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| Maybe some good news for you!!! I have an 8 yr old son who has battled with this problem for nearly 5 years. We finally seem to be winning!!! After years of doctors, paeds, gastros, occupational therapists, hospital visits, various medications all of which achieved very little, we have now gone nearly 6 months without incident!! A huge feat as we were needing to bring him home from school to shower and change most days and 3 major accidents a day were common. Our secret??? Actually I believe a combination of factors - removal of dairy products and anything highly acidic, a daily dose 10ml parachox, compulsory sitting on the toilet before and after school for 15mins (with DS and games), moving to a new city and generally just growing up and maturing. It has been a very long and difficult road - do not underestimate how hard it is to get my child to sit on the toilet. One last aside he has another boy in his class with the same issue and my child came home and complained about him smelling and seeing poo through his shorts!!!! HE TOTALLY DID NOT RECOGNISE HIMSELF IN THIS SCENARIO!!! Interesting??? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Part two of my long winded response. On days where she had no "bad foods", that day or the next her BMs went from 1-3. Again, I am not a scientist but this is what bothers me about all the medical reports I read. First, no one knows why this happens. Two, they don't know how to treat the problem, only take a stab at the symptoms. Three, I guess my child would fall under the even further ambiguous category of "nonretentive encopresis" as she has never had constipation, been fully cleared on the behavioral issues by a psychologist, cleared of any intestinal blocking, been aligned by a pediatric chiropractor for over a year and yet, here I am on this web page because the custodians of medical knowledge simply do not know what to do. And again, I ask the question: Does this go away? DO children simply out grow this as many pediatricians have said? Since they are the ones that are so quick to send us out of the office and into the arms of a specialist to follow the same routine over and over again, I don't have much faith in that statement. |
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| Sorry this has taken so long to get back to you. Here is what I did and I have some thoughts at the end I would like to share with you. This may sound more complex than it is, but in truth, it is very simple. Simple things work best I have found. I set up an excell spreadsheet where each day was a vertical column. I broke it down into hourly segments to encompass her entire waking day. I wrote down everything she ate and drank all day long and what time she ate it. I charted five things: BM, BM on her own, accidents, bad food, and whether she received miralax. I wrote down the time(s) she had a bowel movement and indicated whether whe went on her own or went at my request. I indicated how many accidents she had on a daily basis. I also indicated whether she received her daily dose of miralax. And I labeled "bad" food as high fructose corn syrup and dairy. I color coded accidents in red, successful bowel movements initiated by her in bright blue, bowel movements due to my making her sit on the potty as dark blue, high fructose corn syrup and other "suspicious" foods in purple, and miralax in black In order to make this meaningful on a chart (which your computer can do for you) I assigned values to the colors: Red was one, bright blue was two (because I felt that getting the signal and acting on it independantly are the ultimate goal - I assigned this one a higher number than the rest), dark blue was one and the other colors were worth one. I then used a chart where the days were on the bottom and the left column was numbered 0 - 7. So for example on Monday if she had two accidents, the red line was at two that day, if she had five bad foods that day that point was at five, if she had on bowel movement on her own that bright blude line was at two. Over two months, as I connected the dots on the graph, there was an inverse relationship between the number of bad foods and the number of times she had a BM. I'll continue this on |
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| hi mlbiscuits My son has been recently disagnosed with fructose malabsorption and we are trying to avoid frutans. Have had no major success yet - although dietician said it could take three months to eliminate existing fructose build ups. I am curious about the values you assigned when you charted the fructose/accidents - can you tell me more abaout how you approach the charting you used. |
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| My beautiful seven year old daughter has all the classic symptoms that we all read about in these dialogues. It boggles my mind that there hasn't been a correlation between what bodily changes occur to young children around the age of four and the symptoms of encopresis. I believe that everything has a cause and effect. Is this condition a symptom of something that occurred earlier in life and manifests itself around four years of age or is it a build up of some allergy that takes four years to show itself? I believe there is an answer and while treating the symptoms is obviously important in the present, we need to find the underlying cause. I charted all the food and drink my daughter ingested for nearly two months along with the bowel movements and accidents. It was hard to see any correlation until I assigned a value to each item and put it on a graph. There was definitely a correlation between fructose ingestion and frequency of accidents. Has anyone had any luck eliminating fructose (and high fructose corn syrup) from their child's diet for three weeks or more? And can anyone tell me, do children grow out of this? Is there light at the end of the tunnel? |
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| Welcome! I can so relate to your feelings of hopelessness. My daughter is 8 and in grade 3 as well. She was diagnosed with encopresis at age 4, but it started at age 3 with the toilet training stage as well. Since I found this discussion forum, it has given me hope knowing I am not alone. Over the past few months I haven't been praying so much for it all to end as much as for the strength and patience to deal with this condition 'one day at a time'. There is no specific cures for encopresis but there is support to deal with it effectively. We currently have a team of professionals giving us support with all aspects...physical, behavioral, psychological and spiritual. It's through support from professionals, family, friends and other parents that will get us all through this. We (my husband and I) remain hopeful that our daughter's condition will continue to improve. As she gets older she is learning to take more responsibility too. Some days she takes more than other days. My daughter was hospitalized once for 4 days at age 6, having a tube down her nose. It was difficult. Since then we have perservered on the roller coaster of good days and not so good days. I find that when I deal effectively with my own feelings of frustration, fear, and hopelessness, my daughter too is more responsive to my support. I used to think that she didn't care as she has mostly avoided acknowledging that there's even a problem. She can still play for hours with wet, dirty pants....(I don't think I'll ever truly understand that). Lately, she has been somewhat better. I also believe that deep down she feels the same as I , and as her parent if don't deal effectively with my feelings, she likely won't deal effectively with hers either. Hang in there. Thank you for sharing and hope to hear from you all again. |
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| Welcome Imm08id I hope you have had a chance to read back through our postings and have some comfort that you are not "alone" at dealing with this problem. We share our UPs and give each other advice - and just as importantly we also share the downs. |
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| Yes we have done all the rewards also. Reading on the toilet, playing cards, etc. etc . | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I mean molasses and milk enemas. And a tube in her nose with irritated her throat. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I just found this website chat group. My daughter is going to be 9 in January, she in 3rd grade and we have been battling encopresis since the age of 3. We started potty training at 3 and she never had a bowel movement in the toilet. She always urinated and never ever wet the bed in the beginning. We were never harsh with potty training with any of our kids. Our daughter is a happy person and still surprisingly has a good social life, close friends, is a role model in her class, has good self esteem, gets excellent grades and we have been told she is above average. Also would like to mention excellent coordination. Yet she has this problem We even sent her to a child psychologist for several months. She loved her and they played feeling games all the time. But, my husband and I felt all we accomplished was a high doctor bill and things were still the same so we quit sending her to the thearapist after last school year. She has been hospitalized twice. Last October 2007 she had fecal impaction. She was in the hospital for 5 days. They had to put a tube down her throat and give her some stuff called GoLitely? I forgot the name of it. The nurses had to give her molassed and mild enemas because the stool was so hard nothing seemed to phaise it. The doctor even had a specialist check for a blockage in her colan because the bowel wasn't moving. There was nothing blocking it. Finally after 5 days we got her cleaned out. I'm concerned that we have had her on miralax for a few years now including an antibiotic daily so she doesn't get another urinary tract infection and medication for her bladder which she lost control of for a few years now. which was caused by her frequent constipation and hard impactions. In September of 2007 she got a kidney infection caused by the frequent soiling from encopresis. We feel like she is never going to get better. She fights us on having to use the bathroom. She is tired of it. She wears pullups all the time. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Thanks Naring. Sounds like your son has some feeling to go poo and will go to the toilet on his own. I will mention fructose malabsorption the next time we have a Dr. appt. Like you said having the diagnosis doesn't fix the problem but it sure provides some answers and you have something to work with. Will go for now Thanks again Jo |
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| Elimating the gluten is causing us the biggest problem - we are yet to find a bread he likes and some of the products like gluten free meat pies just dont taste the same for him - whilst we were away on holidays it was difficult - we couldn't just "pick up lunch from a local bakery" - we have a lot to learn. We live in melbourne and there is a gluten free exhibition this weekend so we hope we are able to do some product sampling and find things he is happy to accept. He can have some gluten (ie he could have a crumbed veal snitzel(breadcrumbs) but he should have a snitzel burger unless it was gluten free bun). Now the big question - has it helped with his change of diet -- the dietician said it could take three months to completely rid his body of built up fructans etc -- so it will take some time to see if we do get an improvement (and of course on our recent holiday - we had times were we did not really have much of a choice and we wanted him to enjoy what was really a long overdue - wonderful family holiday away in the tropics, so he was really good at not having his favorite "mangoes" - we all went without - but we would have take away meals and there may have been some flour in the dishes. I let him have mc donalds - chips were okay and although it would have been better to have no bun - we compromised and got him to only eat part of the bun - for a kid - it is so hard to go cold turkey and have none of what you are used to. We did find a burger bar that did a gluten free burger - but when we were there they had run out of gluten free buns. Finally - is this the answer to our years of "accidents" and accompanying denial/refusing behaviour - I think it may be a path of reducing the likelihood of accidents- but we still have to "manage" the encopresis and the mindset that accompanies it. Hope this helps - I will keep you updated as out journey progresses | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi Soxsoxy - sorry to take so long to get back to you - it has been school holidays and we have been away. With regard to your question about FM - apart from the "accidents/encopresis" - my son is "windy" and when he has to go - he generally needs to go in a hurry, if he delays thats we he he can have an accident - I have seen him literally run and jump over furniture to get to the toilet. ON these occasions the poo tend to be loose (and smelly) - would I have attributed this to FM - on my own account - no. I have an aunt in law who has problems with fructose, lactose and gluten - she developed reactions to these when she was in her fifties and I know when she inadvertently has something with any of these - she is literally housebound for the next two days and suffers greatly - as such she rarely ever eats out and is extremely vigil about her diet - we have discussed my son over the years and even she didnt think his "problem" was the same. But like all of us "searching for answers" - it was reading Ireadlabels messages - that made me think i had to at least confirm whether or not it was possible. As she has said - what if - the reason had to do with something that was really beyond their control - and based on what happens to my aunt if she has fructose - I really didnt think he would test positive - but then there can be differing degrees of intolerances. Once we got the diagnosis - what the dietician said - does make sense - most of us "absorb" the fructose in our stomachs - but for my son the fructose travels into his bowel and creates methane and problems. For him (unlike my aunt) the side affects are not necessarily the next day - but more a case of when he has an overload of fructans. Elimating the fructose has been do - able - avoiding apples, pears etc (i used to give him an apple a day in his lunchbox - thinking - good fibre - but not realising this was causing more problems than good). | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Yes, it is a relief to know that we are not alone. Thanks for posting. My daughter is 8 years old as well....she was diagnosed with enco at age 4 and it certainly has been a challenge. Knowing that we are not alone has definely helped me to cope. We have a team of professionals supporting us all as well with the different aspects... physical, emotional, behavioral. None of them have any specific answers but it helps us all to feel less isolated and alone. Take care... |
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| I've just read out some of your comments to my partner and we feel so relieved that its not just us!! My 8 year old son takes no responsibility for his problem. At one stage we were maintaining on a mixture of high fibre weet-bix with selium husks (covered with a mountain of sugar to disguise the taste), but now he is refusing to eat it. It took an hour in the bedroom and lots of excuses to finally get him to eat it yesterday. It seems to me that the whole house constantly smells - and he never seems to remember to flush. Washing the undies even involves adding vinegar and disinfectant in addition to the washing detergent to remove the smell from the washing machine. Think I'll try yakult next week and see what happens |
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| I am curious to know what symptoms a child with fructose malabsorption has. Naring...you said previously that your child has "bad weeks..that create havoc.." What do you mean in terms of the symptoms? Do you mean just lots of soiling? or are there other symptoms too? Please let me know. Other than some constipation and some soiling, my daughter does not complain of any pain or exibit other symptoms, so I don't know if it's possible she has fructose malabsorption. My daughter also never had any bowel or intestinal problems as a baby....this all started at about age 2 1/2...at the potty training stage. You look forward to hearing from you. thanks, |
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| Just wondering if your child has any other symptoms besides constipation that made you think it was fructose malabsorption? From what I have read about Fructose malabsorption there are other symptoms besides constipation. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi Everyone - its been a while since I have posted - but I have been waiting to get hydrogen breath test, results and follow up appointment with dietician (saw her last night) to then report back. Yes my ten year old (encopresis since he was 4) has fructose malabsorption (many thanks to ireadlabels - for telling us about the condition). For those who havent - please read back to her messages and follow up. It will possibly take three months to elimate exisitng fructans than he cant absorb (and travel to bowel to create havoc). Lots of things we have to elimate from his diet from now on (apples, pears. onions etc and choose gluten free - many things we were giving him to add the fibre - were actually making things worse!!!!) We have always wondered why he has these "bad weeks" which we cant attach to any particular reason - now possibly they have occured because of the fructan build up over the prior couple weeks and depending on level of fructans in preceding weeks diet this may have taken two weeks or may be four weeks to reach "overload" It does explain so many things. Although I think the "mind control" is still part of the ecopresis as not everyone who has FM - has encopresis . Interesting to note that dietician - who knew about fecal impaction - had not heard of "encopresis" she is going to do some reading before our next appointment (december)and I hope this is okay by all - but I also gave her this message board details - to help her better understand - wont it be wonderful if a professional would take the time to chat to us. She was concerned that we had been on senokot for so long and did say movicol would be better. But we need to wait for a time when we are "free" and have nowhere to rush to for a few days. Will keep you posted on how things go as we follow the diet - but please, please. please read original ireadlabel messages and do you own reading about fructose malabsorption. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi soxsoxy! Yes you are right there havent been many messages at all and it is nice to here advice as for all of us it is a difficult issue. Glad to see you could get something similar to Movical. Well my case now after reporting sometime ago is that my boy is still having bowel complaints it is like he has slow transit constipation (he never held back his stools)I tried the marker creamed corn and it took 10days for it to come out in his stool. But he is experiencing other issues to now he hasnt been well for the past 4mths or so and his blood work is all over the place so whatever he has I think his soiling/constipation issues are a secondary factor. My boy is now back on Movical Half satchet daily along with something new Dulcolax SP drops 4-6 at night. As the lactulose and drops still took him 7 days to have a bowel movement. Take care |
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| Just to let you all know that the PEG laxitive (equivilent to MOVICOL) my daughter is using is working well. Don't want to get my hopes too too high, but my daughter is having 2-3 poos on the toilet/day. And they are soft and broken-uplike. I have been feeling much more relaxed and hopeful, which too impacts my daughter. My overall feeling with this laxitive is that it will work better than what we've been using for the past 4 years. As well, we are going to increase the frequency we see the psychologist to address my daughter's resistent behaviors around toileting. I've noticed that there has not been as many posts from others. It is so important that as parents we support each other, thru it ALL. I've been on the verge of a breakdown at times and this message board has provided me with the opportunity to vent. I've received helpful suggestions and ideas to help me cope more effectively. Although our stories are different, we are all dealing with similiar feelings. Hope to hear from you soon Thanks. |
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| I know its still early, but the new stuff that I'm using seems to be cleaning my daughter out. My daughter's stool is loose, so she's had a few accidents (at home and at school), but I feel better knowing that the accidents are not because she's constipated, but because her stool is loose and on it's way OUT! I believe that the only way she's going to get any feeling back in her bowels is to keep the colon cleaned out. My daughter has been on Senokot and Lactulose for 4 years and although we've had periods of success, it hasn't lasted. I've been posting on this forum for a year now, and I've read alot about MOVICOL and how it works. I live in Canada and when I inquired about MOVICOL, my pharmacy doesn't carry it. I looked up the main ingredient of MOVICOL on the Internet....it is Polyethylene Glycol (PEG), an osmotic laxitive. When I inquired about PEG, our pharacist said he had it. My daughter's pediatrician prescribed it and so that's what we're using now. What I am most excited about is the fact that my daughter will drink it with some lemonade. I'll keep you posted as to how it goes. Love to hear from you Jo |
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| It seems we are making some progess and getting my daughter cleaned out with the PEG osmotic laxitive (don't have a specific brand name). Yes, I do know how much work it takes to stay cleaned out....we've been dealing with this for over 4 years. I think staying cleaned out will definetely help, and we are also going to increase the frequency we see the pschologist as well to work on my daughter's resistent behaviors. I think we need to work on the psychological and behavioral part of this condition as well as the physical in order to change anything in the long run. I'll keep you posted... thanks |
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| Hi Everyone, Thanks Chrissy, I will keep that number in mind if we have anymore problems. So far, so good, everything is still going great. My son has been great for over 6 weeks now. He is really making a great effort and isn't even getting reminded at school anymore. He says he just goes by himself. He really doesn't want to have accidents and get teased again. This has been a fresh start and even his behaviour is better. I noticed he doesn't have to sit at the front of the classroom, as he has always done in the past (not sure if this was because of the smell as well!) Hope you are making progress Soxy. This is only half the battle. Once they are cleaned out it still takes a lot to stay clean. Have you tried working out when she needs to go in the day? It may take a few weeks but if you can get that down pat it means she doesn't have to sit as often, which she will be very thankful for! Good luck and talk to you all soon. Kind regards, Jo |
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| Just a quick update....when my daughter was in the hospital she was given a Polyethylene Glycol solution which is the same ingredient in MOVICOL. But unless there is a tube down her nose, she refuses to take it. I checked with the pharmacy to see if they had the sachets instead of just a big jug of solution. They dont have MOVICOL here in Canada at my particular pharmacy, but they do have another brand (same polytheylene glycol (PEG)ingredient) that can be given in single doses as you can with MOVICOL. My daugther's Pediatrician said it would be OK so Im going to give it a try with lots of Gatoraide or Koolaide. Hopefully, it works but let you know what happens. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hello Ladies, Rjanie31, my sons Dr has put him on what sounds like the exact same program, and we seem to be doing good with it, Jowel69, if i remember right were you moving back to newcastle area?, if so the dr and nurse who rang me from the encopresis clinic were very helpful you can get the number from a local book with all health service numbers in it called 'Kelidoscope' |
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