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| 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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| Thanks for the info. I don't mind you sharing with your daughter about my daughter...I think that is important so she does know she's not alone. How old is your girl now? Some of the symptoms you describe are similar to my daughter, but other's are different. Like you suggested, my daughter would need to get a nuclear transit test done to determine if she has STC or not. Does the Dr. say if your's daughter's intestine will rebuild itself again over time from using the interferential machine? When your daughter soils, does she say she doesn't feel it? Why do you think she soils the day after she doesn't use the machine? I'm just trying to figure out why my daughter soils some days and not others. She is currently not on laxitives. And I don't believe she is constipated. |
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| Sorry, forgot to say another option is to have the diseased part removed but I doubt they would do this without a trial of the interferential machine first. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| As far as I know, the only treatment is the interferential machine - and that is now all we are doing apart from also having a fairly low fibre diet. We haven't used laxatives since March/April. If we miss one day with the machine then she soils the next day - also after soiling, the psychological demeanor completely changes back to how it was before the machine. Total denial of an accident and "naughty" excitable behaviour. One specialist said "fix the constipation and you'll fix the behaviour" which we have found to be totally correct. I'm pretty sure you have to be born with STC and again, we had absolutely no idea anything was amiss until we tried to toilet train around 2. Then around the age of 3 she started continually vomiting and walking bent over on her tip toes. She was just about to see the surgeon to see if he agreed with the GP that it was appendicitis when he was called away to an emergency. It was then that they did an xray and discovered the constipation. Like I've said it was all soft stool. The doctors can't feel any mass but it's always there on the xray. The best thing to do is to have the nuclear transit study to rule out/in STC. But you need someone who is going to be able to properly "read" the results. Maybe the images can be emailed to the professor in Melbourne? I hope you don't mind but I've talked to my daughter about your girl having the same thing - she always thinks she's the only one. She wants to tell her that she thinks it's really annoying having accidents, that the machine is a bit restrictive but she can watch tv while she's wearing it and you need peel your apple before you eat it. :) | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I have another question for ireadlabels. I'm not completely clear what the treatment is once your child has been diagnosed with STC? What are you doing differently with your children now that you know they have STC? From what I have found on the web...much of the treatment is what we are already doing.... in order to keep the bowels empty. Am I missing something? I know with my daughter there is a behaviour/psychological component as well. Even when she feels the stool, she often ignores the signal and still refuses to go to the toilet on her own...and I need to prompt her. She's much less resistent than she used to be and will often respond to my reminder and go poo. I think it's her way of staying in "control". As she matures, (she is 9) she is getting better and acknowledging that she does have to poo. She is also on medication for ADD, and that helps tremendously because she's way more focused, both at home and at school. Can STC be acquired at any age? Could it be possible that my daughter wasn't born with the condition but acquired it when she was 2 when she started holding her stools. Can STC be acquired once the bowels have been stretched? or is STC something someone is physically born with? Ultimately I know you're not a Dr. and I would find out the answer to my questions if I made an appt with my daughter's pediatrician. But I'm curious and thought you might know some answers as well. Thanks, Looking forward to hearing from you |
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| Hello Joe,that's excellent news! You don't say how old your daughter is or if she had been toilet trained prior? It would still be interesting to have the Nuclear Transit Study done to completely rule out STC as well. It would be dreadful if you did all the laxatives for 12 months only to find that it was STC after all. It's free in Oz but I don't know how your health system works. My children had proper bowel movements after a "flush out" but it always returned to soiling as the system built up again. The other thing about STC is that the stools stay soft even when the colon is completely blocked up ie not the hard rabbit pellets etc. You don't say what your daughters stools were like? I remember being shown a stool chart and being asked to pick which one resembled my childrens stools and I said "none of them" it was always like freshly mixed cement - no form, not liquid, just ooze. But saying that never set off any "light bulb" in any of the multiple specialists that we have seen and we have travelled all over Oz! I hope your child doesn't have STC and that this new regime works for you. I am interested to know what your specialist thought about STC though. It's always amazing to see what some peoples children eat ie no fresh fruit, veges or fibre and they have absolutely no problem. Are you going to find out what the professor thinks about your specialists diagnosis? I wonder what it is in peanut butter that they are concerned about? My kids have that and dairy every day. We have tried no dairy at all - only soy - previously with no luck. But then found out that if you have Fructose Malabsorption you probably also have raffinose malabsorption (which is in soy) so it really is a never ending story! Best Wishes xx | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| And the impaction was not just in the ascending colon. Yes we had leakage, (all the time) but not from the narrow area defined by all the other doctors. Seeing this xray for ourselves, and how much fecal matter was bogging down our daughter was incredible. We never believed the "encopresis" moniker because that protocol never worked, which led us to believe it was something else. Further, we were told specifically to avoid peanut butter, ice cream, dairy, apples, applesauce, bananas and chocolate - all things she had daily. The problem with the dairy is the calcium and the phospherous. The calcium in dairy products cannot be completely digested by many people (this has nothing to do with lactose - lactose free also needs to be avoided) and can lead to significant impaction. It will take 6-12 months for the tissue to return to its normal size, so we have to be vigilant with our mirolax regimen (we are to reduce it back to one a day). What we are essentially trying to do is create stools that are almost diarhea like - no hard stools during this 6-12 month time. We are to try and prevent any more blockagge from occuring. This is day four - she has the urge to defecate and still no accidents. We have been through the worst I have seen on this site and the answer was very simple - it just took someone with some common sense who wasn't blindly following typical protocols in order to give us our daughter back. There is more, but I am running out of space. I hope this helps some of you. If you need more information I will be happy to provide it. |
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| Hello everyone. I've been on this site before looking for answers like everyone else. We had a breakthrough today that I wanted to share. For the last four years we have been to three pediatricians, three pediatric gastro specialists, run all the tests, had all the accidents, lived on the laxatives, had many soiled pairs of underwear everyday during this time. My limit was the full blown accidents at school. I read about STC, contacted John Hutson and was prepared to travel to Australia (we live in the US) to do something. My pediatrician sent me to another gastro doctor to see about a nuclear transit test. After listening to us, and all our "expert" take on the situation, he asked us to define "Encopresis". We did, and included everything we have been told by the medical community and what we have researched on the web. Then he told us we were wrong. This VERY experienced doctor challenged us to look up "encopresis" in ROME II and ROME III (google it). The definitions aren't the same. Then he did what all the other doctors never did - he gave her a digital exam right then. He smiled and simply said "she's impacted." He sent us over to the nearby hospital for a bariatric enema. This is a simple and pain free test that allows an xray to be taken while the fluid is administered. It was over in 15-20 minutes. We were told to give our daughter 3 mirolax drinks a day until we returned to see the doctor in three days. From the minute she walked out of the hospital her whole demeanor changed. She was happy, and talking non stop. She was back!!!. We then experienced three days with NO ACCIDENTS!! First time in 4 years. When we returned for a follow up the doctor showed us the xray. She was impacted from her ascending colon all the way to the end. And all of this tissue was hyper extended so that the neurotransmitters that normally expand to tell us we have to defecate were no longer able to function. More... |
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