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| Hi, I was wondering what sort of procedure your son had? My son is now 12 and has suffered this problem since about age 5. Like everyone else, I was clueless and confused about it at first. We have been treating with Miralax for over a year now, but still having problems daily. When he sees the specialist we are told he is still backed up (and shown an xray) then sent home to do more enemas. (We are on his third specialist because of lack of progress and always it comes back to the MIralax) I am never sure we are getting it all because the xrays always show more feces stuck in there each visit to the doc. I have always wondered why they don't do some kind of procedure there in the hospital or office to be sure we are starting with a "clean slate". Also, what do you do about his clothing. Obviously his underwear are always completely soiled and ruined. I am just wondering what other mother's experiences are in this area. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Does your son have any problems today? is he symptom free of intestinal problems? If he completely outgrew the soiling...I'd say that's postive and gives me Hope. Has your niece seen a Dr.? If she's had problems since birth there is probably something wrong physically. Can you talk to your son about his experience in order to help you with your niece? He'd be the best person to offer you some suggestions as to how to cope. |
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| Now I'm raising my neice (4). She was constipated since she was a baby. She refuses to sit on the pot. Soils constantly and won't admitt when she is dirty. I'm sick over it. She's in daycare. They've been tolerant but in Sept. She goes to a new class and I don't think they will be so tolerant. How do I get help?? I can't do this for 6 or more years. What should I do?? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Twenty years ago, when my son started first grade, he began to soil his pants. The pediatrition said he's constipated and, give him a dose of metamusil daily. When that didn't work I sought out a psychologist. He said he would have to treat the whole family but a medical cause needs to be ruled out. The peda. just brushed it off. So, we suffered in silence and embarassment, as our son continued to soil. Eventually he grew out of it. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Welcome Sally, contact the Melbourne Children's Hosp and ask for Prof John Hutsons receptionist. She will tell you how to go about getting an appointment. Also if you have to travel a long way, ask for him to send a referral to the nuclear medicine dept and arrange for the Nuclear Transit Study to be done prior to your appointment with the professor. The study is done over 3 days. We did ours on a Wed, Thurs, Fri then did the tourist thing Sat, Sun appoint with Prof on Mon then flew home Tues. My research indicates that children are more likely to soil in the afternoon, they don't have the "trigger" sensation that is usually caused by eating and if your child has this disease it is definitely NOT psychological! Flush outs etc will get the stool out and treat the symptom but the cause is still there. You can do laxatives/soft stools every day for 10 years like we have but that isn't addressing the underlying problem. Please don't label this condition psychological until every possible medical cause has been ruled out. In the Professor's podcast he talks about children being placed in mental institutions because of this disease. If you have to, print out info on Slow Transit Constipation and take it to your GP or go to someone else! | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi wow it sadly feels good to know, we aren't the only ones at our witts end out there. My son is 6 and we are having all these problems too... having foudn this site has made my husband realise its a problem that isnt behaviourial. I have been to several GP's, I am over being told to try a rewards system. I work in childcare... I know about rewards systems... guess what they work for a couple of weeks with my son and then he just regresses backwards. I feel its like 1 step forward and 2 million steps back.... I have noticed that many people have been fortunate enough to get into the childrens in melbourne. How did you get into there... my doctor wouldn't give me a referral and basically talked me out of it saying that it was behaviourial. Do you need a referral to get into the children's for this. What is the doctors name? I spoke to my husband tonight and suggested we stop all dairy products ( son used to be lactose intolerant... maybe he still is) has anyone else had any success with this option. I am too scared to use laxatives as he is at school and i dont want him to have a motion there that I could possibly prevent. ( he usually has his accidents in the afternoon at afterschool care) and is even worse at home. I have looked also into hypnotherapy.. any suggestions would be helpful. |
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| I don't know how much you've read on these posts but both our children have Slow Transit Constipation/Neuronal Intestinal Dysplasia. Google these and see what you think. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I have an eight year old step daughter that has been soiling her pants since she was four. We have had psychological counseling, numerous doctor visits, enemas, laxatives, rewarding, punishing, not allowing to go to friends houses, not allowed to play sports so she doesnt embarrass herself, everything we could possibley think of! We are at our wits end! We have asked her mother who is a nurse to help us with this situation. She refuses almost to the point she doesnt believe it exists. Her mother has also told her that it is okay to lie about it! That has been one of the biggest challenges for her therapist to break through. I worry about her doing it at school and when the other kids find out. Now her six year old sister says she is going to tell all the kids on the bus when school starts. She will be the third grader that goes to the bathroom in her pants! Kids don't forget about things like that! Kids are cruel and we have done everything we know how to explain to her that they will NOT be nice. For a time we did have a breakthrough. We started focusing on keeping panties clean. Not did you go to the bathroom in your pants. That worked for a little more that six months. Now she has completely digressed to worse than ever before. We need help! I just wonder if she will stop on her own or be shamed into stopping because once again kids are cruel! Does anyone have suggestions? Words of encouragment would be so incredibly appreciated. |
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| What specifically has your granddaughter been tested for? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My 5 yr old granddaughter has been pee trained since 3, but never had a bm in the toilet...we switched her to training pants , thinking it would help, she just goes in the pants...she has been tested and every thing is ok, she is a well adjusted child, middle child, very smart..She was born with sucrose isolmaltese deficiency..the enzyme that breaks down carbs and sugars..she suffered diareah for 5 months..when we controlled the sugar intake there has been no diarea...She is involved in an incontinence clinic in Boston and nothing has changed in 6 months..any suggestions??? This is an embarrassing situation and she doesn't seem to mind it at all...thanks for any help you can give...Lee | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Joethebard.....sounds like things are going well for you. And I know what you've been through. I feel a little offended though that you think your case has been the "worst on this site". You have no idea what the rest of us have been through and believe me I think it's safe to say that it's been "bad" for us all. I don't think it's fair to compare. In our case one enema wouldn't have "fixed" the problem. My daughter has been cleaned right out several times, only to get constipated again. There are many reasons why children soil and getting cleaned out is only one solution. And yes, it does work...however, for many of us we have to keep looking for other solutions as well. |
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| Lynn, Look at my two entries below. Your case sounds very similar to ours and everything we did to try and correct the problem. We have gone nearly a month with very minor accidents after the procedure we mentioned below. And what accidents did occur we believe is due to the fact that we are creating 'near' diarrhea for the next 6 - 12 months. We have been through some of the worst we have seen on this site. We carried that "encopresis" label forever because that is what all our doctors told us it was. We spent hundreds, and I mean hundreds, of hours searching the web for some clue that might help us. In the end, the problem was not nearly so difficult or diabolical. I cannot say that we have completely conquered it yet, it will take time, but we finally see the light at the end of the tunnel. We know what the condition is now (because we finally met the right physician) and we are winning. I would be willing to bet that many of the people that frequent this site could have their lives changed by following the same simple routine we are. It really works! |
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| tWhat's interesting and given us hope is that since my daughter started Kindergarten (back in 2005), she has had very few accidents at school and over the past year (grade 3) she didn't have any accidents at school. The psychologist and psychiatrist believe that it's because deep down (perhaps even unconsciously) she knows that it's not appropriate and when she gets home it doesn't matter so much. She probably holds it all day too, and then when she has to go after school, she doesn't go on the toilet....she just lets it go in her pants (perhaps unconsciously). Since my daughter was a baby, the feeling of messy pants has NOT bothered her. Still doesn't for the most part...which is part of her personality. She is slowly starting to acknowledge the mess in her pants and doing something about it. My daughter's school principal is also a Dr. in psychology and understands encopresis and she has been a big support to us as well. There's no one answer to fix encopresis and each child has different reasons for soiling. The support over the years has provided us with education, and allowed us to figure out how to best deal with our daughter's encopresis. We don't know for sure if she'll ever be symptom free, but keeping the stress low in our lives is also key. When the stress level in our home is up, the encopresis is worse. When I focus on the encorpesis and being "the problem", the problem gets worse. As much as possible, I give the encopresis issues over to my daughter to deal with...cause in the end...she is in control of the encopresis. I am only in control of my own emotions. Yes, I still prompt her to have her toilet sits, encourage her not to hold it, tell her it's OK when she has an accident if/when she can't help it, teach her how to clean her panties when they are dirty and remind her what happens when she doesn't go to the toilet regularly. I could on with what has worked for us...but I've alreay said alot, so will sign off. Hang in there! |
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| lynn, I wish I could answer that question in a statement, but I can't. However, the first answer would be that I have never stopped reaching out for support, from friends who are supportive, professionals and this forum. I discovered this forum close to 2 years ago and I have never stopped reading and posting during good times and *** py times. I have done hours of research on the internet and accessed professional support for my daughter as well as for my husband and I. WE COULD NOT DO THIS ON OUR OWN. From Sept to April last year, my husband and I went to counselling sessions on how to deal with our own emotions around the encopresis and how to maintain a positive relationship with our daughter. At the same time our daughter was in play therapy to help her understand and deal effectively with her encopresis. She listens to others more objectively than to her parents. Our daughter also sees a pediatrician, periodically. Right now, we maintain a consistent routine with our daughter as much as possible. I, in particular, have learned to disengage from power struggles regarding toileting issues, with my daughter. As a result, my daughter is less resistent to sitting on the toilet regularly. As she gets older she is learning to take more responsibility for her soiling accidents...by cleaning herself and her pants. Currently my daughter is doing well with her encopresis, not to say she doesn't have accidents, but they are fewer and farther between. She was on laxitives and stool softener since she was 4 (past 5 years), and since May she has not taken any laxitives. She has a bowel movement every 1-2 days and fewer accidents. In my daughter's case, I think her soiling is a combination of physical and behavioral. I do think she has slow intestinal motility and damaged nerves, but I also believe she holds her stools. I am learning to let go (not freaking out) and let my daughter deal with the natural consequences of holding her stool..... |
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| sorry, the question just before this message (what worked for you?) was addressed to soxsoxy. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| what worked for you? What specifically did you do to help her? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi, this is my first time responding to this website, and wow! I did not realize we were not the only ones suffering this much (not to sound too negative), but let's be honest. Our son is 5 1/2, has had soiling issues forever. We are currently on Miralax (1 cap/day), soiling 3X a day now b/c his stool is like soft custard or applesauce. His psych is very affected by this problem, he now has anxiety which is affecting how he reacts to shots at the docs, perseverates on bad things happenning, the typical anxiety stuff...focusing on all the what-if's and negative catastrophic things that will never happen. I am very concerned about him, he starts Kindergarten this yr. We are currently seeing a Gastroenterologist (miralax and after meal toilet seatings), a psych (learning to be willing to sit on the toilet and "want to"...who knows where this will take us), a Chiropractor (realigining his Lumbar, T and cervical spine in order to regain proper neuro input and proprioception/viceral perception), and OT (auditory processing delay with therapeutic listening). I feel the chiro and OT will help the most, if the soiling problem goes away...his anxiety will be virtually be gone (maybe a bit stays...he is sensitive anyway). Unfortunatly we are doing all 4 things so if any of this works we won't know which one did it! We were also suggested by our chiro (very experienced with bowel/bladder issues in children) said to try no grains for 2 weeks (not gluten free, just no grains...rice, corn, wheat, bran, oatmeal...you know FIBER). We have been pumping my poor boy full of fiber, maybe we are making things worse. He suggested that many are more sensitive to grains than they are to dairy. Just a diet rich in fruits, veggies, meat and dairy (in moderation). Who knows, I know nothing about this stimulator I have read about. We are now having sanitary issues...has anyone used pullups during the day? I am afraid to go there. Please help. Thanks, Lynn | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My daughter is 5 and will be starting school this fall. How do you deal with soiling when in school? I keep wondering if I am going to have to home school. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| cotakaren.....your son's situation sounds very similar to my daughter's who turned 9 in May. My daughter too was diagnosed at the age of 4, hasn't had any enemas, but she's been to her pediatrician, psychologist, psychiatrist, play therapist, hospitalization at the age of 6 for 4 days, been on lactulose, senokot and PEG (same as Miralax but in Canada it is called PEG). Is your son currently on any laxitives? or any other specific treatment? |
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| milk and molasses enema??? What the?? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Just realized I was looking at some older posts. I'll read up more before my next post. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hey, I just found this website. My 8 year old son turning 9 in November has encopresis diagnosed at 3-4. Has been on miralax, lactulose, been to a special EDIE clinic (elimination disorder incontinence encopresis) I think are what the acronym stands for. Has gone to psychologists, psychiatrists, has had a 3 day hospitalization with the golitely in the nasogastric tube up the nose and the milk and molasses enema. He has shown that he knows what to do cleans up after himself, isn't afraid to use the toilet has initiated going on multiple occassions and then frequently degresses and has a lousy week. Have not been familiar or told anything about fructose problems. where are things at with you by now? Is your child getting better? Thanks! |
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| Thanks. I agree with your statement. I haven't decided at this point if we will go ahead with more tests. It all seems so instrusive. A big part of me believes that it isn't one or the other in my daughter's case, but a combination of both, if that's even possible. I believe that she holds her stool sometimes (FFR), but I also believe that something is wrong physically...slow motility or damaged nerves. A part of also believes that even if we did have a diagnosis and knew what we were dealing with, more specifically, not much would change in terms of what we are currently doing for treatment. It is summer here so i will likely leave it until Sept. when all the professionals are back from holidays. Everyone goes back to routine in Sept. |
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| The professor is the one named by "joethebard" on the 19/6 initials JH. Yes, there is absolutely more than one cause and FFR can be diagnosed with the same nuclear transit study. I think there is more chance of the "encopresis" being the cause of psycholigical problems rather than psychological problems causing the "encopresis". Have you decided if you're going to have the study done? At least then you will hopefully know exactly which problem you are dealing with. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Just wondering what the name of the professor is that you are currently seeing. I found some research articles on STC from Royal Children's Hosp. in Victoria, Aust. Very interesting.... It suggests that Chronic constipation (which can lead to soiling or encorpesis) in children may result from slow colonic transit (SCT) OR rectum dystunction and/or psychological problems know as functional fecal retention (FFR). "Evidence is accumulating that SCT and FFR need different treatments." Children with FFR actually have normal colonic transit; where as SCT has abnormal colonic transit. The other thing I've read from other research from the US is that diet rarely has any impact on FFR, whereas, with SCT diet does play a part in the constipation. I could go on and on with other info, but what I am trying to say is that there is definetely more that one cause or underlying reason for soiling, and more that 1 treatment. Food for thought... |
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