|
|||
|
Message Boards
|
|||
| there was less and less BM. My daughter is now 7. We have been battling this since she was four. We have gone the full gammet on testing - the conclusion is no one really knows why this is happening. Personally, I think chocolate is a good thing stay away from and high fructose corn syrup. We have been limiting those as of late. Not sure if that is it, or whether the "switch" has been turned on, but this past week we only had 2 accidents. That hasn't happened since she was four. I am an overprotective father anyway, and seeing my daughter go through this may have been worse on me than her. She just wanted to do what all the other kids were doing. She didn't want anyone else to know, ever, so we respected her wishes. We told her that this is a condition that thousands of kids have, its not her fault and that we know she can't help the accidents, but that she has to help us. She absolutely must be honest with us about her accidents, potty time etc, otherwise we won't be able to help her get over it. She is a timid kid but she stepped up to the plate and in some strange way I think it made her grow up a little as I never, ever questioned whether she was telling me the truth about what was going on (other than finding soiled underwear occasionaly). Good luck, don't get discouraged, and above all else, absolutely always be consistent. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Meg, We also worried about our daughter going to school and having to deal with the accidents. This is what we did and it kept the accidents down to a minimum at school. First, seven days a week we had her sit on the potty at the same time: 7:15 am, 3:00pm, 5-5:30 pm and 7:30 pm. - we were at least trying to train her to have a bowel movement at a consistant time, much like everyone else. She would not always have a BM in the morning but she almost always had an accident between 3 and 5 which is why we had to ALWAYS have her sit on the potty, any potty, as soon as she got out of school. We sent plenty of spare underwear, and a spare pair of pants in her back pack along with wet wipes and zip lock bags to put her soiled underwear in if she should have an accident. Her teachers were told what was going on and to VERY discreetly assist her should they suspect she had an accident. In fact, we provided literature to the teachers to educate them and made them UNDERSTAND that this is NOT a willing behaviour on the child's part. They MUST NOT blame the child as that would have terrible consequences at school. Every night around the same time we did the Mirolax. If we went a day or two without at BM we added a cap full (not cup) of mineral oil to her chocolate soy milk/ Mirolax concotion. She never seemed to mind it as we shook it up really well and gave it to her very cold. WE told her she had to keep shaking it too otherwise the oild collected on the bottom and she wouldn't drink it. If we had to, we gave it to her in shots. Friday night and Saturday nights were clean out nights (assuming the following day we could hang out around the home). We gave her either two doses of MIrolax or the mineral oil in her drink. We knew she would spend the next day needing to be by the toilet so we really couldn't venture too far from the house. Cleaning her out on the weekend seemed to help her out for the first few days of the school week. AS the week progressed... |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| thank you for responding "the girlalltheboyswant2dancew ith" are u able to identify what the key "turning point' in overcoming encopresis was for you. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Thanks so much for sharing....I do appreciate it. I believe that the encorpesis is as stressful for my daughter as it is for me (her mom).....even though her behaviors portray otherwise. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| (sorry don't know why but all my apostrophes came out as a weird code) | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi everyone, I'm 18 and I suffered with encopresis from when I was a baby until puberty. And I can honestly say I understand what you're all going through. I was a very stubborn kid and tried and refused so many different medicines that didn’t work, as well as some terrifying hospital experiences. I clearly remember having to take laxatives which would give me really bad stomach aches, which did clear me out, but then the same routine would happen and I would become blocked again. I also remember having to take a revoltingly sweet medicine in my orange juice where I would sit looking at it for hours crying, refusing to take it and one day I poured it into a pot plant so I didn’t have to drink it. Evidently that plant didn't last long! There was only one medicine I liked taking which was parachoc, and although it didn’t cure me, I did find that it helped soften the stools and I still take it sometimes. The most embarrassing moment of my life came from having encopresis. I was in grade 6, and had soiled myself without knowing. Some of the kids after realising I hadn’t stepped in dog poo teased me for smelling, laughing at me. I’d never felt so embarrassed in all my life. I then remember my mum picking me up from school where I was in hysterical tears and never wanting to go back. Now when I see people from my primary school I pray to god they either weren’t in my year 6 class, or don’t remember that day. I no-longer have encopresis but I have IBS. So to this day encopresis still haunts me and will continue to do so. Though I am not a mother of a child with encopresis, looking back, I know what you're going through. I remember my mum having to wash piles of underpants a day. She was so frustrated yet so worried. She would stay strong in front of me but occasionally broke down. I can honestly say that you have to stay strong for your kids, without my mum’s 100% support I think I would still have encopresis. So stay strong and hang in there!! |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| con't.... I have educated and speak regularly with my daughter's teacher as well so that she can be as supportive as she can. Encopresis is very very difficult and frustrating to deal with....for parents and children. I've come to learn that the cause can be differnt for each child...so there's no one answer. What does give me hope though is knowing that I'm not alone. I'm open to suggestions and I appreciate hearing from others going through the same range of feelings. Hope to hear from you soon. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi...not sure if you are addressing me (soxsoxy)? So much has transpired over the last couple of months. My daughter (8 yrs old/grade 3) has always refused to drink the go-lytely at home, so I inquired about another laxitive with basically the same ingredient..."polyethylen e glycol 3350". It is in powder form and I give her 10-15g with 1/2 cup lemonade each day and it's been keeping her mostly cleaned out. If she needs a clean-out I have kept her home from school for 2 days and give her up to 45g/day. She still has little or no feeling to go to the toilet on her own, but she has been sitting on the toilet regularly, after meals...which has decreased the soiling. If she does soil I believe it's because of the laxitive...not because she's constipated. I live in Canada, and no I haven't started a support group...yet due to time constraints. Currently, our family is seeing a group of Dr.'s (pediatrician, psychologist, play therapist and psychiatrist) who have been very helpful. My daughter is in play therapy, and my husband and I are receiving support to deal effectively with our daughter's behaviors, including defiance and encopresis. She has recently had some further testing done, and she has been diagnosed with Attention Deficite Disorder. We're not sure if it is connected to the encopresis, but we (my husband and I) have decided to put our daughter on a low dose of medication. It certainly has helped her to focus and not be so defiant, but it's too soon to tell if the meds will help the encopresis. The psychiatrist has had cases where once the attention deficite was treated, the encopresis disappeared as well. My daughter's pediatrician believes that if the intestine is kept cleaned out, the feeling to go poo will return eventually. So keeping your son's intestine cleanout is essential, according to my daughter's pediatrician. My daughter's school principal is also a Dr. in psychology, so we have the school's support 100%. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Am wondering where you are from??? We are from Melbourne. Your story sounds so familiar to me, my 10 year old son had the go-litely via nasogastric tube earlier this year...this helped him for a couple of months..I wonder if he regularly had this procedure done if it would allow his intestines/bowel to regain its normal size...he has had enco for 5 years now..we have done all the things Drs have told us to do, I am at my witts end. We are still on the neverending roundabout I pray we get off soon. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My son Jamie who is 10 years old has had encopresis for the past 5 years..we live in Australia..he is in grade 4 and I can relate to so much of your story.I am so sick of telling our story to a DR then to another Dr...it is most heartbreaking for us mothers to watch our children suffer with this...the embarassment and shame..I hope it will all end one day soon..we have had numerous trips to the Royal childrens hospital here..to tell our story over and over to Drs who seem to have just finished UNI..I feel like we are on a never ending roundabout. We had a very disappointing day today where the classroom teacher sent my son to the sick bay, and I was called to pick him up early from school as he was unable to clean himself up to return to class...Most upsetting for him and myself. I think it is wonderful you are starting up a support group...it is needed.Have you started it yet?? I hope your daughter is on the improve..would love to hear back from you. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Fantastic, mlbiscuits! I hope it has continued. Even if the streak is interrupted, it sounds like you are getting somewhere. Good luck! | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I don't know if this means anything yet but I thought I would share it: My daughter has not had an accident in four days! That is the first time that has happened in 3 1/3 years. The only thing that has changed, at all, is that I have forgotten to give her her vitamins, haven't allowed her to have any chocolate, and kept her off high fructose corn syrup. I am going to start adding these things back in to see if that makes any difference. Again, it may be nothing - but I'll grab at anything right now | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| when my son was diagnosed with FM we were advised to have him tested for celiac disease before we put him on a gluten free diet (need to have blood test whilst you are still eating gluten)- blood test was negative. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I'm wondering if you might be able to give me some advice. I'm not as far down the track as some of you - my son is 5 1/2. He is on Movicol and his specialist keeps telling me that things should improve soon (how long have I been hearing that!) He is due to start school next year and I'm not sure how best to manage that. He has between one and 4 soiling accidents a day, some of them quite large. I have spoken to the school and they are putting in an application for funding for an aide. But even if we do get funding, it's unlikely to start by the time school does, and probably won't cover even a small portion of his school time. I work, so I can't be on call to go to the school and clean him up every time, even if I wanted to. He doesn't deal with his accidents without prompting, and while he can clean himself up after small accidents, some are hard for even me to deal with. So my question is, how has your child managed at school? Have aides been available, have the school staff assisted or have they been left to their own devices? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi, I read on another parent forum that a mom with an 8 yr old daughter who has had encopresis for 4 years, just had her daughter tested for Celiac disease and she tested postive. Just wondering if anyone else has tested for Celiac? I know that there's been some discussion on Fructuose malabsorption on this forum, but none on Celiac. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My son is 8 and we have struggled with this from day one. He used to have constipation issues that cleared up after a while with Miralex, but the poo issues remain. We've been all over the place with this, but following up on this has taken a backseat to other health issues (adhd, and recently asperger's). But now I think we're going to be trying to tie in this condition in with his behavioral treatments. I only just found out this was an actual disorder and I am disheartened but relieved to have a name for it. He is not consitpated at all, just doesnt go. When he soils his pants most of the time, it's when we detect the odor and tell him to go change. He also scratches alot and I have to get on him about keeping his hands clean after that. It's taken a number on him emotionally, especially at school, and has caused a fair amount of stress at home. He's gone back to wearing pullups and I just wonder if this is the right thing to do for him right now. I am looking for the clinic that a doctor recommended to deal with this issue, but i am also looking up online what information I can find. So far basically the only thing I've seen is that a strict diet change works? I dont know, is there anything I can give to him NOW to see if it helps, while we're waiting for an appointment? his behavioral specialists have this in their medical charts but it's not really something that's been addressed as yet because we've had more immediate needs. How do you deal with this problem and school? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Its sure hard to understand this problem. My daughter who is 8 years old also does not care if she is wet or smells. She can be soaked and will not change unless you make her. She wears pull-ups everyday. She still seems to have no feeling to have a bowel movement. She wets the bed everynight. We always keep a thick layer of plastic over her matress and have to wash bedding everyday. She doesn't have any control over her bladder every since she was hospitalized October 2008 with fecal impaction. The hard bowel squished her bladder. She has been on bladder control medication since. Its hard to believe she has such a problem. She is at the top of her class in school which she likes very much. She has a best friend and several others, and is confident in herself. Except of course when it comes to going to the bathroom or having any control there. She does not sit on the toilet voluntarily. Someone has to always tell her to do so. I get worried sometimes that she may never ever have feeling to go to the bathroom again. We have been battling this problem since toilet training at the age of 3. We were real easy going parents with toilet training and never worried about putting much pressure on any of our kids. My daughter takes Miralax daily, oxybutin a bladder medicine and we put benefiber in 100% juice everyday. We seem to keep the stool moving through her doing this daily. She does not have the Santa Clause belly as often now. When she was hospitalized last year fleet enemas would not even phase her hard bowel. The doctor had to have the nurses give her molasses and mild enenemas every few hours. Then they had a gallon of golytely?? something like that in her IV. After we brought her home from the hospital the doctor had us continue with milk and molasses enemas. I believe it was 8 oz of milk and 8 oz of molasses. We have not had to give her one for about 9 mths. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Michelle, I have been, and continue to be, exactly where you are now. Everything the pediatrician, and the gasto specialist he will inevitabley recommend, will tell you to do, we have tried. All the tests we were given have proved negative and our daughter was never constipated (which led to my diagnosis of non retentive encopresis as our physicians were unfamiliar with term). As I said previously, we visited the gastro specialist, ran through all their tests, we tried the chiropractor, we tried supplements, we charted her food, give her mirolax every night, tried the reward thing, stand vigilant on her potty schedule, work her schedule around the bathroom all the while telling her this is something that happens to a lot of kids and it will get better. Most likely this will be a daily routine for you for awhile. But to keep it in prospective - I have a friend that has two kids. One has cerebal palsey and the other has autisim. If your daughter has blood in her stool (and its definitely blood not coloring from something she ate) that needs to be checked. Let me know what they say about that. I wonder if we shouldn't try putting a plan of action together with the people that read this and see if we can find a common denominator. If we pool from enough people, and set it up properly, we might end up with more data than the doctors. The doctor's don't have a clue, and who knows maybe they could use our data. Again, hang in there and let me know how you are making out. One more thing, Friday or Saturday night when the next day is not a school day or event day, I give her a Fleet laxative and/or maybe some mineral oil in her chocolate soy milk. This cleans her out pretty well the next day and I find it helps remove some of what has not been passed during her BM. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi mlbiscuits, Reading your post is just like readt about my own daughter who is 6 yrs old. She has been constantly soiling her pants for the last 8 or so months and claims that she does not feel the end to go to the toilet. Sometimes it happens one every couple of days, sometimes once every day and sometimes even four or five times a day. She doesnt seem to mind staying in dirty pants and does not change into the clean pants I always put into her school bag. When I pick her up from afterschool care I can always smell it but she doesnt seem to mind. The problem did not start until the begining of the year and we had no toilet training problems. I took her to a doctor and she though my daugther was constipated and suggested we give her one and a half teaspoon fulls of metamucil (spelling?) every morning and vita brits for breakfast as well as increasing her intake of water. We also started a star chart for "clean undie days". This seemed to work well for the first couple of weeks with only a couple of soilings. The accidents have increased again to nearly one every day. Last night her stool had bright red blood in it. Is this common with this condition? I am taking her to the doctors again tonight. I did not get an official diagnosis, but from the descriptions in all of these posts it does sound like my daughter had Encopresis? I am also worried that children at school will begin to tease her about her accident. Thanks for any help or input. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Thanks kneuks for sharing. You mentioned that it helped your son when he knew/saw someone else in his class with encopresis. I've been realizing lately that my daughter (now 8) is dealing with all the same feelings as I am as a frustrated parent. I believe that her resistance to sitting on the toilet, changing herself after an accident and consistently acknowledging the accidents is because she too feels frustrated, alone and hopeless. I like and agree about what you said...``the issue with Encopresis is that it is a case of trial and error for each family. You have to target not only the physical manifestations but also the behavioural and maturity issues that arise" and...``when the time is right (and not a minute before) a switch will be flicked and recovery will be in sight. In the meantime, all you can do is help with the symptoms and try not to despair." Remaining hopeful is difficult at times, and I so appreciate hearing from other parents as that is what gives me the most hope and not feeling so isolated. Thanks |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Parachox is a liquid parafin treatment which is available in Australia over the counter at chemists. Over the course of the past 5 years we have tried a variety of medications including movicol which have had varying degrees of success for short bursts. The whole issue with Encopresis is that it is a case of trial and error for each family. You have to target not only the physical manifestations but also the behavioural and maturity issues that arise. I was beside myself when I found out we were to move to a new area - how would my son cope and how bad would things seem without the support networks I had in my old place?? Honesty, moving was the best thing we could have done because it gave my son a chance to start fresh. I had completely given up on ever solving this problem in the holiday break before we moved and I just let him go. No reminders to go to the toilet, no changing him - needless to say I had very low expectations for how things would turn out but low and behold, not a poo in his pants for 6 mths!!!! With regards to the high acid foods, you need to see what works. We noticed that orange juice was a problem but apple was fine. From there we just paid attention to what seemed to cause the biggest problem. Personally, dairy was a much bigger causal factor and it is much harder to eliminate. From this point looking back I am becoming more convinced that when the time is right (and not a minute before) a switch will be flicked and recovery will be in sight. In the meantime, all you can do is help with the symptoms and try not to despair. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Thank you for your response. How did you arrive at the steps you took? Is there somewhere I can go to find the acid level in foods? And I have been unsuccessful in locatin information on parachox. Can you please give me a little more info? I really appreciate your time. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| 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. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| 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 |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
Copyright © 2008 Yahoo! Pty Limited. All rights reserved. Advertise with Us - Privacy Policy - Terms of Service - Help |