been he just has the "he will be right" attitude, oh well thanks for letting me get that off my chest | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi all, I havent posted in a while as things have been hectic. My little man is seeing another SPecialist as the first one I took him too orginally said most times its behavioural which isnt the case with my son. He has never had full bowel movements in his pants just soiling from the leakage. I wipe his bottom then a 10 seconds later it leaks out of him again which is what is happening day and night. Tried the hydrogen breath tests to no avail, this Specialist has put him on 30ml Lactulose and 1 movical half satchet daily and it still took my boy 10 days for him to have a full BM. Another thing I have just tried to is to give your child a couple of teaspoons of creamed corn to see the transit time for it to come out in the stool. I had tried this 3 nights ago and still no show of all the creamed corn. Perhaps your child has a blockage of some sort we have had normal abdomen scans and nothing ever showed up as fecal impaction despite him not going for 10days or so then the next night or so he has passed a really bulky stool??? Cant figure that one out but that is why he is booked in to see a Gastro next month. The new Specialist I am seeing says the leakage to him is caused by Chronic Constipation Overload and like he said the poo has to go somewhere - hence the fecal seepage. Since going on the 30ml Lactulose and 1 satchet movical half daily he has been better and not as much seepage and he is managing to do a bowel movement almost daily. My specialist recommended only two sits on the toilet daily. He is in Clayton so if anyone wants his details I can pass them on over. THere is also other issues going on with my son apart from this so perhaps this is an underlying issue to his other concerns. |
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| Hi Everyone, Things have settled down a bit and now back into a routine. We have had an accident every afternoon since Sunday also wet every night. I have upped the Movicol to 1 full satchet as from today and 2 Minirin at night. We will see how he goes. I really need to be on his case the whole time about the sitting but he is alot more receptive than he used to be. I think the reason that he has the accidents in the afternoon is that there is no one there to make him go after lunch. the teacher knows about the problem but she is a relief teacher and I don't think she cares. Well only 3 more days of school now before the holidays so we will just have to see how he goes. At least it isn't as smelly as it was before and only once a day not up to 5!! The after school carers have been really good though and make sure he gets changed and goes and sits. Hopefully the increased doses of medicine might help. Talk to you all soon, Jo |
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| Hi All, My son came home today and everything going well so far. We have had 4 sits after meals today and he has been able to go every time. Last night went really well also and for the first time ever we have had 24 hours of no accidents at all, even at night. I can't believe how great this is. I know we aren't out of the woods yet but at least there is now hope. He also developed an ear infection in hospital so he is on AB for that too. He is like a walking medicine cabinet! He has been great at taking the medicine even taking capsules for the first time. Well I'd better go have lots to arrange before going back to work/school tomorrow. Regards, Jo |
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| So glad it's working out well for you and your son. Having the Paed there for you was meant to be. The support is out there, it's just sometimes hard to find. I remember by daughter also feeling better and losing almost 10 lbs....that was fluids and water as well as stool. It certainly has been a challenge to maintain cleaned out bowels...but then that's encopresis for you. Again, it will depend alot on your son and how much he is motivated to make on-going changes. My daughter isn't completely committed yet to making those changes on a consistent basis, so it remains a challenge to keeping her cleaned out consistently. Then again, there's the physical part of this that none of us have any control over, so it may be something she lives with for the rest of her life. Right now, she's 8 yr. old, so as a parent I am still very much involved, but as she gets older, I pray that she has learned to manage it effectively herself. My husband keeps reminding me that the less I worry and responsibility I take, the more my daughter will learn to take and be more concerned about. Easier said then done....I say. I do know that my husband worries less because he worries far less about what other people think. My kids are out of school for July and August (summer holidays here in Canada), so we'll see how it goes. Sometimes it's better since my daughter is not in school, but other times it's difficult with less structure and routine in place. |
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| Hi Everyone, Just wanted to give you all an update on how things are going. Well we have been so lucky, the Paed we got in the hospital is a locum from Tassie and Enco is her speciality! She has been running a continence clinic for the last 15 years. How amazing is it that she is only here for the week and it happens to be the week we are there! After asking me lots of questions and checking the xray, her suspicions were confirmed and it is just plain old Enco, thankfully nothing worse. She was quite disgusted that after all the things we have tried and doctors we have seen, no one really explained anything and tried to help us. She then recommended an enema which went well and then start on the Movicol full strength which he had to drink. We haven't had to have the nose tube, although after yesterdays effort I thought we may have had too. Today was much better as she portioned the Movicol out into very small cups and he had to have 4 over 4 hours. Yesterday He had more to drink over the 6 hours but he wouldn't drink it all as it just seemed like too much to him in the big cup. Thankfully we have only had 1 accident and he has been sitting after every meal and managing to do something! The doctor is also going to help with his bed wetting by starting him on Minirin? (not sure of the spelling) due to the fact that there is family history of Enuresis on his Dad's side. He has been alot better already after getting rid of all the poo which has been taking up all the space in his abdomen. So now we just have to keep this up when he gets home, I think that will be the hard part but he has been really good, and I think he feels a lot better now too. Well I will let you know how things go tomorrow and if he is out of hospital, they want to take an xray to check how he looks before they let him go home. Regards, Jo P.S. His tummy looks half the size now! |
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| Good idea about the DVD player,I forgot about that one. We took our portable DVD player and watched movies too. They even had a video player and videos available to watch in the hospital too. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Jo, do you have access to a portable DVD player? Last night we discovered we had no "dry-nites" left. And what do you know - a dry bed in the morning. Very exciting for everyone. Son extremely proud of himself and now wants a "treat". I told him he had to have a dry bed 5 nights in a row and Dad is going to play cricket with him and take him for a bike ride today. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi again, No, my daughter has not been tested for Hirshsprungs. For the first 2 years of her life, my daughter had very "normal" bowel movements. My concerns only started at age 2 to 3 yrs of age (toilet training stage). My daughter resisted toilet training from day 1. Up to age 4 she peed her pants a lot too....but now she typically uses the toilet to go pee. She never wet the bed at night...(or I can count on one hand how many times she did). She's a deep sleeper but never wets the bed. My daughter, while in the hospital, mostly stayed in bed. She didn't feel much like walking around. The last 2 days, she really didn't have much energy. We too did lots of coloring, reading, writing, games, etc. She slept off and on as well. She got out of bed to use the toilet (can't remember how often). She indicated on own sometimes she needed to go, while other times she was promted to try a sit. My husband also took one day off work and stayed with her and gave me a break. A few of us (myself and 2 nurses) needed to hold her down to get the nose tube in, which was traumatic. Then during the first night, she pulled it out in her sleep (not intentionally), so we needed to put another tube in the 2nd morning. But my daughter also knew that the other option was to drink the horrible tasting stuff, and verbally said she wanted the nose tube...even the 2nd time around. She was age 6 at the time and quite sure she didn't want to drink the stuff. I just kept reminding myself that my daughter was getting cleaned out and that she wasn't in the hospital due to a life threatening disease like cancer. My daughter is a very healthy active happy child and I'm grateful for that. Hope all goes well for you and your son. |
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